My journey with the beast we know as ulcerative colitis is also marked by a lot of blessings, one of which being an outrageously supportive network of friends and family. Many of those great folks say such nice things to me about how upbeat and positive I manage to stay in the face of all this crap, but for some reason, I feel the need prove them wrong by pointing out examples of just how upset I can become.
Sometimes these little pity parties are not even triggered by the disease itself, but by all the other stuff that goes along with it. Example: just last week, I came very close to losing control of my bowels just as I arrived at a job interview. Worst first impression EVER, but I shrugged that off and went on about my business, and it was fine. (Hey, I even got the job!) So I can survive all that, but a little piece of paper I received in the mail late last week started me on a cycle of doom that ended in a full-fledged temper tantrum last night.
It was a benefit update from my new health insurance company, showing me that my share of my monthly Remicade infusions will be $2,500. Each. When I became upset about this, John reminded me that before he took his new job, he quizzed their H.R. about this treatment specifically, and although he didn't remember the exact answer about how much it would cost, he knew he would never had accepted an answer like, "$2,500." So he set off to get some answers from his company about the coverage.
Meanwhile, I had to deal with some other administrative stuff related to getting all my medications paid for. But it's kind of hard because when I first got signed up for this new insurance, they input the wrong birthdate, so I wasn't showing up in their system. While they were working on that, I still needed to have prescriptions filled, so they did some kind of temporary voodoo to make that work. With the help of some nice folks at the insurance company and John's H.R. contact, it's fixed now, so everything should be running smoothly on that system. (Pay attention, friends: THAT is what they call "foreshadowing...")
Then, there's the fact that the clinic where I get my Remicade treatments has a hard time staying on top of their billing. I know it takes time to file a claim to my insurance, find out what they are going to pay, and then bill me for the balance, but as of today, my bill for the treatment I received in MARCH was still outstanding (as well as all the subsequent treatments.) I called twice in July to sort this out, and finally sent a really angry letter asking them to research any discrepancies and get back to me. Yesterday, exactly a month after that letter was sent, I received a voice mail from the billing agent saying that my balance is $1,053, that I should call her at my earliest convenience, and she is "available to take my credit card info over the phone, because these bills are getting quite old now." I nearly crushed the phone against my head when I heard that. My blood pressure is going up just writing about it now.
But wait! There's another player in this whole billing thing. The drug company offers a program for patients to reimburse you a portion of your share of their outrageously-priced drug therapy, based on some formula nobody will ever figure out. But because it's a reimbursement program, you wait until your insurance pays the clinic, then send the drug company your insurance paperwork showing what your portion is, then they will load their reimbursement onto a credit card which you can only use to pay your health care provider (not at the grocery store, or Anthropologie, or DSW!) Thankfully, my clinic is so far behind in their billing that this doesn't slow down my ability to pay my bills, but it's quite a hassle. Each year, you need to reapply for this program by filling out paperwork which needs to be approved by your doctor and accompanied by a slew of your personal financial documents, so they can hold your social security number hostage, I suppose.
Now back to John and what he found out from his employer about that $2,500. They want to provide their employees with an insurance plan that has a $1,000 deductible, but the premiums would be sky high, and only a small percentage of their employees will use their health plan enough to reach that cutoff in one year anyway. So instead, they have a plan with a $2,500 deductible (aha...the amount I am expected to pay for that Remicade infusion...a light goes on!) but they will reimburse any employee $1,500 when they show that they have met that $2,500 deductible. Which is great, but the paperwork I received from the insurance company last week is not the form they need, so the H.R. person kindly told John that I can access my insurance account online and print off what she needs and we'll go from there. As luck would have it, this is the same form I need to send in to the drug company to get their reimbursement, so I can kill two birds with one stone, as it were.
But here's where the temper tantrum comes in. John asked me to get that paperwork last night so he could turn it in today. I said sure, but give me a minute, I am running behind on my dosing schedule and need to administer a suppository and then an enema so that I'll be able to do my last enema before bedtime. Once that was done, I sat down at the computer and logged in to the insurance website, where I can see several claims, but not the one in question. Hmmmm....Guess what? None of the claims that took place before my birthdate was fixed shows up in their system! Before I got all freaked out, I asked John to just look over my shoulder and see if maybe I was missing something, and when he couldn't figure it out, he got frustrated. So now we are both mad, and I tell him, don't worry about it, I will call the insurance company tomorrow, I'm sorry I got you upset, don't worry. But he was pretty ticked and kind of flew off the handle about how frustrating this is, which made me feel like it was somehow MY fault.
And that's when I blew.
I screamed that I know how f'ing frustrating this is, he doesn't have to tell me what a f'ing frustration all of this is, because I want to slit my f'ing wrists over all of this pretty much every f'ing day. All this, on top of taking a zillion pills, structuring my day around enemas and suppositories, and still feeling like crap half the time! And yes, I do mean I SCREAMED all of this, then stormed out of the house in tears. I spent the next 15 minutes sitting on my neighbor's curb, crying my eyes out, trying to get over it and convince myself that it's just paperwork--it's all going to sort itself out.
Soon, I was drawing a little bit of attention from passing cars and neighbors, sitting there sobbing, but I didn't really care. The only thing that finally motivated me to move was that I had to go back inside and begin the ritual that is administering my last enema of the day. (Those goddamn f'ing enemas....)
If you've read this far, you have a lot more patience than me, so I hope you can take something away from it. Namely, I hope it makes you think a little (again) about the concept of universal health care and how much more cost and time effective it would be, not just for me, but for all the other people involved in this story, if we had a health care system that followed each person through their life, so they know who they are, charged a reasonable fee for the treatment or drug, and simply managed their f'ing bills. Plus, add to this the fact that my disease, as well as so many others, is profoundly affected by stress, so maybe, just maybe, removing some of the stress from the process of being treated would actually result in better outcomes.
I'll tell you something, I'd pay a lot more than that stupid $2,500 that started all of this if I could have such a system. Having UC is a f'ing nightmare, but it's nothing compared to navigating the health care system. More often than not, that is the crux of my UC-related pity parties.
(Addendum: you're going to LOVE this! I just got a robo-call from Walgreens telling me they are having trouble re-filling my suppository prescription and need to contact my insurance company for more information. How much do you want to bet that the voodoo related to getting my birthdate in their system is responsible for this latest snafu?)
Friday, August 19, 2011
Worm Day #3
It's time to take my third dose of whipworm ova already--can't hardly believe how it sneaks up on me. There's not much to be done by way of preparations. I will plan on eating a lighter, less challenging, diet than usual today and for a few days going forward. Then, I will take a little vial of clear liquid out of my fridge, which I hope and pray contains 500 viable TT ova, and drink that up just before bedtime tonight, which is the quietest time for my belly, so there's less chance of the eggs getting swept out the digestive tract. Tomorrow and maybe for a day or two after, I will take a good dose of imodium to slow down my digestion and give those fellas the opportunity to settle in. Other than that, life will go on as normal.
I have yet to reap any benefit from the wigglers I have taken thus far, and that is to be expected. If I am calculating correctly, the first dose I took 8 weeks ago should just be getting attached to the lining of my colon and will soon start laying eggs of their own. Don't worry, these eggs cannot be fertilized in my colon, so there's little risk of developing a raging worm population. They should harmlessly pass through my stool and into the toilet. I will take a stool test in another month or six weeks to make sure those eggs are there, which is the only sure way to know if the worms are alive. (Barring another colonscopy, which I'm not up for.) Once we know they are alive, it will still take a little while for me to expect to feel much better, and even then, it will likely be a slow improvement, not like flipping some kind of switch. So I'm thinking that by Christmas time, I can expect to feel better.
Of course, knowing all of this does not stop me from reading into every single symptom I'm having. The last month has been a little extra rocky for me, and I'm hoping that means there is a battle being waged by my immune system trying to expel my worms and my worms fighting right back. I've had more b.m.'s, they have been less formed, they have come throughout the day (whereas they are usually bunched up in the morning), they have been more urgent, and I've started seeing some blood and just a bit of mucus again after having gotten that under control earlier this summer. All of this could mean the worms are getting settled...or it could mean nothing. I hate that about having UC. There's just no way of controlling all the variables to know what's causing what.
But I do think I'm doing a bit better this week. Have been eating and drinking a bit more freely the last few days, and have had no urgency emergencies. Of course, some of this may be attributable to the fact that I went coffee-free for a week (fell off the wagon today, but I'll get back on), plus I added YET ANOTHER enema to my daily regimen for the last 8 days. So now, in addition to my daily asacol, prednisone, azathioprine, and monthly Remicade infusions, I take two suppositories, a hydrocortisone foam enema, and a hydrocortisone liquid enema each day. Geez. When you put it THAT way, one really wonders why I'm not doing better than I am.
Which makes me all the more hopeful that the worms are the answer! God, I sure hope so.
I have yet to reap any benefit from the wigglers I have taken thus far, and that is to be expected. If I am calculating correctly, the first dose I took 8 weeks ago should just be getting attached to the lining of my colon and will soon start laying eggs of their own. Don't worry, these eggs cannot be fertilized in my colon, so there's little risk of developing a raging worm population. They should harmlessly pass through my stool and into the toilet. I will take a stool test in another month or six weeks to make sure those eggs are there, which is the only sure way to know if the worms are alive. (Barring another colonscopy, which I'm not up for.) Once we know they are alive, it will still take a little while for me to expect to feel much better, and even then, it will likely be a slow improvement, not like flipping some kind of switch. So I'm thinking that by Christmas time, I can expect to feel better.
Of course, knowing all of this does not stop me from reading into every single symptom I'm having. The last month has been a little extra rocky for me, and I'm hoping that means there is a battle being waged by my immune system trying to expel my worms and my worms fighting right back. I've had more b.m.'s, they have been less formed, they have come throughout the day (whereas they are usually bunched up in the morning), they have been more urgent, and I've started seeing some blood and just a bit of mucus again after having gotten that under control earlier this summer. All of this could mean the worms are getting settled...or it could mean nothing. I hate that about having UC. There's just no way of controlling all the variables to know what's causing what.
But I do think I'm doing a bit better this week. Have been eating and drinking a bit more freely the last few days, and have had no urgency emergencies. Of course, some of this may be attributable to the fact that I went coffee-free for a week (fell off the wagon today, but I'll get back on), plus I added YET ANOTHER enema to my daily regimen for the last 8 days. So now, in addition to my daily asacol, prednisone, azathioprine, and monthly Remicade infusions, I take two suppositories, a hydrocortisone foam enema, and a hydrocortisone liquid enema each day. Geez. When you put it THAT way, one really wonders why I'm not doing better than I am.
Which makes me all the more hopeful that the worms are the answer! God, I sure hope so.
Saturday, July 23, 2011
Day 35/7
Guten tag. Today is day 35/7, that is, 35 days since I ingested my first dose of 200 whipworm, and 7 days since the second dose (300 wigglers) went down the hatch. I'm feelin' pretty darn sassy today. I woke up really early, 'round about 5:00 a.m., with a little bit of gas, but I didn't feel like I had to go to the bathroom. Dozed a little, then woke up again near 7:00 a.m., and this time I did have to go, but just to pee. That is huge. It is now 9:00 a.m., and I have yet to have a b.m. And I'm drinking coffee. I feel like I'm thumbing my nose at my tummy!
This week I had a check up with my family practice doc. She is supportive of my helminthic therapy and asked first thing how that is going. So I had to give her the news about the first round not making it and now we're trying again. I like that she has a lot of the same questions as other people, but she did ask one I hadn't heard before: do you have to warm them up before you take them? (The answer is no. Straight out of the fridge and down the hatch.) Because she is so supportive, I didn't have any problem asking her to order stool tests for me down the road so we can see if the fellas are surviving. She gave me a stool test kit and the paperwork I need to get that done whenever I want and told me to just not bring the stool sample to her--she doesn't think she can handle seeing any worms in my poop. This is all good because if I can avoid the havoc of shipping my poop to England for testing, that would be great. Even better that she completely put the tools in my hands so I can do this when I am ready. Yay for my doc!
Oh....wait....I need a bathroom break.....guess my streak is over for this morning.
So where was I? Oh yes, I'm feelin' good, but we know it's not because of the worms yet. If I understand their lifecycle, the fellas from the first dose have not even moved into my colon yet. The second wave are probably just working up to hatching in my stomach. I think my improved health status is likely due to the massive dose of suppositories and enemas I've been doing since my colonoscopy at the end of May. It's good that this treatment is having an effect, but by no means am I in remission. I'm still in the bathroom about 7 times a day. These trips are often very urgent--I've missed nature's call several times in recent weeks. And there's some cramping and lots of gas. So this is why I can stand up and say HIP HIP HOORAY when, like this a.m., I can hop out of bed without first running straight for the loo.
When you have UC, you learn to take these little things as big victories. I am also learning a lot of "there but for the grace of God go I" these days. I visited my friend in the hospital yesterday as she recovers from bowel resection surgery. They took two sections of her colon, totaling about 2 feet, I think. Yesterday, 3 days after surgery, her big news was that she ate two bites of jello and sipped some broth--but her tummy revolted, so she'll be going much more slowly on the food in the next few days. She will be in the hospital for a week, and is expected to spend a month at home recovering. Hopefully, after that, she will be well and will stay well for a long time to come. But, the truth is, a lot of folks who have this surgery will require subsequent surgeries; the Crohn's usually comes back, and often at the same site. BUT....that is not where we are putting our focus right now. Right now, we are laser-focused on her getting well and finally getting her life back after a really long year.
So I am very well aware of how lucky I am that I can sit here and drink a cuppa joe while she is staring down a jello cup from her hospital bed. I hope and pray I am never ever in her shoes, but I also thank god that she has this chance to feel better and do well. And I thank god for my little worms, who I hope are going to do the same for me!
This week I had a check up with my family practice doc. She is supportive of my helminthic therapy and asked first thing how that is going. So I had to give her the news about the first round not making it and now we're trying again. I like that she has a lot of the same questions as other people, but she did ask one I hadn't heard before: do you have to warm them up before you take them? (The answer is no. Straight out of the fridge and down the hatch.) Because she is so supportive, I didn't have any problem asking her to order stool tests for me down the road so we can see if the fellas are surviving. She gave me a stool test kit and the paperwork I need to get that done whenever I want and told me to just not bring the stool sample to her--she doesn't think she can handle seeing any worms in my poop. This is all good because if I can avoid the havoc of shipping my poop to England for testing, that would be great. Even better that she completely put the tools in my hands so I can do this when I am ready. Yay for my doc!
Oh....wait....I need a bathroom break.....guess my streak is over for this morning.
So where was I? Oh yes, I'm feelin' good, but we know it's not because of the worms yet. If I understand their lifecycle, the fellas from the first dose have not even moved into my colon yet. The second wave are probably just working up to hatching in my stomach. I think my improved health status is likely due to the massive dose of suppositories and enemas I've been doing since my colonoscopy at the end of May. It's good that this treatment is having an effect, but by no means am I in remission. I'm still in the bathroom about 7 times a day. These trips are often very urgent--I've missed nature's call several times in recent weeks. And there's some cramping and lots of gas. So this is why I can stand up and say HIP HIP HOORAY when, like this a.m., I can hop out of bed without first running straight for the loo.
When you have UC, you learn to take these little things as big victories. I am also learning a lot of "there but for the grace of God go I" these days. I visited my friend in the hospital yesterday as she recovers from bowel resection surgery. They took two sections of her colon, totaling about 2 feet, I think. Yesterday, 3 days after surgery, her big news was that she ate two bites of jello and sipped some broth--but her tummy revolted, so she'll be going much more slowly on the food in the next few days. She will be in the hospital for a week, and is expected to spend a month at home recovering. Hopefully, after that, she will be well and will stay well for a long time to come. But, the truth is, a lot of folks who have this surgery will require subsequent surgeries; the Crohn's usually comes back, and often at the same site. BUT....that is not where we are putting our focus right now. Right now, we are laser-focused on her getting well and finally getting her life back after a really long year.
So I am very well aware of how lucky I am that I can sit here and drink a cuppa joe while she is staring down a jello cup from her hospital bed. I hope and pray I am never ever in her shoes, but I also thank god that she has this chance to feel better and do well. And I thank god for my little worms, who I hope are going to do the same for me!
Tuesday, July 12, 2011
Day 25 of Helminthic Adventure #2
Holy Smokes! I can't believe it's already been 25 days since 200 little TT ova went down the hatch! I've been meaning to do an update on my status, but just haven't done so until now. First, let's review some of the basics:
On average, I am feeling about the same as I have for a while now--about 5-7 bm's/day. Several of these quite urgent, meaning I've been racing to the bathroom a lot (and not always making it in time.) A little bit of bleeding, but not much in the way of mucus or cramping. Generally, this is a pretty good status, which may actually make it easier for my worms to get settled. I've heard that people who are in the middle of a dramatic flare have less success with this treatment because their immune system is so freaked out that the worms don't really stand a chance. So, since mine seems to be fairly relaxed right now, I may be better off. (But who really knows?)
The main thing that is getting to me right now is my prednisone dose. I started taking 12.5 mg/day right before dosing as insurance in dampening the immune response. That seemed to go okay, and then I stepped down to 10 mg/day about a week ago. That's about when the side effects really kicked in. I'm not sleeping well, I am an emotional train wreck, and my appetite is bottomless. Mentally, I am unfocused and can't seem to complete the easiest of tasks, and then when I do something dumb like double book my calendar, I get really upset about it. The good news is that I've been down this road before so I know it will get better as I continue to reduce the prednisone. Also, I'm fairly able to be objective and just say to myself, "Wow. You're really overreacting to that guy cutting you off in traffic. It's just the prednisone, so chill out and go about your business." But still. It sucks to be so crazy and to know it, and to not be able to stop it.
The original plan was to up the dose on the prednisone prior to each dose of helminths, and then ratchet it back down again in between doses, but I can tell you right now, that ain't happenin'. Especially since my symptoms are fairly stable, I am going to continue to taper off the evil steroids and hope for the best as I take my worms. There is just no way I can put myself (and everyone around me) through all this craziness for the next several months.
Swimming through the Helminthosphere
I spend a fair amount of time trolling around what I refer to as the "helminthosphere," meaning the forums and websites set up and maintained by people who are either using or considering this therapy. And I have to say that while that provides a lot of good info and support, it also can make me feel even more isolated. For example, lots of folks talk about their "helminth bounce," a golden period right after dosing where they feel invincible. It gets me all wound up, thinking, "I don't feel that way. Should I be feeling that way? What's wrong with me?" Then there's other people who report on the "worm flu," which is a sluggishness and general malaise, which also takes place right around dosing. Again, I don't feel that way. Of course, I'm glad I don't feel that way, but am I supposed to feel that way? Is something wrong?
My other issue with the helminthosphere is that, as you can imagine, people who are taking charge of their own health in this way can become quite evangelistic in their beliefs. (Myself included.) We're a bunch of know-it-alls about the in's and out's of not only our own illnesses, but the many and various treatments we have already tried, plus every aspect of helminthic therapy, from the providers available, to the science behind it, to the logistics of getting the worms...It can be a little overwhelming, and sometimes we forget that every one of us is on a different journey with different experiences, different motivations, different resources, different goals, etc. In many ways these journeys are parallel, but they are different nonetheless. And personal. Intensely personal. So although I know that people mean well when they suggest I get a microscope and do my own stool testing, or when they wonder why in the world I would choose to continue to take a drug like Remicade when it can have such nasty side effects, in some ways, their suggestions make me feel all the more alone with my decisions.
The Bigger Picture
I try really hard to take what I experience with my disease and try to turn it into a bigger lesson about how to navigate this life. So here's the upshot from what I've been experiencing lately:
- I'm taking a protocol of 2,000 whipworm ova spread out over several doses that I will take each month. This is different from my last try, where I took 1,250 ova all at once. The idea is that smaller doses at monthly intervals might not be as likely to trigger a severe immune response, so they'll stand a better chance of surviving this time.
- A lot of people ask me if I can see the worms swimming around in their liquid, and the answer is no. These are not worms yet, they are ova, that is, worm eggs, and they are so small as to be invisible in their liquid. So each dose is just a matter of sipping a teaspoon of tasteless, odorless, clear liquid out of a small vial. It's quite a non-event, actually.
- I took one dose upon receiving my little friends, and now the rest are chillin' in my fridge, next to the butter, waiting to be "called up." Supposedly, they will be fine there for several months, but without a microscope, the know-how, (or really, the interest) I have no way of knowing for sure if they are actually viable. This is the biggest glitch in the plan for me. I'm assured these fellas are really hardy, but since we still don't know why they didn't survive the first time, I'm understandably a little leery about every little variable, like maybe I keep my fridge a little too cool for them, or maybe they are lactose intolerant and shouldn't be so close to the butter....
- The lifecycle of the whipworm is such that we should be able to start testing my stool to see if they are in there in about another month. But even if they are alive and getting settled, I won't know for several more months if this treatment is working. I'm generally targeting Christmas-time as my milestone for hopefully getting a little relief from the UC symptoms.
On average, I am feeling about the same as I have for a while now--about 5-7 bm's/day. Several of these quite urgent, meaning I've been racing to the bathroom a lot (and not always making it in time.) A little bit of bleeding, but not much in the way of mucus or cramping. Generally, this is a pretty good status, which may actually make it easier for my worms to get settled. I've heard that people who are in the middle of a dramatic flare have less success with this treatment because their immune system is so freaked out that the worms don't really stand a chance. So, since mine seems to be fairly relaxed right now, I may be better off. (But who really knows?)
The main thing that is getting to me right now is my prednisone dose. I started taking 12.5 mg/day right before dosing as insurance in dampening the immune response. That seemed to go okay, and then I stepped down to 10 mg/day about a week ago. That's about when the side effects really kicked in. I'm not sleeping well, I am an emotional train wreck, and my appetite is bottomless. Mentally, I am unfocused and can't seem to complete the easiest of tasks, and then when I do something dumb like double book my calendar, I get really upset about it. The good news is that I've been down this road before so I know it will get better as I continue to reduce the prednisone. Also, I'm fairly able to be objective and just say to myself, "Wow. You're really overreacting to that guy cutting you off in traffic. It's just the prednisone, so chill out and go about your business." But still. It sucks to be so crazy and to know it, and to not be able to stop it.
The original plan was to up the dose on the prednisone prior to each dose of helminths, and then ratchet it back down again in between doses, but I can tell you right now, that ain't happenin'. Especially since my symptoms are fairly stable, I am going to continue to taper off the evil steroids and hope for the best as I take my worms. There is just no way I can put myself (and everyone around me) through all this craziness for the next several months.
Swimming through the Helminthosphere
I spend a fair amount of time trolling around what I refer to as the "helminthosphere," meaning the forums and websites set up and maintained by people who are either using or considering this therapy. And I have to say that while that provides a lot of good info and support, it also can make me feel even more isolated. For example, lots of folks talk about their "helminth bounce," a golden period right after dosing where they feel invincible. It gets me all wound up, thinking, "I don't feel that way. Should I be feeling that way? What's wrong with me?" Then there's other people who report on the "worm flu," which is a sluggishness and general malaise, which also takes place right around dosing. Again, I don't feel that way. Of course, I'm glad I don't feel that way, but am I supposed to feel that way? Is something wrong?
My other issue with the helminthosphere is that, as you can imagine, people who are taking charge of their own health in this way can become quite evangelistic in their beliefs. (Myself included.) We're a bunch of know-it-alls about the in's and out's of not only our own illnesses, but the many and various treatments we have already tried, plus every aspect of helminthic therapy, from the providers available, to the science behind it, to the logistics of getting the worms...It can be a little overwhelming, and sometimes we forget that every one of us is on a different journey with different experiences, different motivations, different resources, different goals, etc. In many ways these journeys are parallel, but they are different nonetheless. And personal. Intensely personal. So although I know that people mean well when they suggest I get a microscope and do my own stool testing, or when they wonder why in the world I would choose to continue to take a drug like Remicade when it can have such nasty side effects, in some ways, their suggestions make me feel all the more alone with my decisions.
The Bigger Picture
I try really hard to take what I experience with my disease and try to turn it into a bigger lesson about how to navigate this life. So here's the upshot from what I've been experiencing lately:
- Stay objective about things that are happening TO you, but do your best to rise above. I'm not gonna sweat the prednisone side effects, but I'm not going to let them be an excuse to act like a raving lunatic either. I can't do anything about not being able to focus for more than two minutes at a time, but nor is it ok to take out every little frustration on everyone around me.
- I'm going to keep trying to respect other people, their experiences, and their choices. I want to provide support to other people who are trying this therapy, or anyone who needs help in other parts of their lives, but I'm not going to try to impose my choices, my preferences, or my opinions on them. (This one is tough!)
- Likewise, I'm not going to let other people's experiences define expectations for myself. So what if Sally had the worm flu for 10 days after she ingested her worms but I didn't. That's interesting info, but it doesn't say anything about how my journey is going to go. I'm glad Billy found the specific carbohydrate diet (SCD) so helpful, but I just don't think that's going to work for me, and that's ok.
Wednesday, June 29, 2011
How I Got Here
I keep this blog mostly to chronicle how I feel emotionally about my disease, and to give my friends and family a way of keeping up with my progress. But I have been encouraged by others undergoing helminthic therapy to share the more clinical details of my journey for the benefit of those who may be considering the same treatment. Toward that end, here's a timeline of my experience with ulcerative colitis for those who are interested in how I got here....
September, 1997--diagnosed with ulcerative proctitis, after a six week battle with unrelenting diarrhea, cramps, bleeding, etc. After diagnosis and a quick round of high-dose prednisone, I rebounded and remained stable for a couple of years on a relatively low dose of sulfasalazine (the generic 5-ASA treatment that's been commonly prescribed for IBDs since the diseases were first described in the 1930s.)
August, 1999--pre-wedding stress led to a mild flare, treated successfully with an additional course of prednisone.
Somewhere between then and now--my disease became more and more difficult to control, prompting a change in diagnosis to left-sided ulcerative colitis and requiring more and stronger maintenance meds, plus more frequent rounds of prednisone. Started on Asacol (a higher-dose 5-ASA than sulfasalazine), azathioprine, hydrocortisone foam enemas, 5-ASA enemas, 5-ASA suppositories, all-liquid diets, acupuncture, and finally, Remicade infusions every 8 weeks. Remicade originally prompted remission, but when I developed jaundice, we discontinued both the Remicade and azathioprine. Maintained remission for several months, but I started to flare again in July 2008.
August, 2008--restarted Remicade and azathioprine at 5 mg/kg every 6 weeks. Stabilized, but have not achieved remission.
Sometime in 2009--increased dose and frequency of Remicade. No change in symptoms. Up to 5-7 loose b.m.'s/day, high urgency, cramping, bleeding and mucous. Mornings are the worst; I'm usually (but not always) ok if I can just make it to lunchtime.
March, 2010--began serious consideration of helminthic therapy, while also exploring other options such as specific carbohydrate diet, complete colonectomy, nutritional therapy, and other "wacky" treatments like fecal transplant. (Some of these I considered more seriously than others, needless to say.) After months of much research, consideration, and consultation with AIT and others being treated with helminths, finally scheduled a trip to Canada to take shipment of 1,250 whipworm ova for November 2010. Just before leaving, I was informed AIT would no longer be shipping to hotels in Canada, and I would need to reschedule my trip to England.
January, 2011--Traveled to England to dose with 1,250 TT ova. All meds remained the same, except for prednisone, which was increased to 10 mg/day to help stave off potential side effects. No change in symptoms or noticable reactions to this dose. (In addition to Asacol, azathioprine, and Remicade, I also take calcium and lutein to counteract the long-term effects of prednisone on my bones and eyes, Vitamin D and a good multi-vitamin for general health, and iron supplements to guard against anemia due to blood loss. All told, I usually take 22 pills each day.)
March, 2011--Made a commitment to improve my diet. Varying theories employed to varying levels of success, but generally, trying to cut down on sugar and wheat, sodas, and dairy. Spent the spring and early summer reading about all kinds of dietary approaches to disease and general health. If I had the discipline, I would be eating a totally plant-based, wheat-free, sugar-free diet. Something to continue to work on.
May, 2011--contacted AIT to let them know there had been no change in my symptoms. Sent stool sample for testing, which confirmed no whipworms present. Meanwhile, my GI doctor reviewed my blood work from previous 6 months looking for increased eosiniphil count (a signal of helminth infection) and found none. Colonoscopy performed, which was third form of confirmation that I had no worms. Results of colonoscopy showed 8 inches of active (VERY active) inflammation. Began daily doses of enemas and suppositories. Second stool sample sent to AIT for confirmation #4 of no worms, while also making plans to travel to Vancouver for a second protocol of whipworm treatment. Theories as to why worms didn't make it: I had an immune reaction that expelled the eggs, the eggs were not viable to begin with, I am deficient in the enzyme that tells the eggs to hatch, I ingested something that compromised the eggs, they just didn't like me, the moon was in the wrong phase when I took them, I didn't say the right chant after ingesting them.....
June, 2011--current symptoms: 5-7 loose b.m.'s, gas, urgency. Bleeding and mucous greatly reduced since beginning enema/suppository treatment one month ago. Started using GI Monitor app to track symptoms. Traveled to Vancouver, where I took possession of 5 doses of TT ova. Ingested a dose of 200 on-site, and will take the other four progressively larger doses monthly through October.
It's kinda tough to see my entire experience of the last fourteen years collapsed into such a small space. Between the lines, you can read in lots of cycles of frustration, depression, guilt, empowerment, strength, hope, regret, acceptance, humor, and pride. Most days, I have all these feelings rolled up into one big burrito of chronic illness. I'm ever-mindful, however, that this experience has been a blessing because it has brought some of the most amazing people into my life, I've learned so much about myself, and it has all made me so much more aware of what people around me deal with every single day. But I'd trade all of that in a heartbeat to make myself healthy again, if somewhat more blissfully unaware.
September, 1997--diagnosed with ulcerative proctitis, after a six week battle with unrelenting diarrhea, cramps, bleeding, etc. After diagnosis and a quick round of high-dose prednisone, I rebounded and remained stable for a couple of years on a relatively low dose of sulfasalazine (the generic 5-ASA treatment that's been commonly prescribed for IBDs since the diseases were first described in the 1930s.)
August, 1999--pre-wedding stress led to a mild flare, treated successfully with an additional course of prednisone.
Somewhere between then and now--my disease became more and more difficult to control, prompting a change in diagnosis to left-sided ulcerative colitis and requiring more and stronger maintenance meds, plus more frequent rounds of prednisone. Started on Asacol (a higher-dose 5-ASA than sulfasalazine), azathioprine, hydrocortisone foam enemas, 5-ASA enemas, 5-ASA suppositories, all-liquid diets, acupuncture, and finally, Remicade infusions every 8 weeks. Remicade originally prompted remission, but when I developed jaundice, we discontinued both the Remicade and azathioprine. Maintained remission for several months, but I started to flare again in July 2008.
August, 2008--restarted Remicade and azathioprine at 5 mg/kg every 6 weeks. Stabilized, but have not achieved remission.
Sometime in 2009--increased dose and frequency of Remicade. No change in symptoms. Up to 5-7 loose b.m.'s/day, high urgency, cramping, bleeding and mucous. Mornings are the worst; I'm usually (but not always) ok if I can just make it to lunchtime.
March, 2010--began serious consideration of helminthic therapy, while also exploring other options such as specific carbohydrate diet, complete colonectomy, nutritional therapy, and other "wacky" treatments like fecal transplant. (Some of these I considered more seriously than others, needless to say.) After months of much research, consideration, and consultation with AIT and others being treated with helminths, finally scheduled a trip to Canada to take shipment of 1,250 whipworm ova for November 2010. Just before leaving, I was informed AIT would no longer be shipping to hotels in Canada, and I would need to reschedule my trip to England.
January, 2011--Traveled to England to dose with 1,250 TT ova. All meds remained the same, except for prednisone, which was increased to 10 mg/day to help stave off potential side effects. No change in symptoms or noticable reactions to this dose. (In addition to Asacol, azathioprine, and Remicade, I also take calcium and lutein to counteract the long-term effects of prednisone on my bones and eyes, Vitamin D and a good multi-vitamin for general health, and iron supplements to guard against anemia due to blood loss. All told, I usually take 22 pills each day.)
March, 2011--Made a commitment to improve my diet. Varying theories employed to varying levels of success, but generally, trying to cut down on sugar and wheat, sodas, and dairy. Spent the spring and early summer reading about all kinds of dietary approaches to disease and general health. If I had the discipline, I would be eating a totally plant-based, wheat-free, sugar-free diet. Something to continue to work on.
May, 2011--contacted AIT to let them know there had been no change in my symptoms. Sent stool sample for testing, which confirmed no whipworms present. Meanwhile, my GI doctor reviewed my blood work from previous 6 months looking for increased eosiniphil count (a signal of helminth infection) and found none. Colonoscopy performed, which was third form of confirmation that I had no worms. Results of colonoscopy showed 8 inches of active (VERY active) inflammation. Began daily doses of enemas and suppositories. Second stool sample sent to AIT for confirmation #4 of no worms, while also making plans to travel to Vancouver for a second protocol of whipworm treatment. Theories as to why worms didn't make it: I had an immune reaction that expelled the eggs, the eggs were not viable to begin with, I am deficient in the enzyme that tells the eggs to hatch, I ingested something that compromised the eggs, they just didn't like me, the moon was in the wrong phase when I took them, I didn't say the right chant after ingesting them.....
June, 2011--current symptoms: 5-7 loose b.m.'s, gas, urgency. Bleeding and mucous greatly reduced since beginning enema/suppository treatment one month ago. Started using GI Monitor app to track symptoms. Traveled to Vancouver, where I took possession of 5 doses of TT ova. Ingested a dose of 200 on-site, and will take the other four progressively larger doses monthly through October.
It's kinda tough to see my entire experience of the last fourteen years collapsed into such a small space. Between the lines, you can read in lots of cycles of frustration, depression, guilt, empowerment, strength, hope, regret, acceptance, humor, and pride. Most days, I have all these feelings rolled up into one big burrito of chronic illness. I'm ever-mindful, however, that this experience has been a blessing because it has brought some of the most amazing people into my life, I've learned so much about myself, and it has all made me so much more aware of what people around me deal with every single day. But I'd trade all of that in a heartbeat to make myself healthy again, if somewhat more blissfully unaware.
Friday, May 27, 2011
From Glad to Sad to Mad and Back Again
I'm glad to report I had a terrific colonoscopy yesterday! YAY! No, seriously, I was really happy to participate in this little procedure since it's the only way to really know what's going on in there. As with most things, there's good news and bad. Good news: the inflammation is limited to the last 20 cm (about 8 inches) of my digestive tract. Bad news: that last 20 cm looks pretty bad. Ulceration, bleeding, mucus--it's pretty icky. Good news: increasing the meds that have a systemic effect (i.e. prednisone) probably isn't warranted. Bad news: Making enemas and suppositories a regular part of my regimen probably IS warranted. Good news: At least there's something different I can try. Bad news: I've actually used these treatments before, to little effect. All that, plus, no sign of the worms on that colonoscopy. That was a big disappointment, even though I should have already known, since my stool sample tested negative.
I wore my "I (heart) Nancy's :" t-shirt to the endoscopy clinic and was really pleased that all the staff appreciated the joke. A few people in the waiting room glanced at me like I'm nuts, but hey, I probably am a little nuts, so that's okay.
As an aside to any readers who are "of age" for colon cancer screening: I've done it four times now, and I'm here to tell you this procedure is NO BIG DEAL and is a much better way to go than to put yourself at risk for colon cancer. No, it's not pleasant. Sure, the prep sucks. Yes, it's a little difficult to willingly put yourself in such a vulnerable position. But the drugs are pretty good, and seriously, it's so much better than even the risk of colon cancer. So go get yerself checked, people.
I spent a little time this a.m. looking back over my posts on this blog, and I am just completely overwhelmed with sadness. What a waste. All that time, I was so hopeful, cracking jokes about "the Union," talking about how I had to step it up in my eating habits to help those worms along, etc. All that, and come to find out, nearly 6 months later, those little guys were never there in the first place. After spending about 9 months setting up this treatment, scheduling travel to one foreign country, cancelling that, re-scheduling on short notice to another foreign country, feeling like crap this whole time....
Mother-f***er. Arrrrgh. (Oops. Looks like I just slipped from "sad" to "mad.") OK. Gotta come to terms with it. "Mad" is not a good place for me to be. Sigh. Alright. Take a deep breath. Stay focused on "what now?" You can do this.
I'm not done with this treatment, even though I don't know why it didn't work out the first time, and even though I'm having a heck of a time getting the next treatment set up. I don't think it's the worms' fault this hasn't worked out so far; I think that responsibility lies strictly in the realm of us humans. So I'm going to keep forging ahead, and hoping that in ANOTHER 6 months, I have better news to report. (god, seriously? ANOTHER 6 months?)
Ok. Better to just admit it. This is a pretty "down" day and I'm not going to be able to talk myself out of feeling really bummed. Even though I'm wearing the t-shirt, truth is, I don't really love my colon so much just now. I'll just check in again when I'm in a better place...
I wore my "I (heart) Nancy's :" t-shirt to the endoscopy clinic and was really pleased that all the staff appreciated the joke. A few people in the waiting room glanced at me like I'm nuts, but hey, I probably am a little nuts, so that's okay.
As an aside to any readers who are "of age" for colon cancer screening: I've done it four times now, and I'm here to tell you this procedure is NO BIG DEAL and is a much better way to go than to put yourself at risk for colon cancer. No, it's not pleasant. Sure, the prep sucks. Yes, it's a little difficult to willingly put yourself in such a vulnerable position. But the drugs are pretty good, and seriously, it's so much better than even the risk of colon cancer. So go get yerself checked, people.
I spent a little time this a.m. looking back over my posts on this blog, and I am just completely overwhelmed with sadness. What a waste. All that time, I was so hopeful, cracking jokes about "the Union," talking about how I had to step it up in my eating habits to help those worms along, etc. All that, and come to find out, nearly 6 months later, those little guys were never there in the first place. After spending about 9 months setting up this treatment, scheduling travel to one foreign country, cancelling that, re-scheduling on short notice to another foreign country, feeling like crap this whole time....
Mother-f***er. Arrrrgh. (Oops. Looks like I just slipped from "sad" to "mad.") OK. Gotta come to terms with it. "Mad" is not a good place for me to be. Sigh. Alright. Take a deep breath. Stay focused on "what now?" You can do this.
I'm not done with this treatment, even though I don't know why it didn't work out the first time, and even though I'm having a heck of a time getting the next treatment set up. I don't think it's the worms' fault this hasn't worked out so far; I think that responsibility lies strictly in the realm of us humans. So I'm going to keep forging ahead, and hoping that in ANOTHER 6 months, I have better news to report. (god, seriously? ANOTHER 6 months?)
Ok. Better to just admit it. This is a pretty "down" day and I'm not going to be able to talk myself out of feeling really bummed. Even though I'm wearing the t-shirt, truth is, I don't really love my colon so much just now. I'll just check in again when I'm in a better place...
Friday, May 20, 2011
Taking Steps Against IBD
Did you know that there's a non-profit organization that has had a hand in developing every major advance in IBD treatment in the last 40 years? Did you know that this same organization sends hundreds of kids with IBD to camp every summer so they will have a chance to feel like a "normal" kid while building a valuable network of other kids who know what they go through every day? Did you know they provide tons of valuable info to the 38,000 Americans who are newly-diagnosed each year? Did you know you can support this organization by making a donation to support their Take Steps walk fund-raising event?
It's all true!
You can make a donation to CCFA by going to my very own TEAM NANCY website. Just click here!
I'm not feeling up to walking myself this year, but that just makes the cause all the more meaningful to me. I hope you'll join me in taking a few virtual steps toward a future free from digestive diseases by making a donation.
On behalf of over 1.4 million Americans with IBD, thanks for your support!!
It's all true!
You can make a donation to CCFA by going to my very own TEAM NANCY website. Just click here!
I'm not feeling up to walking myself this year, but that just makes the cause all the more meaningful to me. I hope you'll join me in taking a few virtual steps toward a future free from digestive diseases by making a donation.
On behalf of over 1.4 million Americans with IBD, thanks for your support!!
Wednesday, May 18, 2011
Oh no! I'm Negative!
For those who have been so kind as to say that they appreciate the way I'm always so upbeat and positive about my whole experience with IBD, I've got news. It has now been medically proven that in fact, I am negative!
A few weeks ago I contacted the good folks at AIT to let them know I wasn't seeing any effects from my wormy little pals yet. I knew that it was possibly too early to tell, but I wanted to just touch base in case there was reason to be concerned. I didn't want to wait several more months and then have them say, "Why didn't you tell us sooner that nothing was happening?"
Until just recently, I've been okay with the idea that, Hey, maybe this is just going to take a little longer, or you know, I had a pretty good last couple of days--maybe those little worms are getting started. But within the last three weeks or so, I've just felt like those rose-colored glasses might be getting a little bit tight, you know?
Still, I was a little surprised when Jasper (my worm wrangler) didn't just tell me, "It's okay. You just need to hang in there maybe 4 to 6 more weeks. Let's keep an eye on things." Instead, he wanted me to send a stool sample right away so they could test for presence of whipworms. (Very funny story about filling out the customs form for that very special package. I'll save that for another time.) Plus, he wanted me to start making plans right away to receive at least 2 more doses of helminth ova. That means I would need to schedule foreign travel--at least 2 more trips.
My initial reaction was, "Whoa! Slow down there, fella!" Sure, I will ship you a vial of my poop so we can see what's what, and I'll start kinda looking around to think about where and when I could go to get more worms. But I also am due for a colonoscopy soon, so maybe we'll wait and see what visual confirmation we have of what exactly is going on before I make any further plans.
And then, the phone call came.
It was Monday afternoon when Jasper called and said simply, "You're negative." Um. What? "Your stool sample is testing negative for whipworm. They aren't in there. Sorry." Sure, this is exactly why we did the test, to see if this is the situation, but still, when the truth came out, I was kinda dumbfounded. Together, Jasper and I did some quick math to see exactly how long it was since I had ingested the ova. 118 days. Apparently, the "textbook" timeline for when you should start to see evidence of the worms in your stool is 75 days, but Jasper says that for him and for others, 115 days was the magic number, so I'm right on the cusp there. We'll do another stool sample this week to see, but I gotta admit, it looks pretty grim.
So what explains why none of those little guys survived? No idea. Were they not viable to begin with? Did I receive a dose of some inert liquid instead of the powerful 1250 TT ova I was supposed to get? I don't know, but I can tell you that since my tongue and the back of my throat tingled for a while after taking them, I suspect that little vial wasn't full of just water. Did my immune system kick into high gear and push those fellas out? I don't really think my body rejected them because other people to whom that happens report a violent case of diarrhea, fever, etc. soon after inoculation, symptoms I never had.
I don't have an answer for what happened, but kinda like when I got my UC diagnosis, I don't really care how or why--I am more focused on "now what?" (As an aside, it makes me a little bit nuts when folks with IBD obsess about how they got this disease. Was it something in their diet? Is it genetic? Who cares? It's not like if you knew exactly where it came from you could reverse course. You've got it now, you're going to have it forever, so get over what happened and start looking at what you're going to do now. But that's just me....)
As for me, the answer to "now what?" is that I am going to step up the plan to get more worms, and toute de suite. I started down this path over a year ago now, and can't believe I have nothing to show for it yet, except a big hole in my savings account and a few stamps in my passport. But I am definitely not done with this treatment yet. I could handle the news (I think) that, "Hey, they're in there, doing their happy little wiggly dance, but it just looks like they aren't going to help you. Sorry!" But I cannot abide, "Well, they just didn't survive. Oops."
Someone asked me a few weeks ago how I'm doing and I spelled all this out for them and they said, "Yeah, well you just want to see this through and then you can move on to the next thing if you need to." But you know what? There IS no "next thing" for me. As far as I can see, what's left for me are two options that really aren't on the table: surgical removal of my colon, and massive dietary overhaul. I've looked into both, and I am not a very good candidate for surgery, and the kind of diet we're talking about would be so soul crushing, that really, my life would have to actually be on the line, in a very real and immediate way, for me to take that on.
So that's where I'm at right now. I'm negative, but trying to remain positive. Staying hopeful that in the next few weeks, I will ingest some more wigglers and be on my way to health and happiness. Sure, I'm disappointed that I'm not already there, but over the 14 years I've been dealing with this disease, I've been up and down so many times, I know the drill. You just keep on keepin' on.
A few weeks ago I contacted the good folks at AIT to let them know I wasn't seeing any effects from my wormy little pals yet. I knew that it was possibly too early to tell, but I wanted to just touch base in case there was reason to be concerned. I didn't want to wait several more months and then have them say, "Why didn't you tell us sooner that nothing was happening?"
Until just recently, I've been okay with the idea that, Hey, maybe this is just going to take a little longer, or you know, I had a pretty good last couple of days--maybe those little worms are getting started. But within the last three weeks or so, I've just felt like those rose-colored glasses might be getting a little bit tight, you know?
Still, I was a little surprised when Jasper (my worm wrangler) didn't just tell me, "It's okay. You just need to hang in there maybe 4 to 6 more weeks. Let's keep an eye on things." Instead, he wanted me to send a stool sample right away so they could test for presence of whipworms. (Very funny story about filling out the customs form for that very special package. I'll save that for another time.) Plus, he wanted me to start making plans right away to receive at least 2 more doses of helminth ova. That means I would need to schedule foreign travel--at least 2 more trips.
My initial reaction was, "Whoa! Slow down there, fella!" Sure, I will ship you a vial of my poop so we can see what's what, and I'll start kinda looking around to think about where and when I could go to get more worms. But I also am due for a colonoscopy soon, so maybe we'll wait and see what visual confirmation we have of what exactly is going on before I make any further plans.
And then, the phone call came.
It was Monday afternoon when Jasper called and said simply, "You're negative." Um. What? "Your stool sample is testing negative for whipworm. They aren't in there. Sorry." Sure, this is exactly why we did the test, to see if this is the situation, but still, when the truth came out, I was kinda dumbfounded. Together, Jasper and I did some quick math to see exactly how long it was since I had ingested the ova. 118 days. Apparently, the "textbook" timeline for when you should start to see evidence of the worms in your stool is 75 days, but Jasper says that for him and for others, 115 days was the magic number, so I'm right on the cusp there. We'll do another stool sample this week to see, but I gotta admit, it looks pretty grim.
So what explains why none of those little guys survived? No idea. Were they not viable to begin with? Did I receive a dose of some inert liquid instead of the powerful 1250 TT ova I was supposed to get? I don't know, but I can tell you that since my tongue and the back of my throat tingled for a while after taking them, I suspect that little vial wasn't full of just water. Did my immune system kick into high gear and push those fellas out? I don't really think my body rejected them because other people to whom that happens report a violent case of diarrhea, fever, etc. soon after inoculation, symptoms I never had.
I don't have an answer for what happened, but kinda like when I got my UC diagnosis, I don't really care how or why--I am more focused on "now what?" (As an aside, it makes me a little bit nuts when folks with IBD obsess about how they got this disease. Was it something in their diet? Is it genetic? Who cares? It's not like if you knew exactly where it came from you could reverse course. You've got it now, you're going to have it forever, so get over what happened and start looking at what you're going to do now. But that's just me....)
As for me, the answer to "now what?" is that I am going to step up the plan to get more worms, and toute de suite. I started down this path over a year ago now, and can't believe I have nothing to show for it yet, except a big hole in my savings account and a few stamps in my passport. But I am definitely not done with this treatment yet. I could handle the news (I think) that, "Hey, they're in there, doing their happy little wiggly dance, but it just looks like they aren't going to help you. Sorry!" But I cannot abide, "Well, they just didn't survive. Oops."
Someone asked me a few weeks ago how I'm doing and I spelled all this out for them and they said, "Yeah, well you just want to see this through and then you can move on to the next thing if you need to." But you know what? There IS no "next thing" for me. As far as I can see, what's left for me are two options that really aren't on the table: surgical removal of my colon, and massive dietary overhaul. I've looked into both, and I am not a very good candidate for surgery, and the kind of diet we're talking about would be so soul crushing, that really, my life would have to actually be on the line, in a very real and immediate way, for me to take that on.
So that's where I'm at right now. I'm negative, but trying to remain positive. Staying hopeful that in the next few weeks, I will ingest some more wigglers and be on my way to health and happiness. Sure, I'm disappointed that I'm not already there, but over the 14 years I've been dealing with this disease, I've been up and down so many times, I know the drill. You just keep on keepin' on.
Tuesday, April 26, 2011
I'm not alone!
Just wanted to share with y'all a few things out there on the interwebs that prove that I am not the only one suffering from UC. Sometimes that's hard to remember, when you've got a disease that is played out in the most private of places, the bathroom.
First, please check out an article called "When Nature Calls" from Salon.com wherein a woman shares her experience of being diagnosed with UC at age 26 (And of pooping in her pants. A lot. Sound familiar?) After you read it, I encourage you to take a minute to peruse some of the reader comments. Muy enlightening, I must say.
Also, I want to share a link to my friend Mel's "MeMercial," a very brief video from her production company, Denver Mind Media, about her husband's fight against Crohn's. Although the images she uses are so powerful, what strikes me most is what she left out: the multiple hospital visits, the mounting medical bills, the overwhelming concern and helplessness about his endless battle....But those are just my reactions. Here's Mel's vision of what Crohn's looks like: http://youtu.be/w9zWNEe0Buo
Yes, it's Take Steps walk season at the ol' CCFA, and y'all know I am a big believer in this event's mission to raise money for research, support services, and education about IBD. Most of all, it's an important way for all 1.4 million people in the U.S. with Crohn's and colitis to do something POSITIVE about having these dumb diseases. Talk about not being alone: just in Denver, as many as 2,000 people will show up at the walk. So please, please, please do what you can to support this very determined tribe. Go to cctakesteps.org now to find your local event and donate.
One more note about this thought that "I am not alone": one of the blessings of my journey with UC (yes, there have been a few!) has been becoming more fully aware that while I have this burden, my friends and family all struggle with their own problems, the guy next to me at the red light has issues, that little old lady at the grocery store is dealing with something, and on and on and on. So when I say I'm not alone, what I mean is I am grateful for the knowledge that this is just the human condition I'm dealing with. My personal "human condition" is not great, but how comforting to know we're all in it together, no? (At least, that's my take on it today. But woe be to the first person to cut me off in the parking lot! My "kum-bay-ya" attitude could turn on a dime!)
First, please check out an article called "When Nature Calls" from Salon.com wherein a woman shares her experience of being diagnosed with UC at age 26 (And of pooping in her pants. A lot. Sound familiar?) After you read it, I encourage you to take a minute to peruse some of the reader comments. Muy enlightening, I must say.
Also, I want to share a link to my friend Mel's "MeMercial," a very brief video from her production company, Denver Mind Media, about her husband's fight against Crohn's. Although the images she uses are so powerful, what strikes me most is what she left out: the multiple hospital visits, the mounting medical bills, the overwhelming concern and helplessness about his endless battle....But those are just my reactions. Here's Mel's vision of what Crohn's looks like: http://youtu.be/w9zWNEe0Buo
Yes, it's Take Steps walk season at the ol' CCFA, and y'all know I am a big believer in this event's mission to raise money for research, support services, and education about IBD. Most of all, it's an important way for all 1.4 million people in the U.S. with Crohn's and colitis to do something POSITIVE about having these dumb diseases. Talk about not being alone: just in Denver, as many as 2,000 people will show up at the walk. So please, please, please do what you can to support this very determined tribe. Go to cctakesteps.org now to find your local event and donate.
One more note about this thought that "I am not alone": one of the blessings of my journey with UC (yes, there have been a few!) has been becoming more fully aware that while I have this burden, my friends and family all struggle with their own problems, the guy next to me at the red light has issues, that little old lady at the grocery store is dealing with something, and on and on and on. So when I say I'm not alone, what I mean is I am grateful for the knowledge that this is just the human condition I'm dealing with. My personal "human condition" is not great, but how comforting to know we're all in it together, no? (At least, that's my take on it today. But woe be to the first person to cut me off in the parking lot! My "kum-bay-ya" attitude could turn on a dime!)
Wednesday, March 30, 2011
Word for the Day: Tenesmus
Today, ladies and gents, I thought we'd expand your vocabulary by introducing you to a word I'd never heard before developing ulcerative colitis: tenesmus. No, I'm not talking about that disease you can get if you step on a rusty nail (that's tetanus), nor am I referring to something related to my favorite racquet sport, tennis. Tenesmus is defined by Merriam-Webster as "a distressing but ineffectual urge to evacuate the rectum or bladder."
That's all well and good, but I can tell you, friends, that when the rubber hits the road, the neutral language of a dictionary definition cannot begin to explain the frustration caused by the condition known as tenesmus. All y'all who have healthy poopers take something very important for granted: the ability to judge when you need to have a bowel movement. I bet it has never even occurred to you to second-guess your body when it tells you, "Hey! I think I need to poop. And it would be a good idea if you could get to a bathroom so I can do that soon. Thanks!"
But the most persistent and distressing effect of having an inflammatory bowel disease is the inability to trust your body's impulses on this front. On one hand, I can be cruising along, having a terrific day, when all of a sudden (and I do mean "sudden") I feel a little cramp in my belly that tells me it's time to get to a bathroom, and I mean NOW. Depending on the situation, I may have 15 seconds to get to the bathroom, or, if I'm really lucky, I can wait 15 minutes. For grins, how about the next time you become even remotely aware that you have to go to the bathroom, you set the timer on your watch to see how long it takes to become an urgent need. I will bet you real money that it's A LOT longer than 15 minutes. In fact, I bet it takes longer than 15 minutes for you to even become aware of the need in the first place. But I digress....
After dealing with this urgency symptom for a while, I started to notice something a little different going on: I would feel the urge, race to the bathroom, and then.....nothing. Or maybe pass just a little bit of stool and some gas. But not anything close to the poop-storm that it felt like was brewing, due to the urgency feeling. So I'd sit on the toilet, straining, for a few minutes, and still....nothing. Afraid to leave the bathroom, due to past experiences with walking away from the toilet only to run right back again, I would stay in the bathroom for extended periods but never seem to "produce."
Finally, I asked my doc, "What gives?" "Tenesmus," he said. "What we have here is a rectum that can no longer properly detect the urgency of need of removal. The inflammation has become so intractable that when any bit of matter reaches the rectum, it sends a signal that the load is too much and must be evacuated immediately. It's called tenesmus."
Great. So it has a name, but what do we do about it? "Not much you can do about it, except get the inflammation down in general and hope that the rectum recovers once you achieve remission." Because the rectum is pretty much the last stop of your digestive tract, sometimes you can treat it with topical medications to help with the inflammation. This is where you get into the territory of the most glamorous of UC treatments, the enema and the suppository. As you can imagine, it can be much more effective to treat this area via the anus rather than sending an oral medication all the way through your digestive tract and hope that it is still viable once it reaches the end of the line.
You may have already noticed, intrepid reader, that one of the most frustrating things about having UC is that my symptoms are a moving target. No two days are ever alike, and things always seem to be in a state of flux, depending on who knows what variables. So, fortunately, I don't always have to deal with tenesmus, but it's what I've got going on in spades right now. I am spending a lot of quality time with my toilet, kinda just waiting for things to happen. It's not like constipation, because I don't feel any kind of bloating or discomfort in my belly, just this kind of spastic feeling in my rectum.
But the other thing is, I am spending even more time trying to second guess that urgency feeling. Because it happens so frequently, and so often going to the bathroom is so ineffective, I have taken to trying to judge whether my rectum is just freaking out or whether this time is the real deal. And as you can imagine, I don't always guess correctly. You know what this is like, if you can remember back to when you were very young and trying to learn how urgent nature's call really was. As a 4 or 5 year old, everyone understands if you haven't quite mastered this skill and end up soiling your underroos at pre-school. Once you're 8 or 9, having an accident while sleeping over at a friend's house could ruin your social life for years. And here I am, staring down my 42nd birthday, and having the same issues. God, I hate this disease.
So there you go, gang. Tenesmus. Now that you know it, try to using it in a sentence just once today. Something like, "Thank God I've never known what it is to have chronic tenesmus," would be a good start.
That's all well and good, but I can tell you, friends, that when the rubber hits the road, the neutral language of a dictionary definition cannot begin to explain the frustration caused by the condition known as tenesmus. All y'all who have healthy poopers take something very important for granted: the ability to judge when you need to have a bowel movement. I bet it has never even occurred to you to second-guess your body when it tells you, "Hey! I think I need to poop. And it would be a good idea if you could get to a bathroom so I can do that soon. Thanks!"
But the most persistent and distressing effect of having an inflammatory bowel disease is the inability to trust your body's impulses on this front. On one hand, I can be cruising along, having a terrific day, when all of a sudden (and I do mean "sudden") I feel a little cramp in my belly that tells me it's time to get to a bathroom, and I mean NOW. Depending on the situation, I may have 15 seconds to get to the bathroom, or, if I'm really lucky, I can wait 15 minutes. For grins, how about the next time you become even remotely aware that you have to go to the bathroom, you set the timer on your watch to see how long it takes to become an urgent need. I will bet you real money that it's A LOT longer than 15 minutes. In fact, I bet it takes longer than 15 minutes for you to even become aware of the need in the first place. But I digress....
After dealing with this urgency symptom for a while, I started to notice something a little different going on: I would feel the urge, race to the bathroom, and then.....nothing. Or maybe pass just a little bit of stool and some gas. But not anything close to the poop-storm that it felt like was brewing, due to the urgency feeling. So I'd sit on the toilet, straining, for a few minutes, and still....nothing. Afraid to leave the bathroom, due to past experiences with walking away from the toilet only to run right back again, I would stay in the bathroom for extended periods but never seem to "produce."
Finally, I asked my doc, "What gives?" "Tenesmus," he said. "What we have here is a rectum that can no longer properly detect the urgency of need of removal. The inflammation has become so intractable that when any bit of matter reaches the rectum, it sends a signal that the load is too much and must be evacuated immediately. It's called tenesmus."
Great. So it has a name, but what do we do about it? "Not much you can do about it, except get the inflammation down in general and hope that the rectum recovers once you achieve remission." Because the rectum is pretty much the last stop of your digestive tract, sometimes you can treat it with topical medications to help with the inflammation. This is where you get into the territory of the most glamorous of UC treatments, the enema and the suppository. As you can imagine, it can be much more effective to treat this area via the anus rather than sending an oral medication all the way through your digestive tract and hope that it is still viable once it reaches the end of the line.
You may have already noticed, intrepid reader, that one of the most frustrating things about having UC is that my symptoms are a moving target. No two days are ever alike, and things always seem to be in a state of flux, depending on who knows what variables. So, fortunately, I don't always have to deal with tenesmus, but it's what I've got going on in spades right now. I am spending a lot of quality time with my toilet, kinda just waiting for things to happen. It's not like constipation, because I don't feel any kind of bloating or discomfort in my belly, just this kind of spastic feeling in my rectum.
But the other thing is, I am spending even more time trying to second guess that urgency feeling. Because it happens so frequently, and so often going to the bathroom is so ineffective, I have taken to trying to judge whether my rectum is just freaking out or whether this time is the real deal. And as you can imagine, I don't always guess correctly. You know what this is like, if you can remember back to when you were very young and trying to learn how urgent nature's call really was. As a 4 or 5 year old, everyone understands if you haven't quite mastered this skill and end up soiling your underroos at pre-school. Once you're 8 or 9, having an accident while sleeping over at a friend's house could ruin your social life for years. And here I am, staring down my 42nd birthday, and having the same issues. God, I hate this disease.
So there you go, gang. Tenesmus. Now that you know it, try to using it in a sentence just once today. Something like, "Thank God I've never known what it is to have chronic tenesmus," would be a good start.
Tuesday, March 22, 2011
Food Fight!
"Eating good for my belly is crushing my soul."--Me, as I stared down my third bowl of quinoa gruel in as many days.
Ahoy, mateys! I can't believe it's been a month since I last posted, but I haven't had much news to report. That is, unless you count numerous episodes of public pooping, overnight cramping, or rectal bleeding as news.
You do count all that as news? Oh. In that case, I'd better fill you in....
Once I came back from my trip to the mountains with my friends, I had a little "come to Jesus" talk with myself about getting on track and doing my part to help my little "passengers" achieve their mission. To me, that means watching my diet, and that, in turn, means eating smaller meals, eating less challenging foods, and cutting way back on sweets, wheat, and caffeine.
So for the last few weeks, I've been trying to follow this advice--with a break for St. Patrick's Day--but it hasn't done me any good, at least not in terms of easing my symptoms. Still running to the bathroom at inopportune times, still getting tummy grumbles after eating anything at all, still having unexplained cramping overnight and seeing too much blood in the toilet. I'll admit I'm not the most stringent follower of these dietary guidelines, but shouldn't the modest improvements I have made be yielding any kind of benefit?
(Many of my IBD friends will read that and shake their heads, and as they sip delicately from their small cup of organic green tea with kombucha brewed for exactly 3 minutes with pure spring water, they will think to themselves, "C'mon Nancy. You know there is no 'try.' There is only 'do.'" And others will gulp from their super grande moccachinos and think, "Yeah, it's just not fair.")
Meanwhile, I have been continuing to drop my prednisone dose by one mg./day per week and am now down to 5 mg. However, I've decided to settle in at this dose and see if I can stabilize before I go any further.
Sure, it's a little discouraging. I am now about 9 weeks out from when I introduced those little whipworms into my system, and although I know darn well that different people react differently, deep down, I thought I'd be one of those people who started to feel better within just a few weeks. But now that I think about it, I'm not even sure how that's possible, since those little buggers are probably not even all grown up and attached to my colon yet. If you check out the lifecycle of the whipworm on wikipedia, they'll tell you it takes up to three months for those babies to grow up and go to work. (For what that's worth.)
But what I'm dealing with now is not even so much about what's taking those worms so long to get going, I'm in the throes now about worrying about the persistence of some of the worst of my symptoms. Had there been no worms and I was having these symptoms, I'd probably be in my dr.'s office right now talking about where to go now, even though I know the answer would basically be a shrug of the shoulders and a sheepish, "Maybe we should increase your prednisone....?" So instead, I'm just kind of trying to ride it out, hopeful that in just a few more weeks, things will be looking up.
In the meantime, life is getting in the way of this little medical experiment of mine. After leaving a job interview last week, I found myself driving to my next appointment and realizing that I had probably 2 minutes to find a bathroom. Well, guess what? I didn't make it. So then, instead of being on my way to that appointment, I found myself turning the car around and driving home to clean myself up and change my clothes before getting back on track and finishing my errands as if nothing had happened. I got through the afternoon and evening okay, but the next day was AWFUL...I spent the whole day in bed. I was achy and had tons of muscle soreness. My brain felt foggy and I was exhausted. Oh yes, and dehydrated. So dehydrated.
Once I felt better, things got back to normal a little bit. This Sunday, John and I even resumed our weekly trip to the grocery store via bicycle. I love that little warm weather ritual. But of course, we got not halfway through the store before I had to make a mad dash to the bathroom. And then, not 10 minutes later, I had to abandon our cart in the dairy section for another trip to the loo. Imagine all that, and then realizing, "Hmmm. And now I have to ride a bicycle loaded with 20 pounds of groceries home." At least it's only a few miles, and all downhill, at that!
All of this makes it sound like things have been unrelentingly bad for the last few weeks, and that's just not true. It's just that I have had a few more "bad days" and those days have been a bit worse than I'm used to. Even though I didn't feel great yesterday, I was able to walk my dog without incident, and even jog around the neighborhood park a little. But, on the flip side, I didn't feel confident enough to go for a long walk with a friend. Today I have another job interview, and you'd better believe I'm going to leave myself plenty of time for a bathroom stop beforehand AND make sure I visit the loo again afterward. But then I'm meeting a friend for a drink this afternoon--and who knows, if I'm feeling okay, maybe I will sip on an actual DRINK.
As I've been saying from the beginning, my friends, this is a journey I'm on. And right now, it's a roller coaster ride more than anything else. As usual, I'll just hang in there and keep trying to live a normal life. Or some semblance thereof.
Wednesday, February 23, 2011
There Is No Free Lunch
I am reminded today that just because I have these awesome little creatures doing their best to bring my immune system under control, I am NOT off the hook for doing MY best to bring my immune system under control. That is to say, I am still responsible for taking care of myself; I have not abdicated that responsibility just because someone else is on the job.
To explain: I just came home from a long weekend with friends in the mountains. And although we sell it to ourselves as four days of playing in the snow, the truth is (for me, at least) that it is an extended opportunity to eat, drink, and shun sleep in favor of booze-fueled late night snowshoe expeditions. I don't want to make it sound like I run with a pack of gluttons, but the truth is, we love good food, good drink, and each other enough to spend days on end indulging ourselves, with breaks in the action for a little skiing, a little sledding, a little snowshoeing, etc.
I was nervous about this trip. I had no idea how my tummy would deal with all the mayhem I was about to throw at it. I was worried how I would do in a house of 16 adults, 8 kids, and 7 dogs (and three bathrooms.) Add to that the fact that my safety net, John, wouldn't be there, and I was not sure what to expect. But for the most part, my delicate system dealt pretty well. Sure, my tummy hurt pretty much the whole time, I passed a fair amount of blood every time I went to the bathroom, and I felt the need to back off some of those outdoor activities, given the uncertain proximity to the loo. But there were no "urgency emergencies," I didn't have to jump out of bed in the morning to run to the bathroom once, and I even got to enjoy my morning coffee without much ado.
And now, I ask you to re-read that paragraph and tell me what's wrong here. Go ahead. I'll wait while you re-read it.
Done? OK, so did you notice that my whole attitude was about what my tummy did to me to make my life a challenge and not at all about what I did to make life hard on my tummy? Let's start with the most obvious: food. Who in their right mind thinks they can eat two Thanksgiving-sized meals a day, plus plentiful snacks, without repercussion? And really, I shouldn't be chugging the amount of coffee that I did on this trip, but it seemed like the thing to do, especially since I was chronically tired from going to bed a little too late and tossing and turning a bit due to the stomach cramps. Which brings up the issue of sleep: I know as well as I know my own name that getting too little sleep, and especially in a "travel" situation, is asking for trouble. At least I was smart enough to not put myself in the situation where I would need to find a bathroom ASAP out in the middle of a snowshoe hike, but maybe there would not have been any reason to fear that if I had not filled my system with lots of rich foods, a fair amount of beer, and plenty of salty/sweet snacks.
Given all this, I'm pleased that I survived the weekend OK, but the uncanny thing is that I was not 15 minutes into the hour and a half ride home before I had to find a bathroom ASAP. The poor ladies at the gas station were totally startled as I came flying into the store and flung myself down the hall to the restroom, where I locked myself for a good 10 minutes. I got home fine after that, but my whole afternoon was one trip to the bathroom after another until I finally fell asleep on the sofa. Sometimes, my body gives me a break when it needs to, but the bill always comes due.
So I got my come-uppance (and I'm still getting it today, unfortunately.) And even though I know this already, I am reminded oh-so-vividly that I am still responsible for taking care of myself, and my whipworms are just one tool I have to do that. I still need to watch what I eat, get a decent amount of exercise, and heed my body's cries for ample sleep. If I don't do these things, or at least make a good faith effort, it will not matter how many pills I take, how many Remicade infusions I get, or how many helminths I have burrowing into my colon--I will still be sick. It's just a reminder that the Union is a team, we're all working toward the same goal, and it's no fair if I sabotage the team's effort by not controlling the things I--and only I--can.
The next time I'm indulging myself (and let's face it: there WILL be a next time) I'm going to remind myself that as much as I love good food, good drink, and good times with good friends, there is no free lunch. You're gonna pay, and maybe, just maybe, it's better to pay upfront by missing out on a few big meals, a couple of tasty beers, or a couple of late nights than it is to make life that much harder on the Union.
To explain: I just came home from a long weekend with friends in the mountains. And although we sell it to ourselves as four days of playing in the snow, the truth is (for me, at least) that it is an extended opportunity to eat, drink, and shun sleep in favor of booze-fueled late night snowshoe expeditions. I don't want to make it sound like I run with a pack of gluttons, but the truth is, we love good food, good drink, and each other enough to spend days on end indulging ourselves, with breaks in the action for a little skiing, a little sledding, a little snowshoeing, etc.
I was nervous about this trip. I had no idea how my tummy would deal with all the mayhem I was about to throw at it. I was worried how I would do in a house of 16 adults, 8 kids, and 7 dogs (and three bathrooms.) Add to that the fact that my safety net, John, wouldn't be there, and I was not sure what to expect. But for the most part, my delicate system dealt pretty well. Sure, my tummy hurt pretty much the whole time, I passed a fair amount of blood every time I went to the bathroom, and I felt the need to back off some of those outdoor activities, given the uncertain proximity to the loo. But there were no "urgency emergencies," I didn't have to jump out of bed in the morning to run to the bathroom once, and I even got to enjoy my morning coffee without much ado.
And now, I ask you to re-read that paragraph and tell me what's wrong here. Go ahead. I'll wait while you re-read it.
Done? OK, so did you notice that my whole attitude was about what my tummy did to me to make my life a challenge and not at all about what I did to make life hard on my tummy? Let's start with the most obvious: food. Who in their right mind thinks they can eat two Thanksgiving-sized meals a day, plus plentiful snacks, without repercussion? And really, I shouldn't be chugging the amount of coffee that I did on this trip, but it seemed like the thing to do, especially since I was chronically tired from going to bed a little too late and tossing and turning a bit due to the stomach cramps. Which brings up the issue of sleep: I know as well as I know my own name that getting too little sleep, and especially in a "travel" situation, is asking for trouble. At least I was smart enough to not put myself in the situation where I would need to find a bathroom ASAP out in the middle of a snowshoe hike, but maybe there would not have been any reason to fear that if I had not filled my system with lots of rich foods, a fair amount of beer, and plenty of salty/sweet snacks.
Given all this, I'm pleased that I survived the weekend OK, but the uncanny thing is that I was not 15 minutes into the hour and a half ride home before I had to find a bathroom ASAP. The poor ladies at the gas station were totally startled as I came flying into the store and flung myself down the hall to the restroom, where I locked myself for a good 10 minutes. I got home fine after that, but my whole afternoon was one trip to the bathroom after another until I finally fell asleep on the sofa. Sometimes, my body gives me a break when it needs to, but the bill always comes due.
So I got my come-uppance (and I'm still getting it today, unfortunately.) And even though I know this already, I am reminded oh-so-vividly that I am still responsible for taking care of myself, and my whipworms are just one tool I have to do that. I still need to watch what I eat, get a decent amount of exercise, and heed my body's cries for ample sleep. If I don't do these things, or at least make a good faith effort, it will not matter how many pills I take, how many Remicade infusions I get, or how many helminths I have burrowing into my colon--I will still be sick. It's just a reminder that the Union is a team, we're all working toward the same goal, and it's no fair if I sabotage the team's effort by not controlling the things I--and only I--can.
The next time I'm indulging myself (and let's face it: there WILL be a next time) I'm going to remind myself that as much as I love good food, good drink, and good times with good friends, there is no free lunch. You're gonna pay, and maybe, just maybe, it's better to pay upfront by missing out on a few big meals, a couple of tasty beers, or a couple of late nights than it is to make life that much harder on the Union.
Thursday, February 3, 2011
Breaking Up is Hard to Do
Yesterday I had my first check-up with my GI doc since inoculating (is that the right word?) myself with 1,250 whipworm ova. To say that he is not supportive of this treatment would be, well, putting it mildly. When I first discussed it with him last fall, he kept coming back to the same line: "But it's a PARASITE! You'll have a PARASITE!" So I knew going in to this appointment that this was going to be a tough conversation.
Part of me thought that even though he can't really get behind this, he should at least be intrigued by the possibilities, and since I had already done the deed, he'd be interested to see what happens. But he really wasn't. His immediate reaction was to ask about all my meds and current symptoms, becoming concerned when I told him I've had an uptick in my symptoms and actually increased my prednisone. His thought is that because I am so immuno-compromised through my meds, the introduction of the parasite is going to render me completely unable to fend off even the most minor of infections. (To which I say, how come I haven't had so much as a sniffle while John has been fending off one lousy cold after another this winter? Why aren't all the scrapes and scratches I keep getting from trying to keep Scooby the cat entertained turning into raging, pus-y infections?)
Anyway, I told him that first and foremost, I wanted him to know that if he is uncomfortable continuing as my doctor, that's fine, and he should just tell me and I'll move on. He said no, he's not going to toss me out, but now that I've "gone and done this to myself," his main job is to protect me and look out for potential problems. Meanwhile I'm thinking, "What about the potential remission? What about the potential upside?" But he just doesn't see it.
Through the course of conversation, I realized that even if I have a miraculous recovery, he will not believe it's due to the parasites. "It's a totally uncontrolled experiment," he says. "Maybe you would have just gotten better on your own anyway." Now, I ask you, my friends, how likely is it that I would have a spontaneous remission on the exact same medical regimen I have been on for more than a year? I just felt like this is crazy talk. I don't think you have to be a "man of science" to see that just doesn't make any sense.
But I get where he's coming from. This is a guy with a background in clinical research. He has a lot of respect for that process, and told me that even when new drugs go through this incredibly rigorous process of clinical trials and FDA approval, they could still turn out to be dangerous. (Hmmm....like, say, Remicade?) He says that he's not giving this, or any other alternative treatment, a knee jerk negative reaction; he just holds everything--drugs, acupuncture, probiotics, dietary changes, etc.--to the same standard of proof that it works and is safe. He also just can't understand why us "lay people" (I think he means "patients," you know, the people who deal with this crap every single day) are so drawn to "natural" treatments when they can be more harmful than anything put forward by Western medicine.
That was the comment that pushed my buttons the most. I just burst and said, "Look. It's not that I don't respect Western medicine. I've had this disease since 1997 and in that time have tried every single medication my doctors have suggested. But in the last two years, my disease has become less manageable while my options have diminished. I have sat with you in this very exam room every three months begging for ideas of what to try next, and you have nothing to offer. I even advocated for a higher dose of Remicade at more frequent intervals, which you originally balked at. So don't make it sound like I don't want to give what you're peddling a chance. Now I'm at the top end of the dosage for this risky medication that isn't working anymore and you can't understand that I'm looking elsewhere.
"And another thing: don't tell me that just because it has FDA approval and is administered in a nice shiny clinic by well-trained nurses that Remicade is not just as much a roll of the dice as infecting myself with a parasite. In my case, Remicade is a roll of the dice that we know isn't working anymore. Jury's still out on the parasites."
OK, so, my rant wasn't anywhere near that articulate, and there was a little bit of sniveling in there as I tried to get my emotions under control, but I think he was pretty clear on where I stood.
So where do we go from here? Well, as I was leaving, I didn't say that I was LEAVING, but I am seriously thinking about pulling up stakes and moving on. In the meantime, he is consulting colleagues with experience in infectious diseases to see what other systemic dangers I am exposing myself to. I offered (twice) to connect him with the web resources I have been using to gather my info about this treatment, just so he can see where I am coming from, but he's not interested in my internet hoo-ha (my words, not his.)
Problem about moving on is it's not easy to find someone who is a good fit. I want a good GI who is up to date on all the Western medicine stuff, and who will work with me as I go through this other treatment and whatever else might come down the pike. They don't have to be all for it, but it would be nice if they were at least a little bit curious and hopeful about the potential outcome rather than focusing solely on what can go wrong.
Through my work with CCFA, I'm lucky to have met a lot of really great local GI's and I've talked "offline" to a handful of them about this treatment, if only in very hypothetical terms. I did find one who seemed very intrigued, but unfortunately, his practice is about 75 miles from my home, so that doesn't seem very practical. Because this treatment doesn't have the blessing of the medical establishment, it's hard to know what a doc might really think about it until you get behind closed doors with them. One guy I know, a fellow "helminther," suggested that those who find a "worm-friendly" GI mark their doorways with an X or something so the rest of us will know who's OK. Kind of an "underground railroad" for helminthic therapy.
Since it's not really practical to go looking around doctors' doorways for X's either, I will probably start making some appointments to interview prospective docs in the next few weeks. And though I really want to find a good GI, I will probably expand my search to include a few naturopaths or other practitioners who might be more open to looking at the whole picture. (My mother, the RN, is probably spinning in her grave at the very idea.) We also have a center for integrative medicine here in town--maybe I'll give them a call and make an appointment.
But I do know for sure that life is too short for me to spend any more time with someone who's not behind me and my quest to feel better. Breaking up may be hard to do, but it's not as hard as beating your head against the wall.
One more note just for my friends and family: So many of you are so super-supportive, it gives me the strength to know I deserve better from my medical team, that is, the people who are actually getting paid to care about how I feel. But once in a while, you will use words like "inspirational" and "brave" to describe my fight, which makes me uncomfortable. To just let you know how inaccurate that description feels, this encounter with my doctor left me in tears not once, not twice, but three times. Once, in my car driving away from the office. Twice, recounting the highlights of the appointment to my dad. And thrice (Conan O'Brien would be so proud), explaining to John why I'm so frustrated. What would be brave, to me, would be to get over it and move on. To grab hold of this opportunity I'm giving myself to feel better, no if's and's or but's, and don't let anyone get in my way. But that's not what's happening. Until it does, I guess I'll just keep on keepin' on.
Part of me thought that even though he can't really get behind this, he should at least be intrigued by the possibilities, and since I had already done the deed, he'd be interested to see what happens. But he really wasn't. His immediate reaction was to ask about all my meds and current symptoms, becoming concerned when I told him I've had an uptick in my symptoms and actually increased my prednisone. His thought is that because I am so immuno-compromised through my meds, the introduction of the parasite is going to render me completely unable to fend off even the most minor of infections. (To which I say, how come I haven't had so much as a sniffle while John has been fending off one lousy cold after another this winter? Why aren't all the scrapes and scratches I keep getting from trying to keep Scooby the cat entertained turning into raging, pus-y infections?)
Anyway, I told him that first and foremost, I wanted him to know that if he is uncomfortable continuing as my doctor, that's fine, and he should just tell me and I'll move on. He said no, he's not going to toss me out, but now that I've "gone and done this to myself," his main job is to protect me and look out for potential problems. Meanwhile I'm thinking, "What about the potential remission? What about the potential upside?" But he just doesn't see it.
Through the course of conversation, I realized that even if I have a miraculous recovery, he will not believe it's due to the parasites. "It's a totally uncontrolled experiment," he says. "Maybe you would have just gotten better on your own anyway." Now, I ask you, my friends, how likely is it that I would have a spontaneous remission on the exact same medical regimen I have been on for more than a year? I just felt like this is crazy talk. I don't think you have to be a "man of science" to see that just doesn't make any sense.
But I get where he's coming from. This is a guy with a background in clinical research. He has a lot of respect for that process, and told me that even when new drugs go through this incredibly rigorous process of clinical trials and FDA approval, they could still turn out to be dangerous. (Hmmm....like, say, Remicade?) He says that he's not giving this, or any other alternative treatment, a knee jerk negative reaction; he just holds everything--drugs, acupuncture, probiotics, dietary changes, etc.--to the same standard of proof that it works and is safe. He also just can't understand why us "lay people" (I think he means "patients," you know, the people who deal with this crap every single day) are so drawn to "natural" treatments when they can be more harmful than anything put forward by Western medicine.
That was the comment that pushed my buttons the most. I just burst and said, "Look. It's not that I don't respect Western medicine. I've had this disease since 1997 and in that time have tried every single medication my doctors have suggested. But in the last two years, my disease has become less manageable while my options have diminished. I have sat with you in this very exam room every three months begging for ideas of what to try next, and you have nothing to offer. I even advocated for a higher dose of Remicade at more frequent intervals, which you originally balked at. So don't make it sound like I don't want to give what you're peddling a chance. Now I'm at the top end of the dosage for this risky medication that isn't working anymore and you can't understand that I'm looking elsewhere.
"And another thing: don't tell me that just because it has FDA approval and is administered in a nice shiny clinic by well-trained nurses that Remicade is not just as much a roll of the dice as infecting myself with a parasite. In my case, Remicade is a roll of the dice that we know isn't working anymore. Jury's still out on the parasites."
OK, so, my rant wasn't anywhere near that articulate, and there was a little bit of sniveling in there as I tried to get my emotions under control, but I think he was pretty clear on where I stood.
So where do we go from here? Well, as I was leaving, I didn't say that I was LEAVING, but I am seriously thinking about pulling up stakes and moving on. In the meantime, he is consulting colleagues with experience in infectious diseases to see what other systemic dangers I am exposing myself to. I offered (twice) to connect him with the web resources I have been using to gather my info about this treatment, just so he can see where I am coming from, but he's not interested in my internet hoo-ha (my words, not his.)
Problem about moving on is it's not easy to find someone who is a good fit. I want a good GI who is up to date on all the Western medicine stuff, and who will work with me as I go through this other treatment and whatever else might come down the pike. They don't have to be all for it, but it would be nice if they were at least a little bit curious and hopeful about the potential outcome rather than focusing solely on what can go wrong.
Through my work with CCFA, I'm lucky to have met a lot of really great local GI's and I've talked "offline" to a handful of them about this treatment, if only in very hypothetical terms. I did find one who seemed very intrigued, but unfortunately, his practice is about 75 miles from my home, so that doesn't seem very practical. Because this treatment doesn't have the blessing of the medical establishment, it's hard to know what a doc might really think about it until you get behind closed doors with them. One guy I know, a fellow "helminther," suggested that those who find a "worm-friendly" GI mark their doorways with an X or something so the rest of us will know who's OK. Kind of an "underground railroad" for helminthic therapy.
Since it's not really practical to go looking around doctors' doorways for X's either, I will probably start making some appointments to interview prospective docs in the next few weeks. And though I really want to find a good GI, I will probably expand my search to include a few naturopaths or other practitioners who might be more open to looking at the whole picture. (My mother, the RN, is probably spinning in her grave at the very idea.) We also have a center for integrative medicine here in town--maybe I'll give them a call and make an appointment.
But I do know for sure that life is too short for me to spend any more time with someone who's not behind me and my quest to feel better. Breaking up may be hard to do, but it's not as hard as beating your head against the wall.
One more note just for my friends and family: So many of you are so super-supportive, it gives me the strength to know I deserve better from my medical team, that is, the people who are actually getting paid to care about how I feel. But once in a while, you will use words like "inspirational" and "brave" to describe my fight, which makes me uncomfortable. To just let you know how inaccurate that description feels, this encounter with my doctor left me in tears not once, not twice, but three times. Once, in my car driving away from the office. Twice, recounting the highlights of the appointment to my dad. And thrice (Conan O'Brien would be so proud), explaining to John why I'm so frustrated. What would be brave, to me, would be to get over it and move on. To grab hold of this opportunity I'm giving myself to feel better, no if's and's or but's, and don't let anyone get in my way. But that's not what's happening. Until it does, I guess I'll just keep on keepin' on.
Tuesday, January 25, 2011
The State of MY Union
Today, President Obama will make his State of the Union address, and it got me thinking that maybe it's a good day to check in with y'all about the state of MY Union. (For those who don't know, my sometimes nickname for the collective consciousness of me and my wormy little fellas is "the Union." Or "the Legion." Or even "the Army.")
Unlike that other State of the Union, this one will not last days on end, will not be upstaged by the logistics of seating those who disagree with one another side-by-side, and will not once allude to the following terms: "ginned up," "shellacking," or (and this is my favorite) "the American people." There won't even be a rebuttal statement, official or otherwise, from a perceived rising star among my adversaries.
So settle in...here's the latest.
Things are going not as well as I'd hoped, but certainly not as badly as I feared. It's been about 2 and a half weeks since I ingested my 1,250 whipworm ova, and ever since, I've felt my symptoms just a little more keenly than before. That means I'm a little slower to get going in the mornings, my b.m.'s are a little more loose than I'd like, I'm visiting the loo a bit more frequently, and that darned "barbed wire" feeling in my gut is a tad more persistent. I've had two "urgency emergencies" since I became the Union, neither time a major accident, but anytime you poop in your pants while you're out in public, even just a little bit, it's worth noting. My appetite has been up and down, with yesterday ending particularly sadly--all I could stomach was some plain white rice. Boo-hoo.
BUT...none of that's so bad, really, if you think about the horror stories I've heard from some people about contracting this parasite. Unrelenting diarrhea, fever, cramps, etc. Of course, others report either no symptoms at all or just a few days of them. So the short answer is, I'm okay--not as bad as some, not as good as others. Which is just like the course of my disease in general: I don't have it as bad as many, but I'm a little worse off than some.
So again, the key is that we all just keep in mind that I'm on a journey here. What happens today is not so important on its own; what matters is the role of today's symptoms in a bigger picture, a long-term trend, and a future remission. So it's okay if I don't feel so great today or even tomorrow, but do I feel a little bit better the next day? Am I noticing an upward trend compared to last week? The Union is young, my friends, and there will be trials and tribulations along the way to us becoming a humming, helminthic machine. So stay tuned.
Other recent observations and realizations:
Cheers!!
Unlike that other State of the Union, this one will not last days on end, will not be upstaged by the logistics of seating those who disagree with one another side-by-side, and will not once allude to the following terms: "ginned up," "shellacking," or (and this is my favorite) "the American people." There won't even be a rebuttal statement, official or otherwise, from a perceived rising star among my adversaries.
So settle in...here's the latest.
Things are going not as well as I'd hoped, but certainly not as badly as I feared. It's been about 2 and a half weeks since I ingested my 1,250 whipworm ova, and ever since, I've felt my symptoms just a little more keenly than before. That means I'm a little slower to get going in the mornings, my b.m.'s are a little more loose than I'd like, I'm visiting the loo a bit more frequently, and that darned "barbed wire" feeling in my gut is a tad more persistent. I've had two "urgency emergencies" since I became the Union, neither time a major accident, but anytime you poop in your pants while you're out in public, even just a little bit, it's worth noting. My appetite has been up and down, with yesterday ending particularly sadly--all I could stomach was some plain white rice. Boo-hoo.
BUT...none of that's so bad, really, if you think about the horror stories I've heard from some people about contracting this parasite. Unrelenting diarrhea, fever, cramps, etc. Of course, others report either no symptoms at all or just a few days of them. So the short answer is, I'm okay--not as bad as some, not as good as others. Which is just like the course of my disease in general: I don't have it as bad as many, but I'm a little worse off than some.
So again, the key is that we all just keep in mind that I'm on a journey here. What happens today is not so important on its own; what matters is the role of today's symptoms in a bigger picture, a long-term trend, and a future remission. So it's okay if I don't feel so great today or even tomorrow, but do I feel a little bit better the next day? Am I noticing an upward trend compared to last week? The Union is young, my friends, and there will be trials and tribulations along the way to us becoming a humming, helminthic machine. So stay tuned.
Other recent observations and realizations:
- Got a bill the other day for my latest Remicade infusion. Hold onto your seat...My share of the bill is $1,250. To which I say: F**K! (er, I mean "Rats!") Another reminder of just how badly I want to end my relationship with this drug.
- Re-filling my pill tray last week--you know, the kind that older folks use to keep track of their gazillion meds and what time of day they're supposed to take them--I realized that even if/when I drop my UC meds like prednisone and azathioprine, I will still probably be taking a fair number of pills every day to deal with the long-term effects of my disease and those nasty medications. Calcium, iron, B-complex vitamins, vitamin D, etc. and so forth. That's kind of a bummer.
- John asked me last night if I felt like the last few months that I haven't been working have helped me deal with my disease and I have to say ABSOLUTELY. I was so stressed out, I was definitely headed for a health crisis. Now the trick is to get another job before that lack of employment becomes the stressor that causes a health crisis. I'm in the "sweet spot" right now where finding work would be a great thing, but it's not immediately dire. (However, see above about my continuing medical bills! "Immediately dire" may be just around the corner!)
- Another thing about the work situation: as I think about what to be when I grow up, I've had some serious consideration that maybe I physically cannot handle the kind of job/s I'd like to have. A lot of the stuff I've either done or have been interested in are high stress, high burn-out positions, and having a disease that is greatly effected by stress may limit my options if I'm really committed to this remission thing. It's a bitter pill to swallow, that despite what my mom always told me, maybe I can't do anything I set my mind to.
- Good news: I am consistently able to exercise a fair amount without upsetting the Union too much. I'm walking the dog, logging a few miles on the treadmill, and learning to twist myself into pretzel shapes in yoga class, all without having to make a break for the restroom (usually.)
Cheers!!
Thursday, January 13, 2011
Whipworms on Dr. Oz!
My friends the whipworms are continuing their march (or would that be their "wiggle?") into mainstream society, this time on daytime t.v. No, they didn't go toe-to-toe with the ladies on The View, Matt Lauer didn't do an expose on the Today Show....Dr. Oz featured them on a segment called, "So Crazy it Works!" Check it out here: http://www.doctoroz.com/videos/weird-health-remedies-pt-1
This is a good chance to see just how big they are, and even what they look like inside your colon. You'll notice that everyone in the audience is totally grossed out by these images, but I tell you what, the inside of my colon, as seen in my last colonoscopy, looks way worse than that! Plus, people who poop in their pants on a regular basis are not so easily disgusted by something like a little worm.
Go whipworms, go!
This is a good chance to see just how big they are, and even what they look like inside your colon. You'll notice that everyone in the audience is totally grossed out by these images, but I tell you what, the inside of my colon, as seen in my last colonoscopy, looks way worse than that! Plus, people who poop in their pants on a regular basis are not so easily disgusted by something like a little worm.
Go whipworms, go!
Now What? Waiting, That's What!
Greetings, intrepid readers. I am back in town, having had an uneventful whirlwind trip across the pond to meet my helminthic destiny. Everything went smoothly: No travel snafus, not a single emergency sprint to the toilet, and yes, I ingested 1,250 whipworm ova.
It was fairly anti-climatic, really. The little fellas come in a vial of maybe 2 tsp. of liquid, and it's as clear as clear can be. No sign of the eggs. No smell, nothin'. I gulped them down so fast I actually found myself sucking on the vial, feeling like surely there must have been more to it. But no, the whole thing was over in a few seconds.
So how do I feel now? Well, not great, truthfully. I've spent more time in the bathroom the last few days. Today already it's been about 8 times, and it's only mid-afternoon. A few more trips than usual, passing some darn near totally liquid diarrhea. A little bit of gas. Mild cramping. Could this be a sign of the whipworms getting settled? I don't know. I don't think about that so much as I wonder how many of those 1,250 ova I am losing every time I poop! Truth is, I don't feel any worse than I did before I took the worms, just a little bit different.
Now that I've got these little gems in my system, the hardest part begins: waiting. Some people have expected that I would come home from this trip and know right away whether this is working or not. Truth is, helminthic therapy is not so much a destination as a journey. I expect that as the worms reach maturity, I will start to feel a little bit stronger. It probably won't be any kind of earth-shattering experience, just a general upward slope until one day, maybe this summer, I'll realize that HEY! It's been a while since I've had to jump out of bed first thing in the morning and sprint to the bathroom. Or, WAIT A MINUTE...did you notice that I ate Mexican food two days in a row? HOLD ON...when was the last time I had a fever? Or spent a day in bed? Or had that barbed wire feeling in my gut?
Of course, waiting is not my specialty. I was not present the day they handed out patience. I took one look at the line and decided I couldn't wait that long. So it's not like I'm just going to forget I have this going on and will blithely go about my business. Instead, I have to harness that expectation, that impatience, which I plan to do by, well, by planning (which is, incidentally, one of my specialties.) I will start by making a plan for stepping down on my meds, starting with the extra prednisone I started taking before my trip, then getting rid of my regular dose of prednisone, then the Remicade infusions, the azathioprine, and finally the Asacol. And then I will establish a set of milestones for checking in with myself at various intervals to see how I'm doing. At one month, how many b.m.'s am I having? What are they like? How urgent, how much gas, etc.? At two months, how long since I've had any aches and pains, fevers, etc.? At three months, how is my UC affecting my quality of life, my ability to exercise, eat, etc.? When's the last time I had to make use of my emergency undies kit I always carry in my purse? Have I had to cancel any social invites lately?
In six months, if all these things are going well, I will be able to say, YAY! Looks like I've achieved remission! And if not, I hope that at least a few of these things are looking better than they are today. Say, for example, the idea of going to the dentist doesn't strike fear in my heart because what if I have to stop in the middle of a teeth-cleaning to leap up and run to the restroom?
A note to all my well-wishers.....I am so pleased by each and every note of support, and even more by the amazing outpouring of HUMOR you all have brought to the proceedings. Thanks for making me giggle with images of you eating a hearty breakfast of gummy worms in solidarity on the day of my ingestion, thanks for musing aloud about what I might say to the customs agents, thanks for all the Devo "whip it...whip it good!" jokes, the insistence that we have a welcome home party for my new friends, and on and on. The most enduring joke has been John's insistence that I now refer to myself in some sort of menacing third person plural, such as "The Army," or possibly, "The Union." For example, "The Army would like another cup of coffee." Or "The Union is going to read for a while before bed." If I didn't have any power complexes before, I surely will develop one now.
But back to the point at hand, I do honestly feel that everyone's health is affected by positive relationships and "vibes" (for lack of a better term), and so I'm really grateful for all the good energy that comes from knowing people care about me and are not afraid to show it! So thanks, one and all!
It was fairly anti-climatic, really. The little fellas come in a vial of maybe 2 tsp. of liquid, and it's as clear as clear can be. No sign of the eggs. No smell, nothin'. I gulped them down so fast I actually found myself sucking on the vial, feeling like surely there must have been more to it. But no, the whole thing was over in a few seconds.
So how do I feel now? Well, not great, truthfully. I've spent more time in the bathroom the last few days. Today already it's been about 8 times, and it's only mid-afternoon. A few more trips than usual, passing some darn near totally liquid diarrhea. A little bit of gas. Mild cramping. Could this be a sign of the whipworms getting settled? I don't know. I don't think about that so much as I wonder how many of those 1,250 ova I am losing every time I poop! Truth is, I don't feel any worse than I did before I took the worms, just a little bit different.
Now that I've got these little gems in my system, the hardest part begins: waiting. Some people have expected that I would come home from this trip and know right away whether this is working or not. Truth is, helminthic therapy is not so much a destination as a journey. I expect that as the worms reach maturity, I will start to feel a little bit stronger. It probably won't be any kind of earth-shattering experience, just a general upward slope until one day, maybe this summer, I'll realize that HEY! It's been a while since I've had to jump out of bed first thing in the morning and sprint to the bathroom. Or, WAIT A MINUTE...did you notice that I ate Mexican food two days in a row? HOLD ON...when was the last time I had a fever? Or spent a day in bed? Or had that barbed wire feeling in my gut?
Of course, waiting is not my specialty. I was not present the day they handed out patience. I took one look at the line and decided I couldn't wait that long. So it's not like I'm just going to forget I have this going on and will blithely go about my business. Instead, I have to harness that expectation, that impatience, which I plan to do by, well, by planning (which is, incidentally, one of my specialties.) I will start by making a plan for stepping down on my meds, starting with the extra prednisone I started taking before my trip, then getting rid of my regular dose of prednisone, then the Remicade infusions, the azathioprine, and finally the Asacol. And then I will establish a set of milestones for checking in with myself at various intervals to see how I'm doing. At one month, how many b.m.'s am I having? What are they like? How urgent, how much gas, etc.? At two months, how long since I've had any aches and pains, fevers, etc.? At three months, how is my UC affecting my quality of life, my ability to exercise, eat, etc.? When's the last time I had to make use of my emergency undies kit I always carry in my purse? Have I had to cancel any social invites lately?
In six months, if all these things are going well, I will be able to say, YAY! Looks like I've achieved remission! And if not, I hope that at least a few of these things are looking better than they are today. Say, for example, the idea of going to the dentist doesn't strike fear in my heart because what if I have to stop in the middle of a teeth-cleaning to leap up and run to the restroom?
A note to all my well-wishers.....I am so pleased by each and every note of support, and even more by the amazing outpouring of HUMOR you all have brought to the proceedings. Thanks for making me giggle with images of you eating a hearty breakfast of gummy worms in solidarity on the day of my ingestion, thanks for musing aloud about what I might say to the customs agents, thanks for all the Devo "whip it...whip it good!" jokes, the insistence that we have a welcome home party for my new friends, and on and on. The most enduring joke has been John's insistence that I now refer to myself in some sort of menacing third person plural, such as "The Army," or possibly, "The Union." For example, "The Army would like another cup of coffee." Or "The Union is going to read for a while before bed." If I didn't have any power complexes before, I surely will develop one now.
But back to the point at hand, I do honestly feel that everyone's health is affected by positive relationships and "vibes" (for lack of a better term), and so I'm really grateful for all the good energy that comes from knowing people care about me and are not afraid to show it! So thanks, one and all!
Tuesday, January 4, 2011
Final preparations
We're in the last 48 hours before I leave town to pick up my new friends, the helminths. Lots of little last minute stuff going on here, like assembling a wardrobe completely comprised of wool and down (it's been awfully cold in Europe this winter), making my transportation arrangements, getting my dog and cat sitting settled, etc.
These are the kinds of things we all do before a trip, but I'm also doing some preparing for the health journey I'm going on. I'm spending a lot of time (too much time, really) thinking about how I feel about this big leap I'm about to take. Funny how I've been planning for this for almost 9 months now, but I still wonder, is this the right thing for me? Don't worry: the answer is definitely "YES!" It's just that I am such an indecisive little ninny that I question EVERY decision right down to what cheese to put on my cheeseburger.
Which brings up another area of preparation: diet. Since travel is so difficult on my system, I try to watch my diet for at least a few days before I go to give myself the best possible chance to do well while on the road. So I had some "farewell french fries" on Sunday, but now it's all about easy to digest grains, fish, and fruits. Plus coffee. You know I'm not going to give up my coffee, no matter how bad it gets!
Another strategy to help me cope with the stress of travel is to try to get some extra sleep in these days before take off. So I'm trying to get to bed earlier and am squeezing out as many extra minutes before I hop out of bed in the morning as possible. (But if you follow my Facebook page, you know I was posting around 11:00 last night! At least I was doing it from bed....)
The last preparation is in terms of medications. I have a stash of enemas, which are a liquid form of a pill that I take 3 times a day. The enema works as a topical application of the same med, and is typically taken at bedtime so you can (hopefully) retain it for a full 8 hours. I was planning on doing one of these each night of the last week before I go, but honestly, I just couldn't face it. Of all the treatments I've been on, mesalamine enemas suck the most.
So instead I am adding a foam enema in the a.m. and a suppository in the evenings--much easier treatments to swallow, as it were. Yesterday I had my latest Remicade infusion, so I'm good to go there. And starting a few days ago, I doubled my dose of prednisone from 5mg to 10mg. For those who know the evil that is prednisone, that may not sound like such an astounding dose, but I am so freakin' sensitive to the stuff that it is rocking my world: my appetite is way up and I'm not sleeping as well. Soon, I know my face will start to balloon out, and I will get even a little more testy than usual. So this coping mechanism is at odds with my "eat better and get more sleep" strategies, but this one is important because it might help stave off any possible reactions when we introduce those cute little worms later this week.
The last preparation is responding to all the nice thoughts and kind wishes of those wishing me well on my journey. I've been hearing from everyone: family who have been with me from day one, friends from high school, college, and beyond, other "helmith-ers,"co-workers, former co-workers, and even co-workers of former co-workers! All have shared with me their assurances that they are behind me 100%. So if the power of positive thinking has anything to do with the success of this treatment (and I'm certain it does) then I am well prepared to take this on.
So think of me when you wake up Saturday morning--that's about when I suspect the deed will be done! And then be prepared to keep standing by me, because remember, this is a JOURNEY I'm on, not a destination.
Thanks, all!
P.S. I added a link to a really good website under For More Information, to the right of this page. If you're looking for an intro to helminthic therapy, please check it out!
These are the kinds of things we all do before a trip, but I'm also doing some preparing for the health journey I'm going on. I'm spending a lot of time (too much time, really) thinking about how I feel about this big leap I'm about to take. Funny how I've been planning for this for almost 9 months now, but I still wonder, is this the right thing for me? Don't worry: the answer is definitely "YES!" It's just that I am such an indecisive little ninny that I question EVERY decision right down to what cheese to put on my cheeseburger.
Which brings up another area of preparation: diet. Since travel is so difficult on my system, I try to watch my diet for at least a few days before I go to give myself the best possible chance to do well while on the road. So I had some "farewell french fries" on Sunday, but now it's all about easy to digest grains, fish, and fruits. Plus coffee. You know I'm not going to give up my coffee, no matter how bad it gets!
Another strategy to help me cope with the stress of travel is to try to get some extra sleep in these days before take off. So I'm trying to get to bed earlier and am squeezing out as many extra minutes before I hop out of bed in the morning as possible. (But if you follow my Facebook page, you know I was posting around 11:00 last night! At least I was doing it from bed....)
The last preparation is in terms of medications. I have a stash of enemas, which are a liquid form of a pill that I take 3 times a day. The enema works as a topical application of the same med, and is typically taken at bedtime so you can (hopefully) retain it for a full 8 hours. I was planning on doing one of these each night of the last week before I go, but honestly, I just couldn't face it. Of all the treatments I've been on, mesalamine enemas suck the most.
So instead I am adding a foam enema in the a.m. and a suppository in the evenings--much easier treatments to swallow, as it were. Yesterday I had my latest Remicade infusion, so I'm good to go there. And starting a few days ago, I doubled my dose of prednisone from 5mg to 10mg. For those who know the evil that is prednisone, that may not sound like such an astounding dose, but I am so freakin' sensitive to the stuff that it is rocking my world: my appetite is way up and I'm not sleeping as well. Soon, I know my face will start to balloon out, and I will get even a little more testy than usual. So this coping mechanism is at odds with my "eat better and get more sleep" strategies, but this one is important because it might help stave off any possible reactions when we introduce those cute little worms later this week.
The last preparation is responding to all the nice thoughts and kind wishes of those wishing me well on my journey. I've been hearing from everyone: family who have been with me from day one, friends from high school, college, and beyond, other "helmith-ers,"co-workers, former co-workers, and even co-workers of former co-workers! All have shared with me their assurances that they are behind me 100%. So if the power of positive thinking has anything to do with the success of this treatment (and I'm certain it does) then I am well prepared to take this on.
So think of me when you wake up Saturday morning--that's about when I suspect the deed will be done! And then be prepared to keep standing by me, because remember, this is a JOURNEY I'm on, not a destination.
Thanks, all!
P.S. I added a link to a really good website under For More Information, to the right of this page. If you're looking for an intro to helminthic therapy, please check it out!
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