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!
Saturday, July 23, 2011
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.
Subscribe to:
Posts (Atom)