Friday, June 1, 2012

Second Verse, Same as the First

When last we met, intrepid reader, we discussed the surprise of discovering at my colonoscopy that I have whipworm buddies in my colon (more specifically, in my cecum.)  Funny thing: after all the rigamarole of the last few weeks, of changing doctors, having a colonoscopy, finding out I have worms, and on and on, we seem to be right back where we started.

As soon as I was over the fog of the drugs from my procedure, I contacted my pals at AIT, where I got my worms, to see if they could help me sort out a few things.  First, why would I test negative for whipworm in December, then have a positive ID now?  Second, they sure aren't doing me any good right now, but can I expect that they still might work?  And finally, is there any reason to believe they are doing me any harm?

I had a very enlightening conference call with two new staffers at AIT, who answered my questions thusly:

  • My stool test in December was most likely a false negative.  Apparently, whipworm is so uncommon, they just don't know what they are looking for.  
  • My worms are settled in my cecum, which is far, far away from the site of my inflammation.  Two problems with that: 1. The worms only dampen the immune response at the site of inflammation, and don't like to go to sites where the inflammation is that freakin' bad. 2. They don't generally like to get so close to the rectum even under the best of circumstances, for fear of getting flushed out of their host altogether.
  • No, this dose probably won't become therapeutic for me.  If I should want to try the worms ONE MORE TIME, the suggested protocol would be for me to kill off this population, go on a nice heavy dose of prednisone to dampen the rectal inflammation, then repopulate while I am still on the prednisone to give the worms a leg up (or a tail up?) on getting established where they can do some good.  So, in other words, get well first, then ingest more worms.  What's the point of THAT?
  • Good news, though: the worms are very unlikely to be doing me any harm.  I have a fairly small population (around 20), so they are just minding their own business there in the healthy part of my colon.
I have some issues with this information and how it seems to suggest that I never stood a chance of this therapy working, since we knew from the get-go where my disease is active and the state of the inflammation.  But let's set that aside and move on to where we go from here.

I had a follow up with Dr. P., the new GI doc yesterday.  We spent the first 5 minutes going round and round about the worms, but this time, instead of having my doctor yelling at me for giving myself a parasite, she was frustrated because the lab where she sent samples for ID claims they found no evidence of worms.  She's like, "But I sent you actual worms.  What do you mean there's no evidence of worms?"  They had no answer, of course.  She had other questions too, mostly the same kind everyone asks like, what's it like to swallow worms?  Did you feel anything?  Do they reproduce in your body? What other diseases can they treat?  The only thing she didn't have to ask is, "What do they look like?" because, well, she's seen them up close and personal.

I told her about my phone call with AIT and my decision to not take the worm-killing antibiotics she prescribed in favor of just letting it ride, since I worked so freakin' hard to get this parasite in the first place.  She was cool with that (YAY!) and just asked if there was any reason to think the worms might migrate, or in some way affect other systems and cause me trouble.  I assured her that was not a concern, but I would keep the prescription she wrote me and plan to use it at the first sign those worms are becoming foe, not friend.  

The other thing she learned from the pathologist at the lab is that the samples of my colon tissue that she sent over look more consistent with a Crohn's disease diagnosis, not UC.  That basically means the inflammation goes deeper than just the innermost layer of my colon.  Doesn't change things in the short term; just means I may be in for a different journey as this disease progresses.

Next, we turned our attention to what she can do to help me get my disease under control, and we had a few options:
  1. Increase my dose of Azathioprine.  My blood tests are showing that this drug is not at a therapeutic level in my bloodstream, but on the downside, I have a history of doing some harm to my liver when I've taken higher doses.
  2. Increase my dose of Remicade.  I could potentially double this dose, but I don't know.  My gut is just telling me I've built up a resistance to this treatment and it's not going to do much good.
  3. Try a big bad course of prednisone to get things under control.  (Yeah.  Hell no.)
The thing about all of these options is they are systemic, meaning they affect all sorts of systems in my body, all for the hope of calming 8 inches of inflamed rectum.  Seems a shame to jack up all sorts of things rather than just treat the affected area, right?  So.  That brings us back to my favorite of therapies, the suppository and the enema.  Which is what my last doctor had me on, if you remember.  This time, though, I have to admit that it makes a lot of sense.  And I'm newly motivated to make a go of this, given what I saw on that colonoscopy.  

So here we go again.  Right back where we started.  I'm going to try a 6-week course of these topical treatments, and then I'll check in with Dr. P. again. Based on my progress, we may do a procedure called a flex sig, which is a colonoscopy that only goes as far as the first big bend in your colon.  She says there's no reason to go any further since we know the rest of my colon is healthy.  And besides, she says, "I don't want to see those worms again.  Ewwww."  

And with that comment, I knew for sure: I like her. A lot.  And that is a big and important difference, as we embark on the very same treatment plan I was on before.

Wednesday, May 23, 2012

Just Another Routine Colonoscopy--or is It?

Greetings, friends.  It's been interesting times here in UC-Land the last few months, the climax of which was a BIG surprise at my colonoscopy yesterday.  Let me bring you up to date...

Symptomatically, it's been a real bummer the last few months.  I usually describe my condition as "up and down" but lately it's been a lot more "down" than "up."  I've pretty much given up on the suppositories and the foam enemas.  My poor little rectum was just so inflamed that it was really difficult and uncomfortable to put something up there, let alone retain it for more than a few minutes.  Plus, (surprise, surprise) my insurance company did not want to pay for the ginormous dose that my doc was recommending.  So I just kinda gave up the fight and stopped taking them.  (I'm well aware that just stopping this treatment is not a rational response, but sometimes having a chronic disease means burying your head in the sand, so there.)

Meanwhile, my change in diet wasn't doing much to make me feel better.  As you may recall, in January, I started a vegan diet plan (the 21-Day Kickstart) that focuses on plant-based foods, including lots of whole grains and legumes.  I did this not to help with my UC, but to positively affect my overall health.  And in that regard, it worked.  I had better energy, mental clarity, and was walking around with that general well-being you get after you pass up the burger in favor of the really healthy salad.

However, my tummy didn't like it so much, and I surmised the fiber content of the food was to blame.  So I ratcheted that back a little by cutting back on beans, whole wheat, brown rice, raw veggies, etc.  It helped a little, and I have since relaxed the rules even further, but still, I have been feeling just totally debilitated by abdominal pain, gas, diarrhea, urgency, and so on and so forth.

So it seemed like time to go to the doctor.  But, as I've documented here before, I'm not totally in love with my GI guy.  I knew if I went there, we'd just be sitting in the exam room, with him telling me I have to stick with the suppositories and enemas and that's that.  I wasn't sure there's another answer out there, but I just had to find out, so I reached out to another doc, who had been recommended to me by folks I knew from my time at CCFA.

Next thing you know, I'm sitting in Dr. #2's office while she reviews a write up I prepared about my disease, my meds, and procedures.  I kept it pretty brief: no mention of my past forays with therapies such as probiotics, liquid diets, acupuncture, herbs, or helminths.  She asked a few probing questions, but kept coming back to the same question I've been asking myself: how is it that I am on so many medications and still not doing very well?  I gotta tell ya, it is so validating to have a doctor respond that way.  What a relief!

From this exchange, I can tell Doctor #2 is curious, and very deliberate.  She has a couple of ideas of things we can try, but first, she wanted to run a couple of blood tests and do a colonoscopy to see what's what in there.  Besides, she says, at my age, with 15 years since initial diagnosis, I should probably be getting these procedures annually, and my last one was almost exactly a year ago.

Now, I've said it before, and I'll say it again: a colonoscopy is really not that big a deal, but still, it takes a lot of time and energy (and heavy duty laxatives) to prepare for the procedure, you can pretty much count on being down and out for the day of the colonoscopy, and now, today, the day after, I am still pretty mentally foggy.  So not the greatest experience, but we do what we gotta do.

Usually, I try to stay as awake and alert as possible for these events, so I can watch and ask questions as the scope makes its way up the colon.  But this time, I gave myself over to the drugs and just let it happen.  So it wasn't until I was in the recovery room that I learned about the big surprise during the procedure.  One of the nurses mentioned that they found PARASITES in my colon!  I came out of my fog for just a moment and said, "Worms?  They saw worms?" And she said yes, and then I drifted back out.  You may recall that back in December, I tested negative for parasites, and this was long after we should have seen evidence of these little guys.  I fully believed this therapy had failed, for the second time.

So, given my drugged up state, I thought maybe I just dreamed that interaction with the nurse, but a little bit later, she mentioned it again and told me that they had removed worms and sent them to the lab for ID.  That's when I had to come clean and tell them they were whipworms and I had given them to myself deliberately.  For those who are already on this therapy, you know that this is a tricky conversation to have under the best of circumstances, but imagine what it's like to try to explain this treatment to medical professionals (who generally are not the most receptive audience) while you are totally doped up.

When I finally got to see the doc before I left the clinic, I apologized profusely for not telling her sooner about this, but explained that I had no reason to believe they were in there, so I thought it was a moot point that I had tried this therapy.  She said she had never heard of it, and asked me to explain how it's supposed to work (again, not easy, given my mental capacity.)  I fumbled through that and then offered to send her some more info about the treatment via email so she could get a better picture.  I ended by saying I hoped this wouldn't affect her treatment plan for me, and she said she didn't see why it would, but she handed me a prescription for an antibiotic that will kill off the little fellas.  

So that was an exciting turn of events, but more to the point, what the colonoscopy showed is that my rectum is ANGRY.  It looks really red and inflamed, lots of ulceration.  The procedure report shows photos, and it's the worst I've seen it, ever.  The rest of my colon looks good, which is good news.  But Doctor #2 (who is likely to become my #1) still wants to know: how come I'm on so many meds and seeing no relief?  It's a difficult question.  We've definitely got our work cut out for us.

But it feels different now, because it's the UNION that has its work cut out for us, not just little ol' me.  So weird to wake up this morning and know that.

Thursday, February 9, 2012

Catching Up!

I am always amazed at myself when I take a months-long break from updating this blog.  After all, it's not that nothing's going on in the life of my diseased colon.  Usually, it's that I am frickin' sick and tired of paying attention to it, so I sort of bury my head in the sand and don't write about it.  But the truth is, that doesn't really make it go away.  In fact, I started this blog as a way to journal about my ups and downs in the hope that by giving a time and a place to my stupid disease, maybe the rest of my life wouldn't be so overwhelmed by it.  So, now that we're in a New Year, I think it's time to get back to that coping strategy.

Let's get started by doing a little catching up on the last few months:
--I took a short-term job in August that lasted through mid-November.  It was a great test-run for my work-readiness, and especially for my ability to deal with the stress.  I'm pleased to report it went pretty well.  I had my good days and bad, to be sure, but I was mostly able to keep my UC from impacting my work.  It took lots of planning, patience, and flexibility, but I definitely count that experience as a "win."

--In December, John brought home another insurance bomb from his employer.  They announced, a week before Christmas, that on January 1 they would be going to another insurer.  We had until the end of January to choose among, like, 15 different plans, and if we incurred any expenses between January 1 and when we made our choice, we would be reimbursed.  Which, I think, was probably a pretty good deal for most people, but what about me, who had a Remicade infusion scheduled for the first week of January?  The retail cost of this fun little treatment is over $5,000--who among us is prepared to just put that on the ol' credit card and trust you'll be reimbursed?  I will spare you all the ugly details of trying to figure this out, but trust me, they are indeed pretty ugly.  The upshot is I stayed on track with my treatments, and I currently have a charge for over $3,600 on my credit card and am awaiting reimbursement, which will hopefully come before my payment is due in a few weeks.  Fingers crossed!

--Lest anyone think I harbor ill will toward John's employer over any of my insurance problems, I want to make clear that my beef is with the entire concept of tying health care to our employers.  This approach adds way too many layers of administration and paperwork, and its basic assumption is that health care is not a right we should all enjoy, it is a "perk" that employers can offer their employees, like free parking or working from home.  If you don't think that's ridiculous, let's just look at how the Catholic Church thinks it should be able to deny its women employees access to birth control medication, despite the laws of the land that clearly state otherwise.  Why should any employer have a say in such a choice?  But I digress....

--Meanwhile, I was realizing it was definitely time to check on those little wigglers in my belly and see what's going on in there.  I had an inkling that this extended experiment was not working out, but the only way to know for sure was to hand over some poop to a lab and let them see if there was any evidence of the little fellas in there.  I finally did this at the end of December, and (drum roll, please) discovered that round two of the whipworms failed.  (Wah-wah.)

I have such mixed feelings about all of this, but truly, my biggest disappointment is in my "provider," AIT.  My suspicion is that the worms they gave me were never viable in the first place--emphasis here is on "suspicion."  I haven't felt like taking that line of questioning up with them, but when I discovered that the worms didn't survive, I emailed just to let them know.  I was very clear that I just wanted to inform them of this outcome and that I thought they would like to know this as part of their record-keeping on their success rate.  I asked them to respond to my note and let me know if they would like me to send a stool sample to them directly for testing, or if they wanted to ask me any other questions about my experience.  I didn't hear a word.  So, although I know lots of people have had a great experience with Jasper and Marc at AIT, I have to say that I have not been so pleased.  I would just encourage anyone who is considering this treatment to do a lot of research, and make sure they are confident in their provider before they pull the trigger.  I don't regret my choices, not in the least.  But, should I go down this road again, things will definitely be different. 

--My GI doc is getting sick and tired of me.  Last time I saw him, he was not particularly happy that I weaned myself off my prednisone.  He definitely didn't support my desire to drop the Remicade infusions, or even to space them out more.  And he's a little frustrated with the fact that I'm having trouble sticking to the dosing schedule of 2 suppositories and 1 foam enema/day that he is recommending.  To that last item, I just have to say, it may seem like a fairly small thing to give yourself these treatments, especially if they might help you feel better.  But it only seems like no big deal to people who haven't tried sticking medication up their butt three times a day, everyday.  All while knowing you may need to do this forever.  Sigh.

--I felt pretty good through the holidays, and certainly did my part to eat, drink and be merry.  But by the time New Year's Day came around, I just felt....gross.  Lazy.  Doughy.  Generally unhealthy.  So, I decided to join in the 21-Day Kickstart program with the Physicians Council for Responsible Medicine (PCRM).  This is a 21-day diet plan to turn your health around by adopting a plant-based diet.  Good-bye, cookies, tacos, and heaping plates of pasta.  Hello, fruits, veggies, and whole grains.  It took only a few days to get over the ill effects of too much "ho, ho, ho," and despite my worst fears, giving up all animal-based foods was not nearly the sacrifice I thought it would be.  But, I think because this is a very high-fiber way of eating, my digestive tract did not love this plan as much as it could.  I made it through the 21 days by adjusting the fiber intake downward a little, and am still staying pretty true to the plan--probably about halfway between my old dietary habits and the ultra-strict vegan guidelines of the Kickstart.  I plan to write more about this, probably over on the "How I See It" blog, so if you're interested in reading more, click on over there.

--Just to make sure I didn't get too cocky, feelin' all good, eatin' all that fiber, exercisin' like Jane Fonda in the '80s, my tummy has been in an UPROAR this week.  I've had abdominal pain like I can't describe.  Really awful gas.  And urgent, urgent trips to the potty that often leave me stuck in the loo for a long, long time.  No mouth sores, or skin lesions, or fevers--thank Buddha.  But it has not been an auspicious beginning to February.  Yesterday seems to have been the peak; I'm doing much better today, but UGH.  Just a reminder that this disease can be rough goin' sometimes.  (By the way, I had wondered what would become of my vegan ways if and when my next flare came along, and I'll just say that dinner last night was a bowl of chicken noodle soup.  Comfort food still trumps veganism under these circumstances.)

So that's my world in a nutshell for the last several months.  It's really the same old, same old, don't you think?  Insurance quandries, crazy new diets, disagreeing with my doc, and being disappointed by alternative therapies.  All against the backdrop of difficult GI symptoms.  Good lord, the monotony is so B-O-R-I-N-G, isn't it?  Well, I remain ever hopeful that it won't be this way forever.  I'll get back to remission and won't believe my incredible luck at feeling good, eating well, and living a healthy, normal life!  The only question is WHEN?

Friday, August 19, 2011

My Latest UC Pity Party, Explained...

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?)

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.

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!

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:
  • 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. 
Symptoms and Drugs
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.
Hopefully I will have news to report soon about little worms getting settled in my tummy!  In the meantime, I'll keep fighting the good fight, trying not to be too freakin' crazy, staying supportive but not judgmental, and following my own path, not measuring myself against anyone else.  That should be plenty to keep me busy, don't you think??