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.

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.

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?