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.