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.