Humpty Dumpty had IBD,
Humpty Dumpty said, “Shit! Why me?”
Humpty took drugs, said, “Man, this sucks!”
and opted to get sur-ge-ry.

Hi, all! It’s me again, back with an update. The past four months have been one fun test after another. The first was my ass-reaming (pouch scope) in January to determine what was causing my tummy problems (sick at my stomach, incomplete emptying, etc. after stopping the Xifaxan I’d been on for 2 plus years). The pouch looked good, so the next test ordered was a barium small bowel study. This required me to do something I hadn’t done in years-Drink glasses of thick, nasty barium while sporting a stylish hospital gown (one in front, one in back) and roll around on an x-ray table for about 3 or 4 hours while the doc took picture of my insides. The study was reviewed and revealed a narrowing of my intestines next to the J-pouch connection site. Afraid my stricture was back, I was referred to a surgeon who reviewed the films, scoped me in his office and found no stricture, but some weird, “white stuff” in my pouch. (Not barium though, he hypothesized.)
This is a photo of some barium I was recently downing. I find the pretty pink straw makes it seem more like a pina coloda. 
Test 3: CT scan requiring even MORE barium
and IV dye injection. This revealed no sinus cavity as suspected because of the “white stuff” (great news!) but indicated that I have one whopper of a J-pouch. (Insert my-j-pouch-is-hung-like-a-horse joke here). Evidently when I had my horrible first stricture that I didn’t notice after my takedown 4 years ago (how am I supposed to know what a J-pouch poo ‘should’ be like?) it caused my pouch to stretch to accommodate my accumulating poo. Evidently pouches can “retract” but mine liked being the big pouch on the block, so it just stayed large and in charge.
Test 4: Defecating video pouch-o-gram. Translation: This time I don’t drink the barium, it’s enema-ed up my ass, I’m given IV dye (again) for contrast, and I roll around on a table for 2 hours while they video me crappin’ it out. This should tell my surgeon if my big-daddy pouch is not emptying properly because of its size and causing constant bouts of pouchitis. This would explain why I felt fine when I was always on antibiotics. – The antibiotics were treating my pouchitis caused from incomplete emptying.
This brings up several new questions…
- How do I feel about pooping on tape? I don’t feel embarrassed anymore. I’m a little worried I might be radioactive from all the barium I’ve ingested (in one orifice or another) in the past few months, not to mention the contrast dye. I’m also concerned about what options this leaves me. Reconstructive pouch surgery to “shrink” my pouch, doesn’t sound like a lot of fun, and I’m not sure they’d even suggest it after all the problems I’ve had and the Crohn’s diagnosis. (Crohn’s+surgery=bad.) If an ileostomy is suggested (it’s been mentioned more times to me in the last few months than I care to recall), I think I will ask to begin popping perma-antibiotics again.
- Do I care that it’s probably not that “good” for my body to take 6 antibiotic pills a day? Not really. At this point, I call it a wash. I can’t think that Humira is that great for me, or any of the other drugs I’ve slammed myself with in the past decade to control this disease. Our options suck. All options for sick people suck unless that option is a cure for their disease. At this point in my life, I’m over being bitter about my lack of appealing options and the side effects of our medications. I now just look for the options that will allow me the best quality of life NOW. I try to not worry too much about the long-term or possible super-scary side-effects because I can’t imagine any of them are any worse than anything I’ve already endured. Humira, for instance, MIGHT give me cancer and won’t cure my disease, but it makes it manageable so I take it (twice as much as the ‘normal’ dose.) The cancer thing scared me at first, so much so that I put off trying Humira until I was skeletal thin, unable to eat, malnourished, and absolutely exhausted. I realized that whatever Humira “might” do to me, couldn’t be too much worse than what Crohn’s was doing to me now. I just wanted to feel better, I was desperate, out of options, so I took it. It helped. The suppositories I shove up my ass every morning and night don’t excite or stimulate me, but they make my quality of life better overall, so up they go! It’s the same with the antibiotics-if they can help me keep my J-pouch longer, feel better, and not have to deal with an ileostomy, or at least put if off a few years longer, that seems like a more appealing option to me.
- Do I worry about what all of this “might” do to me in the next ten years? Kind of, but not terribly. I try to live in the moment and get the most out of life now. Of course this is not to say I have a fatalistic view. If I find out there’s some great danger with living with the big pouch or reinstating long-term antibiotics, I’ll reconsider. Plainly, I’d rather pop pills than be cut open and put back together again. Enough with the Humpty Dumpty shit.
So I guess this thread has a few themes I’d like you to chime in on.
How do you feel about your medical options as an IBD patient, or as a patient in general? Do side-effects scare the bejesus out of you, or are you just thankful to have an option?
How do you feel about all of the invasive, embarrassing tests we get as IBD patients? Do you, like me, just not care anymore? Is your modesty all but turned to dust?
How do you feel about being young person with an ileostomy or a j-pouch? How do you feel about having had multiple surgeries before your 30th birthday?
How do you feel about how the diseases affected your family and your achievements in life? Have they limited you, caused riffs in your family life, or have they inspired you to fight more and achieve more successes?
Lots to think about. Lay it on me.
I’m off to go poop in a cup and let someone examine it. Just joking
