Okay, seeing as I am the resident Crohn’s+Jpouch expert, I feel required to “chime in” in response to the many-questioned thread in response to Brevin’s very informative (always hilarious) recent post. Many responders seemed concerned about the pre-surgery tests that would rule-out or possibly diagnose Crohn’s disease. The Prometheus Test, being one of interest. The tests for markers for Crohn’s disease (CD) are never 100%. For that matter, NO medical test is ever 100% accurate. I had test after test to be sure I didn’t actually have Crohn’s, both before the surgery and after the step 1 colectomy. The pathology of my colon was “textbook UC” as was my history. Then I had MORE CD tests after I started developing problems like “pouchitis” that wouldn’t clear with antibiotics and strictures that required more surgery to repair. The tests were always negative for CD, which was a huge relief to me, except for the fact that they turned out to not mean much. It wasn’t until they saw that the inflammation/ulcerations were above my Jpouch, still untouched by antibiotics, that they realized it was CD all along.
These diseases are very similar and very complex, and even the experts will admit that they do not know much about them. This is not meant to be scary, just to clarify the great similarity between them and the difficulty in distinguishing Crohn’s from UC sometimes. Whether you have UC or CD ( and this is speaking from my experience only), getting the diseased colon out of you will make you feel SO much better. Surgery is generally avoided in CD b/c it can cause what probably happened to me, which is for the disease to “activate” in areas where it was previously dormant, ie: your small intestine, now Jpouch.
Now, a word of advice: You cannot go into these surgeries totally paranoid about what *might* happen. I never thought I’d end up with CD. The complications and statistics of such were well-explained to me prior to deciding to have the surgery. Crohn’s wasn’t even a blip on my radar screen. My surgeon said, “There’s a 5% chance you could end up having Crohn’s,” and I remember in that moment, brushing it off. And here I am in the 5%, and you know, I’m 100% better than before I had the surgery.
ALSO, just b/c you have a Jpouch and are later diagnosed with CD does NOT mean you will lose your pouch. I’m proof enough of that:) This possibility of pouch loss terrified me because I did not like the ostomy. I banked so much on having the J-pouch and on finally having a semi-normal young life because of it. Maybe eventually I will lose my pouch, maybe someone one without CD will lose theirs for another reason, but is it still worth the risk? For me it was, absolutely. And…so far so good. I’m on my 4th year, and still goin’ strong.
Also a note about Humira. I realize the same drugs don’t work for everyone, but Humira has been a wonder-drug for me, so I don’t want to frighten people away from something that may help them in the future. There are some scary side-effects, it’s true. They do affect some people, but again, for me, it was well worth the risk. It, along with other newer drugs, have had me in the remission I was never in before surgery, and this is why I will probably be able to keep my pouch for many years to come.
Brevin, yes mouth issues are more common with CD. I pretty much always have a canker sore on my throat, and in retrospect, probably had a lot of other CD markers, but these diseases are SO similar, that you really can’t bet your future on your mouth issues. Many docs always attributed my canker sore to UC and never attributed it to CD. So, given MY scenario, if I had Crohn’s all along, (and probably did) and had the Jpouch anyway, I’d say I’m doing pretty darn well for a CD+Jpouch case. It is far from perfect, but I am so much better, mentally and physically, than I was before the surgery, I feel almost like a different person. Mostly, I just feel capable of having and living my life now. So just be of the mindset that IF something goes wrong after your surgeries, that you and your world will not fall apart; rather that you will make informed decisions about how to best deal with it. Living your life with “what ifs” is no way to live, and it is unfortunate that these diseases kind of program us to think that way. Surgery is always scary. It’s a huge life decision, but it’s one of the best I’ve ever made.