Crohn's Diagnosis after First Step

I have always been diagnosed with UC. I've had an endoscopy and an MRE which have shown no inflammation above the colon. A few weeks ago, I had Step 1 of 3 for a j pouch. Unfortunately, the biopsy showed Crohn's instead of UC. I met with my surgeon and for now all future surgeries are postponed. He said that all of my inflammation indeed was only in the colon and rectum and my small intestine looked great. He straight up called my colon ugly though and had to do an extra incision to get it out because it was so inflammed. It would have definitely needed to go either way. So, with the biopsy results, there is potential that inflammation could pop up somewhere else. He has done successful j pouches in the past with patients like me that have never had any inflammation outside of the colon, but it would be a higher risk. So, I could either go through with the j pouch at a higher risk or commit to the end ileostomy that I have now.

So far, the ileostomy has been fantastic. All of my symptoms are gone. I have had no leaks or irritation. I only have to change my appliance once a week. I empty my bag 4-5 times a day. It is just so much better than what I have been dealing with for years. I have had trouble sleeping though, but I think my subconscious is just very confused about not having to wake up and rush to the toilet every couple of hours and just keeps waking me up thinking I'm going to have an accident. Hopefully that will get better with time. I guess my only reservations would be about having to carry around extra supplies everywhere, the general annoyance of having something glued to your belly 24/7, and some self-consciousness. I feel like with time I could overcome all of those things though. I'm planning on keeping my ileostomy for some months before making a final decision to see how the negatives would really affect me. I was also hoping to start having children with my husband in the next few years, so that's an important consideration.

This is probably a very personal decision, but I would be interested in what you all would do in my position or if anyone has been in this position before. Do you think a j pouch is worth the extra risk? Anything I'm not considering?

Original Post

Hi, Laur. I’m sorry about your disappointing diagnosis. My circumstances had some parallels with yours, so I’ll share how I thought it through, in case it offers some useful tidbits.

1) My Crohn’s diagnosis was uncertain. Nevertheless, two surgeons turned me down, and the third was convinced that I had UC. The third one was probably basing that on arrogance/optimism, but I was inclined to agree with him. Crohn’s is pretty hard to diagnose with certainty. The definitive finding on biopsy is granulomas, but they are rarely found. Another suggestive finding is “skip lesions,” where the inflammation goes away in part of the gut and reappears in another part. Do you know what the doctor found that caused the diagnosis to change? How certain is your diagnosis? Sometimes a second opinion can help distinguish between what’s known and what’s guessed. In my case we ended up with “Indeterminate IBD,” which is the diagnostic equivalent of a shrug.

2) How comfortable are you with risks? J-pouches have a higher failure rate in Crohn’s, and that’s not as tidy a process as it sounds. It tends to look like months or years of significant discomfort/disability before giving up the J-pouch. In my case I set the bar very low. I hoped to get at least two good years out of my J-pouch. That was about 17 years ago, and I’m still going strong in spite of needing antibiotics every day. So I got very lucky, but plenty of folks don’t. What result would be good enough for you to be glad you chose the J-pouch? How likely is that result?

3) How good is the alternative? This is a very personal decision, and you have much better information than I did. I only had my imaginary notions of an external appliance, whereas you’re able to spend as long as you like getting to know the pros and cons of your ostomy. If you choose the ostomy, are you done with surgeries? Some folks find that closing up the anus (“Barbie butt”) helps prevent some nuisances down there, and others are able to mostly forget about it. You have an established, stable relationship, which is an important part of ostomy decisions for many folks.

4) Remember that you have considerable flexibility. For example, you could choose to defer the decision until after you’ve had whatever babies you’d like to have, which might simplify/avoid some of the pregnancy challenges that are possible with a J-pouch.

There are plenty of other considerations, but hopefully this will provide some assistance. Good luck!

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