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!