About to get jpouch surgeries but might have Crohns

Hi everyone,
So after 15 years I decided I'd had enough, tried everything, and scheduled my first of two surgeries to eventually get the jpouch. The surgeon wanted to do a mri of my small intestine to make sure everything looked okay...results showed : they don't know if I have ileitis or Crohns and they found a polyp that may or may not be cancerous.... Doesn't sound good, right?! I thought I was a great candidate for this surgery, always been diagnosed with colitis...now doesn't sound so promising...anyone have any experience with this? Thanks
Amy

Go for a 3-step instead of a 2-step, they can then biopsy your colon more accurately and you can make your decision to continue with a Jpouch after the results have come back.

Sometimes UC symptoms will backwash into the last part of the small intestine but it's still UC.

I have chronic pouchitis, my GI says it might be crohns. I take antibiotics daily and i don't notice it, it's much easier than living with UC. I only wish that I had surgery sooner.

I know that it throws a monkey wrench in your plans.

If they aren't 100% sure if you have CD or UC then from my understanding they would not do j-pouch surgery, only if they're 100% sure the patient has UC will they do the j-pouch for the obvious reason that j-pouch isn't very successful for CDers since all involved with a j-pouch makes CDers not a good candidate for it. At least that's how it's viewed where I live.

I think people place too much faith in these surgeons. Just because they want to go ahead with the surgery doesn't mean they are correct about the diagnosis. All you have to do is check the medical reporting database for malpractice and adverse reactions to see that doctors make mistakes all the time.

If there's any doubt about your diagnosis you should get a second opinion. Just because the first of the three step surgery is reversible doesn't mean it's not having an impact on your health. Those GI surgeries are major surgery that alter the body. Not trying to sound alarmist, I think whatever you decide will be the right thing. I just wouldn't want to go under the knife if I was concerned about correct diagnosis.

Thank you for all your responses.... Just had another colonoscopy - second this month - thanks to the surgeon ugh.... Showed I have colitis of course which I knew but that also inflamed in the ileum and I'll find out in a couple days pathology, hopeful know more about if Crohns or not..... But even if it's not Crohns, wouldn't the jpouch not be the best solution b/c they use the ileum to create jpouch and mine is sick?? Or would they just cut that out too? I am definitely not jumping on surgery without understanding everything, I am concerned that the surgery wouldn't have good results with these complications and then there is no turning back, yea know?

If I can't have surgery, I'm not sure what I'll do, I haven't tried entvyio yet and that's it, I've tried all other drugs....actually, what is Simponi? Never heard of it.....

Inflammation of the terminal ileum occurs in something like 10% of cases of ulcerative pancolitis -- the ileocecal valve is compromised allowing "backwash" into the ileum that leads to inflammation. I had it too. It's been studied and ileitis (in the absence of other signs of Crohn's) has no association with poor j-pouch outcomes.

Hey, just wanted to sympathize with you shmoopy. I've had UC (or what I think is UC) for over 15 years. My surgery is scheduled for September 4. Just went to see my surgeon yesterday and they have switched me to a 3 step surgery because yet again I have an anal abscess. I have had 3 and as you may know, abscesses are common in Crohns patients not so much in UC. I've had 6 colonoscopies (latest was last November) and the pathology ALWAYS comes back as UC. Still, my surgeon wants to get a full pathology report on my colon once removed before he creates a pouch. I went for a MRI enterography today so my surgeon can check out my small intestine before surgery. I am anxious for the results. It really sucks when we make the hard decision to have surgery and then a diagnosis change looms before us.

Hi Amy!
My surgeon let me know that they really can't be 100% sure which one it is until they open you up, which is kind of scary. But I had a test done before my surgery that I forget the name of right know. But it was basically where I swallowed a capsule with a camera and had to wear a belt all day. The camera took pictures of my insides and the belt somehow was the receiver. It lets them see basically all of your insides and more than a colonoscopy shows, so it was kind of the most sure fire way that they could see if really had UC. Everything on that test showed it was UC and when I had my surgeries my surgeon said there was nothing to suggest I had crohns, but that was after he already opened me up. I would maybe ask your GI or surgeon about trying that. I had my last step in February and am loving my jpouch! Off all meds and only go to the bathroom about 6-8 times a day with no urgency! Good luck to you and don't hesitate to ask any questions!(: