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Does anyone else have a K with Crohn’s ? I was just discharged from the hospital for the second time in 2 years - for a blockage. I was warned when I fist got my K that it might not work for me because I have Crohn’s. I’m starting to think that it’s time to let my K go. I’m tired of random emergency hospital stays, surgeries, and trips to Cleveland.

Anyone else have Crohn’s ?

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I had a diagnosis of crohn's disease when I got my k-pouch as well.  I too suffered from many blockages in the beginning.  It felt like I was in the ER at least once a year with partial obstruction.  Basically just figured out that I just can't eat like I used to, even when I had an ileostomy, doesn't seem to matter how much I chew it's never enough.   Some people who have k-pouches can eat pretty much whatever they want, I am not one of them. The list of things I don't eat (fruits and veg) is pretty long but I haven't been to the ER in over 3 years now and I'm feeling pretty proud of that accomplishment

Try high protein, low fiber.   I only eat 1-2 servings of fruits OR vegetables a day and they are small servings.  I rarely eat popcorn.  I love having my k-pouch and I DON'T want to go back to an ileostomy so I just deal with the dietary restrictions. 



I was diagnosed with ulcerative colitis in 1967 and recieved a curative Brooke ileostomy in 1970. I then recieved a k pouch in 1979. I did well until I had a slipped valve. Dr Deitz at university hospital performed a k pouch revision in 8/18/22.When I woke up after surgery he told me I had Krohn disease based on his operative evaluation. A biopsy confirmed Krohns disease. Fortunately I have no symptoms consistent with Krohns disease. Good luck to all of you. Sincerely,Robert L. Boyer M.D.

I agree that Dr Dietz is amazing. He created my K and has been helping me try to hold on to it. I’m seeing him next week to review my options. I love him and his team. However, I am getting tired of having to halt my life and run to Cleveland for emergency issues with this pouch. I love my K when it works. But the unpredictable issues that land me in the hospital every 18-24 months are causing major anxiety. Im wondering if I need to just give up and get a more stable Brooke that my medical team at home can help me manage.

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