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Diffuse Jejunoileitis- Anyone have experience with this?

Hi All. So the type of Crohn's is diffuse jejunoileitis and it has been very hard for my doctors to get it under control which (from everything I've read in medical journals is very common as this is a very uncommon and complicated type of Crohn's). It usually results in surgery at some point but because of the amount of bowel that would need to be removed, short bowel syndrome is a very real concern. As I said in my other post for now we are titrating up my dose of Stelara to every 4 weeks and I just re-did the loading dose. Despite being on oral prednisone, I still don't have an appetite and am living on shakes and other full and clear fluids as the majority of my diet. I know that with this type of Crohn's it is very common for oral prednisone to not be as effective. One thing the GI on call (who was my previous GI) during my hospital stay said in his report was that we may want to consider going back to an anti-tnf instead since it was very effective for my disease (Inflectra in combination with Imuran). My trouble started when my GI took me off combination therapy and I got severe psoriasis. From what I've read azathioprine is often needed in the treatment of diffuse jejunoileitis. My appointment with my GI is on March 16 and I know we have to try this with Stelara first but I'm wondering whether it would be worth it to advocate for adding methotrexate as well. I know our next step if Stelara fails and I have another obstruction will be trying Humira in combination with methotrexate but perhaps I need the methotrexate already? I know the side effects aren't fun to adjust to but I'm just ready to stable and am hoping some of you may have some thoughts, encouragement etc and experience with this type of Crohn's.
 
Hi, I know its been a while but I hope you are well. From what I know, strictureplasty is the procedure that should almost always be done for jejunoileitis. Resection should only be used for fistulas or abscesses. Any good Crohn's doc would know that preservation of the bowel is of the utmost importance, more than anything else, so strictureplasty should almost always be the preferred treatment.
 
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