Hey all,

So yesterday I had my pouchoscopy to make sure everything is healed so I can get my second (takedown) surgery done. I’m 8 weeks post op from my first surgery. I did the scope without sedation and it wasn’t too bad. I’m a little frustrated though. Doctor said the pouch was a “little more inflamed than she would like to see at this point”. I have UC. Had it for 18 years. Pathology says UC when they removed my colon. Doc took some biopsies to check if any of this inflammation could be Crohns or if it’s just diversion colitis. Did any of you experience this? I’m not having any problems. I feel good after healing up these past 8 weeks. My pouch is all healed. No leaks and whatnot. Just some inflammation. What do u guys think? I know I need to wait for pathology results but it’s frustrating. If it’s not Crohns then I get my surgery in 1.5 weeks!!! But if it’s Crohns she said we will have to figure out meds and surgery postponed for maybe 3 additional months (Definitely frustrated about that). 

 

 

 

Original Post

I have had a Pouch with Crohn’s Disease for a long time and in my opinion the pathology report should not necessarily be effecting surgical planning. First of all I have had numerous diagnostic tests and most of them are inconclusive with any reasonable degree of medical certainty and therefore highly unreliable. What is concerning them is the fact that they are seeing inflammation in your Pouch and what that might represent. It isn’t necessarily Crohn’s or diversionary colitis (unless it’s just in the rectal cuff, then the latter diagnosis may apply). Where is the inflammation? It could be ordinary Pouchitis, which might be treatable with a short course of antibiotics and not a valid reason to change surgical planning. In any event after full disclosure it should be your decision anyway. But these pathology reports are notoriously unreliable especially if all they did was a Prometheus blood test.

If it’s inconclusive or pouchitis, a decision to delay but not cancel surgery while it is treated is reasonable.

CTBarrister posted:

I have had a Pouch with Crohn’s Disease for a long time and in my opinion the pathology report should not necessarily be effecting surgical planning. First of all I have had numerous diagnostic tests and most of them are inconclusive with any reasonable degree of medical certainty and therefore highly unreliable. What is concerning them is the fact that they are seeing inflammation in your Pouch and what that might represent. It isn’t necessarily Crohn’s or diversionary colitis (unless it’s just in the rectal cuff, then the latter diagnosis may apply). Where is the inflammation? It could be ordinary Pouchitis, which might be treatable with a short course of antibiotics and not a valid reason to change surgical planning. In any event after full disclosure it should be your decision anyway. But these pathology reports are notoriously unreliable especially if all they did was a Prometheus blood test.

If it’s inconclusive or pouchitis, a decision to delay but not cancel surgery while it is treated is reasonable.

Thanks for your reply. I agree, the pathology reports are not a guarantee of anything. The path on my colon after it was out came back UC. I’ve had the blood test years ago and that came back UC. I’ve had no definite signs of Crohns in 18 years...always looked/acted like colitis BUT I know how that goes... I feel that unless u have obvious signs of Crohns, then anyone with “uc” could end up actually having Crohns. The only issue they found during my first surgery was some mild creeping fat in the end of my small intestine. She said that is seen in Crohns but has also been seen in UC. So idk what to think? But it’s whatever, what’s done is done...I’ve had the surgery and will be continuing on with my jpouch and do whatever I need to do, whether I need meds for Crohns or antibiotics for Pouchitis or maybe all it is, is diversion colitis. The surgeon didn’t see any obvious Crohns signs during my pouchoscopy. She just took the biopsies in a few areas. Oh yea, I don’t know for sure where all the inflammation was...I don’t think it was only in the rectal cuff. So anyways, that’s where I’m at. If the path says Crohns then I have to get on some kind of meds and surgery is delayed. If path says no Crohns, then surgery is scheduled for here soon. Ughh!!! Confusing....

Just take it 1 step at a time. I ended up with Ctohn’s In Pouch and in neoterminal ileum years after J Pouch surgery but it’s been very treatable. I have had my Pouch 27 years and most of those years have been taking meds that control the inflammation. My quality of life is very good. IMHO where the inflammation is located and it’s pattern is important. The pattern I developed is quite common which is rectal cuff (mild), J Pouch inlet and neoterminal ileum. That pattern is common because there is no backsplash valve on a J Pouch as there is in the colon and  that area is where it manifests over time. Stool backwash is the cause.

CTBarrister posted:

Just take it 1 step at a time. I ended up with Ctohn’s In Pouch and in neoterminal ileum years after J Pouch surgery but it’s been very treatable. I have had my Pouch 27 years and most of those years have been taking meds that control the inflammation. My quality of life is very good. IMHO where the inflammation is located and it’s pattern is important. The pattern I developed is quite common which is rectal cuff (mild), J Pouch inlet and neoterminal ileum. That pattern is common because there is no backsplash valve on a J Pouch as there is in the colon and  that area is where it manifests over time. Stool backwash is the cause.

That’s very reassuring to know that you’ve had quality life with Crohns and a jpouch. Hope it’s the same for me if I end up having Crohns. Man, I wish I knew where the inflammation was. She didn’t really say. I had no sedation during the scope but I could barely pay attention bc all I could think about was the gas discomfort and wondering when it would be over lol

The doc has you on the right path. If it’s diversion pouchitis then the best treatment is takedown. If it seems to be IBD-caused inflammation, then getting that controlled with medication before takedown will give you a better result. The biopsies aren’t perfect at telling these two different conditions apart, but they give you better information than you would have otherwise.

I had a fair risk of Crohn’s before surgery, and it’s never been ruled out. Pouch failure is more common in Crohn’s than UC, but I’ve been pleased with my J-pouch for about 17 years.

Wanted to leave an update! Got a call today from my surgeon. She said the biopsies came back ok. Only showed mild inflammation. Nothing concerning was seen and nothing that appeared to be Crohns. Most likely diversion Pouchitis. So we are moving forward with takedown in one week! 

I have not heard of biopsies being able to determine the existence of Crohn’s or not, but in any event the actual diagnosis at this stage less important than knowing the extent of it. Inflammation can be labeled but regardless of labels, it must be treated. In this case, the treatment is takedown.

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