@Derrick posted:

My question is could this be Crohn’s disease or something else? Reason I ask is how can the entyvio take care of the cuffitis and not the other inflammation if it was the same thing? Unless one was caused by UC and other chronic pouchitis? Any insight is helpful as I don’t know how one problem was solved but didn’t seem to touch other portions.

You are confusing diagnosis and treatment. One really has nothing to do with the other.

Forget about the labels because they don't matter. Let's call it inflammation.

The inflammation at the inlet and above the pouch is traditionally more resistant to biological drugs than it is within the pouch proper. In my case Remicade completely eliminated my pouch inflammation but did not eliminate the inflammation at the inlet and above the inlet in the ileum. There are anatomical and mechanical reasons why inflammation in this area is more resistant.

The J pouch has no backsplash valve and as a result, stool pools at and above the inlet and above into the neoterminal Ileum. Squeezing the pouch to evacuate stool therefore pushes it in two directions, down, and up. This backsplashing of stool creates an inflammatory pattern that is more difficult to treat. It doesn't mean it's a different type of inflammation. It means it's more resistant to treatment and your ileum may be more reactive to the SIBO that is resulting in that area than others.

In your case it sounds like a change of treatment onto another biologic is warranted. Has Remicade been suggested? If the inflammation is labeled as severe you need to be aggressive in treating it and may want to supplement Remicade with antibiotics.

Don't lose sleep over labeling it because you have what you have and you need to treat it. It's an extremely common post we are seeing with this inflammatory pattern and it's likely due to backsplash stool. How much your stool is backsplashing may be a factor and a Pouch revision is something that can perhaps be discussed with a colorectal surgeon. I would seek a consult in that regard, although I am not suggesting that a J pouch revision will do anything other than possibly reducing the amount of backsplash. The J pouch unlike the colon has no backsplash valve, so you will never eliminate it. You just need to treat how your body is reacting to it.

Remicade was not done yet or anything suggested as I just got the scope yesterday and my follow up isn’t until the 11th. So if entyvio treated one, but not the other, in theory they were separate issues and not all “crohns”? That’s my thinking at least. I’m thinking antibiotics for a long period of time and then probably remicade will be what they go with. I also want to know is this crohns or if I got the pouch surgery reversed, would my problems be solved? If it isn’t crohns, then my problems solved. If it is crohns, it’s not.

If I had both cuffitis as well as pouchitis with inflammation of the pre-pouch ileum I would start with continuous antibiotics for the pouchitis and mesalamine suppositories for the cuffitis. Two treatments for two conditions. If it got to the point of needing a surgical solution I’d attend to the specific diagnosis for a more reliable prognosis and plan, but until then it’s more useful to focus on treatments.

Scott,

The cuffitis is now gone. The Entyvio took care of that but didn’t touch the other two problems. I’m assume two completely different issues require two different treatments but they only did one thinking it would work for all and it didn’t.

I understand. The problem is that the knee-jerk approach would be to replace the Entyvio with a different biologic, in the hope that it would take care of both problems - it’s certainly true that biologics can treat both conditions. I am generally reluctant to abandon an effective treatment, though, so there’s a case to be made for adding a treatment instead of simply substituting a single new one. Have you tried continuous antibiotics in the past?

No I have had 4 or 5 rounds of antibiotics between May 2023 and November 2023 but there were good size gaps in between them all. Nothing ever continuous because my doctor didn’t want to. I had to beg to get antibiotics at all.

@Derrick posted:

If it isn’t crohns, then my problems solved. If it is crohns, it’s not.

I don't think this type of analysis of your issues is either helpful, or accurate. If you have a belief that someone will be able to tell you whether or not you have Crohn's with any degree of certainty whatsoever you are very badly mistaken. All of the diagnostic tools such as the CT and MRI Enterographies, the capsule endoscopy, and the Prometheus test only serve to enrich pathologists with lots of dollars. In exchange you will only get speculative answers- and an empty wallet. Been there and done that, still have no answers. Would you rather be in the dark with $50,000 or still in the dark after spending $50,000?

Your analysis is faulty because a label isn't going to solve your treatment problem. You still have to solve that. And as Scott said that should be your focus. All of the treatments for Crohn's, UC and Pouchitis are virtually the same and there will NEVER be any certainty on your diagnosis for reasons I already mentioned in my first post in this thread. If there was never any inflammation seen in your ileum before you got your J Pouch chances are it is backsplash stool creating your issues and not Crohn's, but worrying about slapping a label onto a condition whose labeling is inherently uncertain strikes me as a really useless waste of your time and energy. Focus on treatment. Remicade and antibiotics might put you in a better place.

Thank you. I had 0 inflammation in my small intestine prior to surgery. Was only in my colon.  I’m thinking I will be on remicade and antibiotics as well.

But: isn’t the Entyvio doing a fine job treating the cuffitis?

It is yes but not touching the pouch or above the pouch which is severe inflammation.

@Derrick posted:

It is yes but not touching the pouch or above the pouch which is severe inflammation.

Yup. Perhaps antibiotics can manage that.

That is what I am hoping. I would have thought if ot all was the same mechanism (type of inflammation) the entyvio would have taken care of all of it and not just cuffitis. So I’m hopeful antibiotics for a prolonged period of time will help with that. It seems to for other people.

Can you be sure it was Entyvio that helped with the pouchitis and not the antibiotics treatments?

Sorry, I meant to say cuffitis instead of pouchitis.

Steve,

No I can’t other than the antibiotics were very sporadic over a 7 month period. I had them 4 times over that time and none were consecutive. So I guess it could have been the antibiotics but the entyvio has been taken consistently.