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I have had some unusual events happen over the past year and I was hoping I could get some guidance from someone who may have experienced the same.

Long story short, I hade my takedown 3 years ago (right before covid).  My first scope since takedown happened last month after begging my doctor to take a look because I have been going to the bathroom more often than I felt was normal (10 times a day, 4-5 overnight).  I also requested antibiotics - thanks to this group for the information! I know - I need a new doctor - I am working on that.

Antibiotics worked like a charm, but then once I came off them symptoms were back such as urgency and frequency and gas.   However, in the findings of my scope, my doctor said I did not have pouchitis but moderate to severe cuffitis.  The confusing part is why would antibiotics work on cuffitis?  I had no idea I had inflammation in my rectum until he told me from the scope as my symptoms with UC are not present now - thank god.  So he prescribed me mesalamine both oral and rectal.  The rectal made me incontinent and oral makes me bleed, so I stopped taking them and decided to change my diet and eliminate dairy and tighten up the reigns on gluten.  I tried all the holistic diets with UC and they never worked, however this time my symptoms are soooo much better.  Barely any urgency, and I am sleeping so much better at night.  When I do seem to eat dairy, my rectum hurts. 

So - the question is do I nix the drugs and just try diet?  My doctor is concerned of not getting the inflammation under control, however if we never did the scope we never would have known it was there.  I also believe the inflammation never went away since takedown because I almost always used to flare in my rectum, and there was inflammation there during takedown.    Does any one have any insight on this situation or have dealt with this before?   

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I had high grade dysplasia in my rectum and therefore I needed to have a two step procedure. GI told me that if I did not CRC was next.

Not surprisingly, Cuffitis was next and pretty quickly since the cuff is the 2cm remnant of the rectum.

I’ve been told that unchecked inflammation will eventually lead to dysplasia. Since I am adamant about no further surgeries, I take the canasa suppositories daily to keep the inflammation in check.

If Canasa did not work it would be biologics as I intend to treat aggressively as needed.  Do not let inflammation fester; I did during my UC days and I paid the price.

I do not know why suppositories don’t work for you. I insert one in the morning, since my pouch is empty at that point and my first BM is not until the PM, so I get 4-5 hours of medicine directly on the ATZ. It works because my cal protectin score is now normal.

Those suppositories didn't help me either. But that's individual, you need to try.

If you feel your diet has a positive effect you should stick to it and try something different now and then to confirm it is still necessary.

Budesonide should also be effective against inflammation in the pouch / cuff area, it is a locally acting cortisone. I've been taking it for more than 10 years now for chronic pouchitis, starting with the usual dose of 9 mg a day and reducing step by step to a low dose of 1.5 mg during the last years.

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