I had my pouchoscopy today and there was a stricture at the inlet approx 2cm. It’s persistent I’ve had this for about 9 years. With my old dr he always dilated this during pouchoscopy but this new one says there is too much inflammation and a large ulcer nearby so she did not do that. She wants to start entivio first to reduce inflammation.
Has this happened to anyone ?
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Hi Kate,
I also have a stricture that I’ve been dealing with. I believe a physician dilated it years ago during a pouchoscopy and I started having leakage at night. I had never experienced that before. Now I’m afraid to be dilated again. My new Dr also wants to consider Entyvio.
I’m curious what you decided…
Mrs.P
No to the entivio-I had my old GI dr look at the scans pictures everything - even additional testing -and he said the inflammation is stable. He also said once you start a biologic you never stop it’s like a marriage with no divorce.
I’m doing biofeedback again pelvic floor route and have “rabbit ears” at the top of pouch as shown on scans. (This is the way the stapler was used by the surgeon and that seems to have caused some issues). Not surgical error more instrumentation error.
I have learned a lot more about the physiology of the pouch how it’s structured etc. It’s good to have as much information as possible.
Katenet,
I do not know if you saw my thread on the EBDs I am going through, but I linked it below. Long story short, I am strictured at the J Pouch inlet, have been for 10 years plus. My GI told me years ago, the test is whether he can get a flexible sigmoidoscope through the stricture, or not. If not, I would have to be dilated. This July he could not get it through "easily". I am now on Remicade plus Entocort for the inflammation and having repeat EBDs. The next one is now scheduled October 27. More on this here:
https://www.j-pouch.org/topic/...pic-balloon-dilation
The blockage risk is there if the meds do not work, but I do not try to worry about it too much and just put the confidence in my doctors and my treatment.
So sorry!🙏🤞🥰
Thank you all for your thoughts. I have learned so much from your comments and I realize I still have more to learn! I have an appointment with my GI Dr tomorrow. She’s thinking Budesonide and maybe Entyvio. I’m not crazy about Budesonide since it is a steroid. They tend to make me irritable and give me moon face. I also want to investigate Entyvio before agreeing to that treatment.
I just know that I’m miserable. I’ve struggled with pouchitis over the last 21 years but this go round is much worse. Or maybe I’m just older and not bouncing back as quickly. I think it all results from not being able to completely empty my pouch due to the stricture. Ugh.
Thanks again! I will continue to read all your thoughts and comments.
@Mrs P posted:I’m not crazy about Budesonide since it is a steroid.
Entocort aka Budesonide should not be compared to Prednisone or other steroids. It's a "designer steroid" mostly absorbed in your gut. Only 10% of the dosage is systemically absorbed. "Moon face" comes from Prednisone which is fully systematically absorbed. It's unlikely you will have those kinds of side effects with Budesonide.
Well that is good news!! Me and Prednisone had a long ugly relationship many years ago. I don’t want to go there again. I am going to ask my GI about Cipro. I haven’t tried that for a while. I can’t take Flagyl. Gives me terrible headaches.