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I had 2 small ulcers at top of pouch at the inlet. I had these exact same ulcers at same spot 2 years ago with my Dr Shen scope. Surgeons nurse, who used to be Remzi's nurse stated, "pouch ulcers and pouchitis are different. ulcer looks like a little sore, where pouchitis is usually diffuse inflammation varying in severity. " should this be concerning? why do I have these ulcers for 2 years? hasn't spread or gotten worse and not causing me issues??

he did look at that area that gets that bad burning pain just inside and he stated nothing was there that he could see, so chalking it up to nerve issues.

Original Post

That area is the hardest in every patient. I have had consistent inflammation at the J Pouch inlet and above the inlet for many many years and it's due to backsplash stool. I think it's a problematic area for many long term J Pouchers.

As to the differentiation between pouchitis sores and more diffuse inflammation, the concern is that all of it needs to be treated and the question is whether your treatment is optimal or whether there is room for improvement. I have had inflammation in the same area and ulcerations even since starting Remicade in 2015, even though the rest of the pouch was cleared up. My GI advised it's a tough area due to backsplash stool and it may be as good as we will get it. His only concern is that the area is also strictured in my case, which he says will only be an issue if he can't get a scope through the inlet area. If he can't then he may dilate. That's his test.

Last edited by CTBarrister

I don't think inflammation should be ignored because it's not symptomatic. Both Dr. Shen and his protege Dr. Oikonnomiu (my former GI who, like Shen with you, fled for the greener pastures of NYC) firmly believed in that philosophy. Other GI Docs seem to think "pouch cancers are so rare, no point in treating it if he isn't having any issues." Dr. Shen and Dr. O, on the other hand, while understanding pouch cancers are rare from their own jointly conducted study at Cleveland Clinic, believed that untreated inflammation gets worse and can become a problem. If yours isn't getting noticeably worse and you aren't having symptoms probably it's not a concern, but changes in the appearance of ulcerations is something that would concern me as well.

Last edited by CTBarrister

I too have pouch ulcers. Many..right now I have 5. Different locations & size. Dr S hen always treated me with kindness & respect.  He did a procedure a few yrs ago by injections of sugar water  into ulcers. Crazy sounding but they were bleeding ulcers & that stopped the bleeding but didn't stop them from existing. Dr Philpott who i now see at ccf says that is to be expected the pouch is compromised with infection & inflammation.  Waiting now for entyvio infusions to be approved for every 4 weeks instead of 8. ( been on for over a yr now) not sure what yo do to get our pouches healthy! Some day I pray that the docs will find a cure. Right now I'm in so much pain.  Right side hurts so bad & rectal pain is unbearable.  Just finished 2 courses of flagyl. No relief. After 31 yrs. Perhaps time to think about surgery 

 

@CTBarrister posted:

I don't think inflammation should be ignored because it's not symptomatic. Both Dr. Shen and his protege Dr. Oikonnomiu (my former GI who, like Shen with you, fled for the greener pastures of NYC) firmly believed in that philosophy. Other GI Docs seem to think "pouch cancers are so rare, no point in treating it if he isn't having any issues." Dr. Shen and Dr. O, on the other hand, while understanding pouch cancers are rare from their own jointly conducted study at Cleveland Clinic, believed that untreated inflammation gets worse and can become a problem. If yours isn't getting noticeably worse and you aren't having symptoms probably it's not a concern, but changes in the appearance of ulcerations is something that would concern me as well.

I was told on this scope that they were 2 tiny ulcers and that's how Shen explained them to me 2 years ago at my last scope. no symptoms. My biopsies were fine as well I just found out today. Not sure if they biopsied the ulcers themselves  or not but Dr Dietz said everything looked good and see you in a year

I too have pouch ulcers. Many..right now I have 5. Different locations & size. Dr S hen always treated me with kindness & respect.  He did a procedure a few yrs ago by injections of sugar water  into ulcers. Crazy sounding but they were bleeding ulcers & that stopped the bleeding but didn't stop them from existing. Dr Philpott who i now see at ccf says that is to be expected the pouch is compromised with infection & inflammation.  Waiting now for entyvio infusions to be approved for every 4 weeks instead of 8. ( been on for over a yr now) not sure what yo do to get our pouches healthy! Some day I pray that the docs will find a cure. Right now I'm in so much pain.  Right side hurts so bad & rectal pain is unbearable.  Just finished 2 courses of flagyl. No relief. After 31 yrs. Perhaps time to think about surgery 

 

2 years ago I had mass bleeding. Shen stated the bleeding was from the suture line midpouch. He stated there is lack of blood flow there normally and ulcers are common in that area, why mine bled he is not sure but he also used clips and injected (sucrose)or sugar, and plugged me up with a tampon for rest of day and that did the trick

I too have pouch ulcers. Many..right now I have 5. Different locations & size. Dr S hen always treated me with kindness & respect.  He did a procedure a few yrs ago by injections of sugar water  into ulcers. Crazy sounding but they were bleeding ulcers & that stopped the bleeding but didn't stop them from existing. Dr Philpott who i now see at ccf says that is to be expected the pouch is compromised with infection & inflammation.  Waiting now for entyvio infusions to be approved for every 4 weeks instead of 8. ( been on for over a yr now) not sure what yo do to get our pouches healthy! Some day I pray that the docs will find a cure. Right now I'm in so much pain.  Right side hurts so bad & rectal pain is unbearable.  Just finished 2 courses of flagyl. No relief. After 31 yrs. Perhaps time to think about surgery 

 

if that is to be expected then why are you on biologics? I also have Dr Philpott as well when Shen left, I like her but not comfortable with her yet and Dr Remzi told me to see Dr Dietz at University who he trained.

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