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Have any of you gotten ulcers in your J pouch?

Never
Yes, but I know what caused them i.e. medication, stress, etc.
Yes, but I am not sure what caused them
Posted by Kris10 ·

Comments (11)

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I too have fought ulcers every since I got my pouch, it has been 15 years now and I can really relate to Karen's comments wondering why did I even get my colon removed. I have  tried nearly all of the drugs as well just started something brand-new and am on my third round of Entyvio . This is a drug that is infused have not seen any results yet. Very curious about the Tysabri if the current drug does not work I am possibly looking at removal of the pouch at my wits end. I two left my original provider mayo clinic and have been a patient with Dr. Shen for  five years now and will be seeing him in a couple weeks. Definitely going to mention that Tysabri !
Just had a scoping a week ago after having some blood in my stool that required a brief hospital stay and some blood, metronidazole and levquin cleared it up but the scoping did show two small ulcers, GI Doctor wasn't sure the cause but took some samples and should hear from her really soon.

I have had ischemic ulcers in my j-pouch for several years.  They are caused by poor blood flow, probably from when the j-pouch was created almost 19 years ago (1-step surgery).  I have tried antibiotics, Humira, cortisone, and, most recently, hyperbaric oxygen therapy, all with no relief.  Next step is lysis of adhesions (surgery) to hopefully restore blood flow.  I don't have pain from them, just annoying urgency sometimes.

Originally Posted by Karen Read:
I had chronic ulceration in jpouch that caused a lot of pain.  severe pain. I was fearful I'd need a permanent colostomy.  My Drs changed my diagnosis from UC to Crohn's.  I'm now on Tysabri and everything has cleared and I feel better than I have in many years.
After reading other comments- I also had inflammation from a staple and an abscess that needed to be drained MANY times.  But it IS frustrating to have a colectomy to treat IBD/UC and then STILL get ulcers.  It's as if the inflammation just moves to the lowest part of the bowel - whether it's the original colon or the jpouch.  My ulcers made me wonder why I had the surgery in the first place.  I left the #1 hospital in the world - Mass General - to be treated by Dr Bo Shen at the Cleveland Clinic.  He is a miracle worker and will never give up on the patient or force them into surgery they are not ready for.

 I also see Dr. Shen at Cleveland.  He is one of the top pouch guys in the world and is great.  He is conservative about his treatments and only recommends surgery as last resort.

 

I have had bleeding ulcers in my pouch which the consultant found when he put the camera in. He said it was the pouch showing signs of colitis. He explained that as the pouch learns to act like your colon it can also get ulcerated as well so I now take cyprofloxacin every day which keeps things fairly settled
I had chronic ulceration in jpouch that caused a lot of pain.  severe pain. I was fearful I'd need a permanent colostomy.  My Drs changed my diagnosis from UC to Crohn's.  I'm now on Tysabri and everything has cleared and I feel better than I have in many years.
After reading other comments- I also had inflammation from a staple and an abscess that needed to be drained MANY times.  But it IS frustrating to have a colectomy to treat IBD/UC and then STILL get ulcers.  It's as if the inflammation just moves to the lowest part of the bowel - whether it's the original colon or the jpouch.  My ulcers made me wonder why I had the surgery in the first place.  I left the #1 hospital in the world - Mass General - to be treated by Dr Bo Shen at the Cleveland Clinic.  He is a miracle worker and will never give up on the patient or force them into surgery they are not ready for.
I had chronic ulceration in jpouch that caused a lot of pain.  severe pain. I was fearful I'd need a permanent colostomy.  My Drs changed my diagnosis from UC to Crohn's.  I'm now on Tysabri and everything has cleared and I feel better than I have in many years.

I just checked your profile and you haven't had a pouch for very long. When I had mine done, they used staples to hold everything together and after a few years, the staples started to come out. The body obviously saw these as an irritant/foreign body and expelled them. (Similar thing happened when I had wisdom teeth removed and the broken bits of bone from the roots slowly made their way to the surface.)

Is it possible that this is occurring inside your pouch?

You say you are taking medication and I am presuming orally. Have you considered flushing the pouch with warm salty water twice daily to 'clean' the internal surface?

 

Alternatively, although cortisone is not a long term option, an enema of a cortisone product or other type of inflammatory may also be of some assistance to the healing process.

I know because of an extensive and thorough search during my pouchoscopy and then biopsy tests that were done after. I know they are ulcers and am on medication to try and heal them; I'm just not sure why they developed in the first place. 

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