It's been a while since I have written. My girl is in hospital again. This time for bleeding ulcer in K-pouch. Scared her and us to death. She felt awful for weeks. Dr. scoped pouch and saw ulcers, not pouchitis. Autoimmune, so antibiotics not prescribed. While waiting for biopsy results, intubating led to lots of blood loss. ER, transfusion, scopes and clamping off the ulcer. Still in hospital, working through pain, electrolyte imbalance, weakness....What now? Has anyone had to deal with bleeding ulcers? Any suggestions for diet, course of action? No plan A or B. 
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I am so sorry Art Mom,
No, I have no idea whatsoever what to do...
I had stomach ulcers as a teen (probably due to all of the meds etc) but that resolved itself once I got my pouch...
Not sure what the rules are these days for diet but light, not too much roughage, low residue for easy emptying and intubation and tons of lube.
Good luck for your daughter...I hope that they get to the bottom of this fast and fix her up
Sharon
Originally Posted by Art Mom:
It's been a while since I have written. My girl is in hospital again. This time for bleeding ulcer in K-pouch. Scared her and us to death. She felt awful for weeks. Dr. scoped pouch and saw ulcers, not pouchitis. Autoimmune, so antibiotics not prescribed. While waiting for biopsy results, intubating led to lots of blood loss. ER, transfusion, scopes and clamping off the ulcer. Still in hospital, working through pain, electrolyte imbalance, weakness....What now? Has anyone had to deal with bleeding ulcers? Any suggestions for diet, course of action? No plan A or B.
Hello
Yes I have had years of bleeding following inserting catheter.
I had been found to have ulcers on entrance to K pouch.
I think the holes in side of catheters catch and result in the bleeding.
To bear in mind my surgery was over 40 years ago.
There were no problems found with the reservoir itself.
Many problems, many ideas.
Best wishes Pat
Art Mom, I hope you daughter is much better by now. I am experiencing her symptoms currrently. It is so scary. It's like nobody knows what to do. Were the doctors able to help her?
Thanks!
Hoping
Out of the woods thanks to Dr. Shen-Cleveland Clinic. Doctor's here (MI) diagnosed daughter with "Chrones of the pouch", permanent disease, need for steroids for 8 weeks, antibiotics.
Got in to Cleveland- bless them for seeing us right away. Diagnosis after Dr. Shen's scope...no Chrones, no infection, don't go on steroids. Ulcer due to catheter wear and tear in pouch. Experiment with other catheters, experiment with other lubricants. See him at least once a year!!!
We have yet to hear back from MI docs. Thinking of dropping them all together. The ER doctors saved her with emergency surgery. Her GI doc's only caused panic and didn't know what they were looking at. ARG.
So glad that she is doing better...yes, those catheters can be rough on the stoma-valve...I get regular granulation by the entrance that the cath hooks on and starts bleeding. Sometimes it is droplets and sometimes it is more. I have to use silver nitrate sticks to cauterize them regularly.
Thankfully it is just granulations and Dr C taught me what to do with it. If he hadn't I would be in a constant state of panic.
Keep that little girl of yours safe
Sharon
I haven't been around for a while, but I just read this thread and I wanted to share how I "prep" my catheters: I too was getting the hooking and bleeding as I inserted or removed the catheter.
I took some very fine sand paper like a 600 grit and simply sanded the edge of each of the catheter holes to remove that sharp edge and leave the edge with a radius. It takes a lot of sanding with a fine grit but you want a smooth finish that you can't get with a course paper. For me this greatly reduced the frequency of bleeding.
I don't know why the catheter manufacturers don't do this?!?!
I hope this helps.
I wonder if you could get the same result with a Dremel tool? My husband thinks you can do anything with a Dremel tool!
Jan 
Jan, I have also used a Dremel tool to do the job. I used a conical shaped bit to bevel the edges. Running it at a higher speed seemed to leave a smoother finish, but you have to hold the catheter pretty securely and watch your fingers. You can also go back after and smooth out the edges with sandpaper. Something like this bit or smaller will work:
There are smaller tools (almost identical) for pedicures that work just as well...and they are a bit less dangerous and easier to handle. They don't run on as high a speed but at least they won't sand your fingers off.
S
Hi Art Mom,
My name is Avery and I am 22yrs old and have had a BCIR for almost a year.
I stumbled led upon your post as it seems I've been experiencing similar issues as your daughter. Just wanted to drop in and see how she's doing? Feel free to PM me. Would be glad to discuss some things I've tried etc.
Avery, I hope you are doing well and have a knowledgeable doctor you can go to when needed. This last hospital stay illuminated our need to stay in touch with Cleveland rather than trust the experience of our team here in Michigan. Daughter has not been in hospital since, though she has times of feeling quite poorly. She does not review these forum or use site. I wish she would. She is finishing her BA degree this term and she doesn't like to dwell on her health. She is planning on moving to LA this summer. I am equally anxious and excited for her.
I am glad to know you have BCIR as I feel j-pouch was just a temporary fix on way to where we are now. I also resent that my girl was cut open for those three operations when in hind site, it all ends here anyway. (At least for her and the severity of her infection.) If you can get to any of the great health centers to review your status and speak to truly life saving GI and Colo-rectal teams they can set you on a secure path. I wish you well!!!
Hi Art Mom!
I'm just now seeing your reply above and was blown away by how many things your daughter and I have in common.
I saw you had mentioned your daughter is planning to move to LA. I actually live in LA myself and just recently made the move out here last year. Has she made the move yet?
How is she doing? I actually use to be seen by the team at Cleveland Clinic as well but it was before I moved to LA when I still had my jpouch. I'm now seeing a great team at Cedars Sinai here and although they seem to have taken care of most of my issues, I'm still dealing with the same little cluster of painful bleeding ulcers inside my stoma which my doctors are sorta stumped as for the cause. Has your daughter's ulcer gotten a chance to heal? What catheter is she using?
Anyways, looking forward to hearing the latest in how your daughter's health is coming along! Your welcome to DM me with any questions about doctors in LA and what not...
Cheers,
Avery