After returning from Scripps La Jolla, CA (6/11/'14) where I had a dilation in Interventional Radiology with Dr. Goldklang, GI MD from Encinitas, CA I now have eliminated the narrowing at the entrance to the pouch as the reason for my severe pain.
My first CAT scan Dec 5, 2013 by Dr Worsey he decided the narrowing at the anastomosis (where the small bowel joins the pouch)was the reason for my pain which started 6 months before that.

This pain is so severe that my heart rate doubles severe sweating and I have to lie on my side with the catheter in until a large amount of liquid stool and gas comes thru. Then pain relieves. The only thing that made my life tolerable the last year was drinking at least 2 glasses of grape juice everytime I ate. I only ate one meal a day in the evening. At the end of this adventure I was wearing a leg bag at all times.

When I woke up last Wednesday from the procedure which was done using Propofol (anesthesia) MD was gone and nurses told me the procedure was a success. I flew home several hours later and did some very serious suffering on the plane from gas expelling over the next 6 hours.

Discharge instructions: Resume normal diet. No way could I. I was so sore from the gas blowing up my small bowel I just sipped fluids for a couple days and when it didn't get better I started on Cipro antibiotic 2x a day. Maybe I have an overgrowth of bacteria?

Now that I have eliminated the kock pouch as the cause of my troubles (maybe it contributed) I have to start testing the rest of the bowel to see what is the source of my pain. I will stay up here near my home at least.

I am posting this for anyone FYI in case this happens to you or you can help me. I will now call Dr Zagarra's office at Sutter downtown since he is a colorectal surgeon and is not afraid to work on me. Small bowel follow thru is next test I think Let me know if anyone has any ideas???
Jeanne in Placerville, CA jandjscott@sbcglobal.net
Original Post
Jeannie,
Please read the rather long winded answer that I just wrote to Cathy...you might find an answer in there somewhere.
I am thinking of pouch twists, the pouch falling off of the wall or a small, hidden hernia between the pouch and the wall.
All of those can be extremely painful, no one is looking for them or knows how to diagnose them they can make you life a pure misery.
Are you having intubation problems? Still?
Sharon
Hi Sharon
I have never had problems putting in my catheter. I have tons of gassy noise around the naval or above it and then relief from pain. This along with a CT scan made it appear that the narrowing was the cause of all the pain issues. Thanks for answering my rather long message also. I guess I am on to the next gastroenterologist at UC Davis. It is a teaching hospital maybe I can get someone interested in helping me closer to home. I will mention the hernia.
Jeanne
I have had no luck at Stanford ever withy a Kock pouch. Since I am from the San Mateo, CA and have much family there it would be my choice of course as Stanford is where I had my Jpouch done in 1991. However since my surgeon retired no help from anyone there with the kock. If anyone knows of a colorectal surgeon so close to home let me know please. SF is also not available with a kock pouch surgeon
Thanks anyways, Jeanne
UPDATE: kock pouch removed permanent ileo

I finally had surgery on July 17, Scripps Memorial La Jolla, CA. Dr Worsey and Dr Beirmeister found my pouch had fallen into my pelvis. Then my body grew scar tissue and blood vessels all over it. Took him 6 hours to get it out. Another kock pouch could have given me short bowel syndrome and a shortened lifespan. Now looking back I should have flown to La Jolla, immediately after the very first episode of severe pain that lasted over 30 minutes. Instead it kept going away and coming back confusing me as to whether it was a permanent problem.

I had to fly to my appointments by myself and the expense and hassle of going to the Colorectal surgeon, Dr Worsey made me put it off. Never should have done that.

I am now post op day 15 and can not stand more than an hour before severe low back pain becomes unbearable and I must sit. I hope this is not a permanent problem. I have fibromyalgia and sometimes we do not get rid of pain issues for a long time. I came home with low Iron and B12. But I flew home post op day 6. Dr Worsey was amazed that I could do it. I am 63. He is awesome and very caring. The nurses at Scrips wow they are so knowledgable. Stacey who had pain mgt expertise took care of me first 24 hours which I cried in pain constantly. She finally got it managed with a dilaudid PCA and IV Torodal (sp).


PS The itching from the ileostomy is making me nuts. I have used 1 appliance every day since coming home due to the itching. This is going to get expensive. Medicare only pays for 8 pouches a month. I guess it is time for me to use another bulletin board now for how to stop the itching.
Jeannie,
I am sorry to learn that your kock pouch did not work out for you. It is my understanding that Medicare will cover more than the “standard” number of pouches, but your doctor will need to provide written documentation for the number needed per month as well as document this in your medical record (should Medicare request a copy). I cannot suggest anything about your stoma itching since I have a BCIR. You should be able to get suggestions on the UOAA Discussion Board. Hope everything works out well for you.
Bill
Hi Jeannie,
I am so sorry that you had to go through this and lost your pouch in the end...did you have any other pouches done and removed or was this your first one (sorry I am brain dead at the moment and remember nothing...)
I never had a j pouch but went strait to K...when needing valve repairs and bowel resections etc I asked my surgeon if I was at risk of short bowel and he informed me that no, if he had to create a whole new pouch there would still be enough to go round...the pouch takes over a lot of the intestinal functions so he did not consider a redo to be dangerous for that reason...
Not advising or hinting but just for your information.
Be well, be safe and take good care of yourself and your new anatomy...I hope that the itching stops soon.
Sharon
Hi Jeanne,

I'm very sorry you lost your KP. My understanding is adhesions develop for some people from day one of many types of surgery and become a bear to deal with. Surgeries to remove them make more adhesions. Don't play the what if game...just heal now. You did everything you could.

There is so much ostomy support nowadays. Hopefully they have new and improved adhesives and products to make it easier.

Wishing you a full quick recovery. Best, Janice

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