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.