Hi, I have a colonoscopy after beating stage 4 rectal cancer. However, my bladder does not function due to radiotherapy damage, and I'm on the waiting list for my only option of a small hole under my existing stoma for my pee to come out. It's called a double barrel wet colostomy. I can't find anyone in the world that has this and wondered if anyone here has it? There has only ever been 20 of these operations done in the UK, and I'm a bit worried. At the moment, I self-catheter and wear the biggest awful pads in my pants, which are so uncomfortable but needed. The operation will be for a better quality of life, but I need people I can speak to that's been through this so they can answer my questions. Thanks x
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Posted by: ejbetty
Geekyjen,
Thanks for the reply. I will be seeing my doctor on Friday and mention Entyvio. I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared. The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade. Turns out I have been diagnosed with LUPUS. It is attacking my nervous system. I had ulcerative colitis in 1996 and they had to remove my colon. Had a J pouch for 10 years, until it started failing. I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently. I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared. I have had two hospital stays now because of the blisters and the paralyzing incident. I will be dealing with this forever now. I have just been working on acceptance.
I love this website because of wonderful people like you!
Betty
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