One of my doctors came across this and and sent me a txt message.
https://www.nejm.org/do/10.1056/NEJMdo006973/full/
I personally do not suffer from pouchitis, but I thought it was worth mentioning.
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I’ve been on it over 8 years already. Does it help? Not sure cause I’ve recently been told my issues are not pouchitis, don’t ask.
@AllyKat posted:I’ve been on it over 8 years already. Does it help? Not sure cause I’ve recently been told my issues are not pouchitis, don’t ask.
How can I not ask?
I had my surgery 23 years ago with many complications. The biggest one was that I developed an internal hernia when the blood supply was pulled down into the pouch. It was never caught even though I’ve been very sick all these years. Everyone assumed it was the pouch or adhesions. No one knew what to do with me. Finally they decided to give me a bio drug cause I was told I had chronic pouchitis, inflammation. But recently I started to have very bad issues and after 5 surgeries this hernia was found. Most of my intestines had dropped into my pelvic area and twisted around the pouch. Now the thinking is that this was the cause of my inflammation all along, duh, I’m lucky to be alive, but maybe not, cause this defeat has never been seen before. The surgeon and GI have not come to odds over this. Did the Entyvio help bring this inflamation down? Or did the surgery? Idk, no one knows? It’s a mess and I lost 23 years of my life. I’m actually afraid at this point to stop. Nov will be 9 years.
@AllyKat posted:I had my surgery 23 years ago with many complications. The biggest one was that I developed an internal hernia when the blood supply was pulled down into the pouch. It was never caught even though I’ve been very sick all these years. Everyone assumed it was the pouch or adhesions. No one knew what to do with me. Finally they decided to give me a bio drug cause I was told I had chronic pouchitis, inflammation. But recently I started to have very bad issues and after 5 surgeries this hernia was found. Most of my intestines had dropped into my pelvic area and twisted around the pouch. Now the thinking is that this was the cause of my inflammation all along, duh, I’m lucky to be alive, but maybe not, cause this defeat has never been seen before. The surgeon and GI have not come to odds over this. Did the Entyvio help bring this inflamation down? Or did the surgery? Idk, no one knows? It’s a mess and I lost 23 years of my life. I’m actually afraid at this point to stop. Nov will be 9 years.
Thank you for sharing. You are pretty tough to have lived through this. You: "Armageddon? Whatevs ...I have already had my guts inside out and twisted inside my body. Do what thou wilt."