Hello everyone.
I had the reversal surgery done in February of this year to remove the external bag and hook up the pouch. It's been a roller coaster ever since, with pain and discomfort, and infections. Has anyone else experienced this? I feel like after 5 months, things should be starting to be as normal as they will ever be. Any info would be greatly appreciated.
Thank you in advance
Scott
I don't have any experience with this, but I am sorry you are going through this. What does your surgeon say?
So sorry, hopefully someone that's been through the surgery will jump on with answers.
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I had a j-pouch for 18 years, had a 5-6 year period that was okay but lots of ups and downs until I grew a fistula that attached to my lower vertebrae and led to chronic osteomyelitis, and I have a permanent ileostomy now. I've heard of a few long-term j-pouch success stories, but not many. Do your own research and get to know any warning signs for problems. It is still early for you, so it could get better, and I hope it does for you.
Thank you so much for responding, Bob. I truly appreciate your feedback.
I'm currently waiting for a second opinion at the University of Pennsylvania.
I will absolutely continue to journal how I'm feeling, etc.
Thank you again.
Scott
Ohhhh Scott!!!
I hate that for you! When my large colon was removed, a J-pouch was placed. They said it may last 5 years. It did. Exactly. The entire 5 years were awful!
I was always emaciated, in pain, dangerously infected, dehydrated…. Ended with the small intestine twisting around the J-pouch, becoming necrotic and nearly dying. Outcome = ileostomy. Which should have been done from the beginning.
I hope you don't put up with it very long. It can go on for years until a crisis occurs.
G-Day Scott,
I also had a J-Pouch for 18 years after having my colon removed. But I had 18 years of hell, always looking for a toilet and lots of pain. I now have what I should have gotten all those years ago: a wonderful ileostomy, and the last 4 years have been a breeze.
Good luck.
Regards, IGGIE