Seeking Advice: Removing Disconnected J-Pouch - Worried About Scar Tissue

Does anyone here have a disconnected J-pouch that just sits in their pelvis? I want this pouch removed but scared to death to go through another major surgery due to scar tissue issues from past surgeries.

Hi Andrew

I have one of them in there somewhere, doesn't trouble me, don't even know it's there really, I enquired if it needed to come out but the answer at the time was, "you have been through enough, maybe one day". They have a look in there every two years, and I'm definitely in no hurry to have surgery again.

Hey, thanks for the response. My body is very active with fluid build-up. I have to cath it every day, and over the last year, I've had structures that have to be dilated under anesthesia. The opening to the pouch keeps closing, so with the fluid build-up, I get extremely bloated and severe pain. I keep worrying the pouch itself will explode with fluid build-up. So this is why I'm worried to have it taken out due to scar tissue issues from all the previous surgeries in my pelvis. When I had the J-pouch created, my bladder was cut during the surgery. Not a fun time.

I'm sorry you have had such a tough time with that, it's no fun suffering, I hope it works out for you before too long.

Axl

Andrew D

I had a J-pouch for 26 years. It was okay for about 5 years and for the last 20 years, it slowly deteriorated.

The doctor I had been seeing from the beginning wasn't offering me any options, and with my health insurance, I was trapped in a network, so I had to change my health insurance that allowed me to go to any doctor who accepted it.

The new doctors said the pouch had to come out.

By the time it was removed in 2017, it was serving no purpose at all.

I don't know how the decision was made to remove it. I wasn't even aware there was an option, but I'm glad that it was.

You might want to seek another colon and rectal surgeon who will offer you some options.

The recovery was tough because I got my ileostomy at the same time. My butt was closed completely, and I couldn't sit or lie on my back for weeks. No sitting on the toilet either! Couldn't lie on my stomach either because of the ileostomy.

But I survived, and if you need it, you will too.

I hope my experience helped.

Good luck, and if you want to ask me anything else, don't be shy.

E I