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Hi. I am 11 years out from my take-down and I'm 40. Things were rough for the first couple years after, but I'm doing well now, pouch-wise. I don't actually take any meds at all for gastro stuff so it's a blessing considering how bad my colitis was.

However, it seems like now I may need surgery to remove some ovarian cysts. My gynecologist is not familiar with J pouches. He seems a bit over-confident that it will be fine, and has told me he'll have a GI doctor on hand during the procedure in case he is needed. This medical center is a major one in our state, but it is not a teaching/research hospital like Hopkins, Mayo, etc. I have found in my experience that the non-research medical centers are hit or miss. I've had many misses, and I do not want to screw up the success I've had with the pouch.

I am wondering if anyone has had ovarian surgery with a J pouch and if I should probably be finding a surgeon that is familiar with both. it seems like a hard thing to find because even though J pouches are not rare, they aren't common either. I have an appointment with my GI doctor who IS at a major research hospital in my area (Penn Medicine in Philly). I did my surgery in Pittsburgh at UPMC Presbyterian but I moved in 2013 so I was not able to see my original surgeon anymore for follow ups (it would be a 7-8 hour drive from where I am in Delaware.)

So seeing my original surgeon isn't really possible. My Penn Medicine doctor IS familiar with J pouches so I trust her. But this local gynecologist I don't. Am I overreacting? Anybody know of a good lady-parts surgeon in this region that knows about j pouches? (Maryland, Pennsylvania, Delaware)? If not, is this necessary?

That was a long way of asking -- does your GYN surgeon need to be familiar with J pouches to not screw it up as a casualty of what would otherwise be a pretty routine procedure on the ovaries?

Last edited by GinaPouchtastic
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Hi there! I had this exact situation. No problems at all with my j-pouch since it was constructed in 2004, but last year I had a huge ovarian cyst that wouldn't go away after several months of surveillance. I'm at an increased risk for ovarian cancer, so my doctors felt that it needed to be looked at/removed. I had several conversations with my gyn-onc about my desire to have a colorectal surgeon present or at least on call during the surgery. She seemed to feel confident that she could handle it herself but told me that she would talk to one (not sure if this actually happened). Long story short, the surgery did end up being quite a bit more complicated due to scar tissue and adhesions (from bowel surgeries) surrounding my ovaries. She ended up having to remove the entire ovary, but I think that was more because the cyst was so big rather than a result of my previous surgeries. (Side note/tip so you can learn from my mistake- My recovery from the surgery was harder than I expected because it took my bowels almost a week to "wake-up," and I had awful gas pain/couldn't keep anything down in that time. I had kind of ignored their advice to take colace/metamucil ahead of the surgery because I thought I really didn't need any help in that department, but in retrospect I wish I had listened to that part :-))

I will be having my other ovary removed in the next 10 years to reduce my cancer risk, and my surgeon commented that when it comes to that surgery, she will definitely want a colorectal surgeon involved because she saw that some of my bowel is attached to that one, and she's not sure she will be able to identify what is ovary vs. bowel. I'm pretty sure I'll be seeking out a major research hospital for that surgery since I've lost some confidence in my current doctor as a result of this experience. (I live in central VA and this surgery was done at UVA, so I may be looking at the DC area in the future.)

SO all that to say, I think you're wise to be considering where you want this surgery performed. If I were you, I would probably be willing to travel to get to a place with the most experience and expertise. Best of luck, and let me know if you have any other questions!

Last edited by susbo

Yeah that is sort of my fear. That conversation you described sounds like the one I had. I am pretty sure I DO have scar tissue and possibly adhesions because I have before. They caused bowel obstructions years ago.

Did you have any lasting changes to your pouch behavior after that operation or did things go back to normal after your bowels woke up?

I hope I can find someone. Really what I hope is that my cysts shrunk and I find out at the next check that I don't need any surgery.

I had my colon removed in 1995 and in 2002, my gynecologist found a growth in one of my ovaries.  It presented itself like it was cancerous and after a few scans and scary appointments, the doctor  (head of gynecologic oncology surgery at Northwestern Memorial in Chicago) deemed it to be non cancerous but wanted to remove it asap.  I was 38, had decided against having children and for various other reasons, including that I had already had so many abdominal surgeries (2 for the total colectomy, 1 for a hernia), we decided to do a complete hysterectomy.  I had no concern as I was in very capable hands at this large teaching hospital. The jpouch didn't phase him at all ... the hernia repair upset him greatly though, as it had done poorly (also at the same hospital I just raved about).

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