Doctors tell me I need to have a new pouch made or re construct old one due to some twisted pouch / Has anyone dealt with this. And if I decide not to do the surgery what problems could happen. Also got in touch with arizona mayo clinic = has anyone been a patient here?

I have a k pouch, not a j but it is basically the same pouch with a different exit...mine got twisted 3 xs over the last 2 yeras...I had a hernia and my pouch had come down off of the wall...twisted into the hernia...(ouch!).
All 3 times the surgeon was able to safely extracate my pouch from the hernia and put it back on the wall..without having to alter the pouch itself...so that is all I know about twists...I don't know how or where the j pouch is anchored...so maybe what they mean by twisted is different...but according to the MRI, scan and ultrasounds mine always looked like half-full baloons that were just , well, twisted!
The danger? Strangulation. Necrosiss. Tons of stuff that we really don't want to happen to our pouches..plus pain.
Have your doctor explain in detail what is going on and what he wants to do about it...or get a friendly radiologist to help you out...
Sharon

Hi,

I had 3 wonderful surgeries @ Mayo in Phoenix. My surgeon was Dr. Tonia Young-Fadok, and she is the only colorectal surgeon I would consider using there. Her speciality is minimally invasive surgery and I had 3 j-pouch surgeries (b/c I was soooo sick and b/c of the damage prednisone had done to me) and only have one 2 inch scar from all three surgeries.

I would highly recommend her!!!!!!!!!

My jpouch twisted twice, but my surgeon untwisted it both times. It was like having a blockage b/c it was completely twisted so nothing could pass. I had surgery to tack my jpouch in place, but I kept it.

So Lizz, you had two surgeries to untwist your pouch? Were they as bad as step 1 or step 2? And the doctor didn't say it twisted because your pouch was very big?

Well, the first time it twisted, I was put under to do surgery to untwist it, but my surgeon started with doing a scope and he said that when he got to the beginning of the twisted part and applied a little pressure, it sort of popped and untwisted, so no surgery. The second time, I was WIDE awake and his fellows shoved a sigmoid scope up there and I heard the loud pop when it untwisted. Apparently, I didn't make scar tissue like most ppl. do after the surgery where the Jpouch adheres itself to your tailbone. The surgery I had basically tacked the pouch in place so it wouldn't twist anymore. I do have a large pouch, though I'm not sure if that had anything to do with it. Hasn't happened since that last surgery. It was a pretty major surgery. I had three steps, so the first was just the colectemy, which was easy, the second was Jpouch creation which was bad, third was takedown. Surgery was easy for that, but learning to poo again was kind of hard. I think this one was just hard because of being cut open again, guts messed with, etc.

Fortunately, I only had one incident of twisting....worst pain I've ever had in my life! My surgeon admitted me to the hospital and kept me on pain killers while he waited and watched. About 4 days later it untwisted! Two more days and I was sent home, no worse for wear and having avoided a surgical intervention! It has been 6 years since that episode and no repeats (fingers crossed!!!!).

Fascinating.

Does anyone know what causes it to twist? I had my small intestine twist five days after my colectomy, but until this thread I've never heard of J Pouches twisting.

There are some fantastic surgeons in LA who could fix your pouch. No need to travel to AZ unless you have other reasons, besides a surgeon, to go there.

Sue

My surgeon had no idea why it happened other than the not making scar tissue problem. It is supposedly very uncommon for the pouch to twist.

Does it only twist when you have a really big, oversized pouch? I talked to my husband and we decided, if I need a revision we will seriously consider one of the clinics that specialize rather than staying with the surgeon here. At least for a second opinion. Thanks all.

But seriously, does anyone know the percentage of redundant pouches that twist? I asked my doc how I could prevent it twisting (again) and he said eat small meals. Really?

I dunno. Mine said he had only heard of one case of this from a colleague-never seen it, and had no theories as to why it happened other than it not making scar tissue. Just get the sucker tacked down so you can live your life. I just thought of it as a freak thing. I'm sure there were a few reasons why it happened, but considering that a jpouch isn't exactly "normal" anyway, who knows how they will act? You may never know why, best to just find a solution.

Thanks Lizz.

I guess I'm just wondering if there is anybody out there who knows what the prognosis is for a person with a redundant pouch, in other words a really oversized j-pouch.

Mine is big too. It's not functioning optimally, but I have some anal muscle spasm issues, so I'm not sure it's totally related to it being big. I'm doing physical therapy to try to help me empty properly, but if this doesn't work, ta ta J-pouch.
I also have Crohn's so big and twisted isn't the only reason I'm considering going back to the bag.
Good luck.