Looking for advice.

What do you mean by leaking?  I have always needed to protect my clothing from mucous discharge & thought this was normal.  The amount of discharge depends on what/ how much I've been eating/drinking.  My pouch is almost 40 years old. 

It always has a mucous drip. At least for the last 9 months and through 2 revisions. 

By leak, I mean shortly after eating a meal it will leak enough stool to soak through the three 4x4’s folded up that I tape on as a dressing. It requires an immediate trip to the restroom. I have tried everything to pinpoint the timing or food, etc and there is no pattern. This doesn’t happen every single time I eat. Just sometimes. How can a valve that the surgeon says looks great do this? I’m back to where I started before the two revisions. 

 Kim  this is so sad and I’m so sorry. You really been a trooper with different contraptions and two surgeries, long waits and traveling. I wish I had an answer.  for what it’s worth, this  would be my approach. I would want another doctor, who is very familiar with the k pouch,  involved in the discussion.   Can your surgeon contact the doctor under whom she learned  the procedure?   Your surgeon has all of the test results and would be well-versed in speaking with other doctors about your problem.    from what you’ve written it sounds like you have a good rapport with your doctor. 

Have you kept a written diary of what and when you’ve eaten, and the  quantity, timing and consistency of the output – – both of evacuating the k pouch and the leaking?  Usually the doctor wants to see a specific diary, even if it is for one week. It might be helpful too also record the fluid input. 

So curious that it doesn’t leak at night. That too should be a clue  

What sort of tests have been done, such as CT scan, pouchgram?    Keep us posted. If I think of anything else i’ll write. Janet

The weird thing is that the 2nd revision surgery was June 18th. The catheter stayed in until July 3rd. From July 3rd until approximately August 7th I didn’t have any leaking. Then it started. The only test so far is the ileoscopy. I tend to be a slow healer as far as swelling going down etc. so her idea to wait a little longer until we take the next step makes sense. With the pouch and valve looking so good and the heavy leaking happening intermittently, and never leaking at night, it is a mystery. A detailed input and output log is a good idea, especially if I end up consulting with another doctor. I still feel blessed that I can work, take trips, etc I just have to make sure restrooms are in my plans. I’m not ready to give up on the pouch yet. 

Kim, I have a suggestion. 

It may be that your valve is just fine but that your pouch has 'unhooked' or fallen off of the wall. Either totally or partially. 

Your symptoms are awfully familiar. 

What happens is that a section of the pouch slips, tilts or slides off of the wall. When your pouch is empty or you are laying on your side, no problem. But as soon as you eat, it fills up, pulls your pouch down from the weight and then pops open your valve. Gas and stool escapes so you run and empty. It gets lighter so it no longer leaks.

You need an opacification (contrast study) of the pouch/valve but with a very specific method: when they inject the Opac into your pouch, have them first drip a few drops into the valve and take a shot to visualize the valve alone, then slowly fill the pouch, remove the cath and take pictures of you on your back, on your right then left side, sitting and standing up. Then do the same after they empty half out. 

It allows them to see the position of your pouch when 1/2 empty and full. 

That was the only way that we figured it out for me. It also saved me major surgery because that is an easy fix. My French surgeon who does not do K pouches (only J pouches through laparoscopy) but has assisted during one of my fixes, went in through a keyhole and reattached the pouch without opening me up. Miracle. I got my continence back.

Sharon

I’m going to print this out and discuss with the surgeon. I think you are correct about what is happening. Plus, right after the 2nd revision, the path of the catheter was somewhat straight. Now, when I put the catheter in aim really far right. 

I have rotator cuff surgery scheduled for Tuesday Dec 4. After I recover from this, I’m going to pursue your theory for sure. 

Thank you! 

Good luck on the surgery...working with 1 less arm or without arms (broke both of mine last year, still broken today) makes intubation a challenge...please, put yourself on straight drain and allow your poor shoulder to heal!

Sharon

That’s my plan. I’m going to show up at the surgery center all rigged up. 

I can hardly believe you are still fighting to keep the Kock! You have endured too much. hugs

kim-Sending white light for your surgery tomorrow and empathy for one arm k pouching. I’ve done it, although not very well.   looking for techniques  due to upcoming shoulder replacement. Janet

Janet:Thank you. I will definitely have some hints. 

Woodstock69: I’m not giving up yet! Especially since I’ve been wearing Ostomy bags for the last month.