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Has anyone experienced air escaping from their K-pouch?  I have had my pouch for 14 years and have been experiencing this for the past year.  It doesn't happen all the time but every once in awhile.  I have asked different doctors at Cleveland Clinic and they don't seem concerned but I am.  My pouch was recently scoped and they said everything looks good including the valve.  Why would this be happening?  It is uncontrollable and embarrassing to say the least.

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Hi, Yes I've had this experience. Usually along with the air escaping there is some discharge of the contents of the pouch.  I can feel it sometimes but not always. I believe the air is gas. Sometimes the gas build up is a lot and there is pressure in the pouch and I HAVE to empty the pouch to relieve the discomfort. But I feel that the gas and discharge are normal. When this occurs, I don't believe that anyone around me knows what is happening but me. We all pass gas whether we are aware of it or not and we all do it whether we have a pouch or not. So I'm sure this is a normal process. But our bodies change over the years. For me if I'm able to empty the pouch with little to no difficulty I'm happy. If the scope came back normal and your doctor isn't concerned, I wouldn't worry about it. I think with all the current events happening stress is up and stress can affect us even if we are not aware of it. So I'm trying to stay positive and calm. I hope you are able to do so too. I hope I've been able to ease your mind a little. Stay safe and well. 

I haven’t had the problem. I have heard that if you breathe through your mouth as compared to your nose then you take in more air and that air can cause gas.  Chewing gum can also cause gas, I would think because it also involves gulping down more air.  Have you changed anything in your diet? Our pouches can be touchy as to what food we consume. Are you embarrassed because of smell? Is so, Devron pills might help.

If you think that there is some leakage than a way to test it is to submerge yourself in a bathtub and see if air bubbles emerge. I think that’s what Sharon had suggested. Probably best to check with her and get it straight and accurate.

Hope nothing is wrong and you can manage to adjust to it. Jan

Thank you both for your replies.  You make me feel better!

I was supposed to see Dr. Qazi for my scope but he was sick and they rescheduled me with Dr. Siddiki.  I was nervous because I have only had Dr. Shen scope me for the past 10 years or so.  I was even more nervous  when we were ready for the procedure and Siddiki asked me if I ever have to insert a catheter to relieve my pouch....ummm, really?  It didn't make me feel very comfortable in his knowledge of K pouches but it all ended up just fine.

I am curious if a revision was ever needed, who there is left to do that?

Dr. Shen is now working with Dr. Kiran in New York City. Dr. Kiran did my revision almost a year ago now. I’m doing great!

I do know someone who had surgery at Cleveland Clinic last year, and the surgeon was Dr. Steele. 
Dr. Shawki left Cleveland Clinic and went to Mayo Clinic. 
Dr. Ashburn left Cleveland Clinic and she is at Wake Forest Baptist Medical Center in Winston Salem, NC. 

I was having some test of my k pouch, long forgot what it was, and the doctor was very interested in learning about it. I asked him if he wanted me to insert the catheter and he said oh yes sure. He didn’t know how to do it and didn’t know how to ask. It worked out well. 

unless I’m mistaken/not updated Dr. Dietz is at University Hospital. He previously was at Cleveland clinic, where he created my k pouch in 2015. I felt very confident and comfortable with him. When Dr. Kiran first scoped it he said it was very well done. Jh

I've had a k-pouch for 42 years with about 4 revisions, 3 of them were due to more severe forms of gas escaping, then leakage and then nipple valve prolapse. I didn't have any issues for 25 years but like with anything, things can wear out. If I hadn't been working at the time and all I had was gas, which was horribly embarrassing, I imagine a few of my revisions could have been avoided. Now that I'm retired and have occasional gas, it still freaks me out but I can always figure out what it was I ate or drank and now intubate more frequently.  I still would go through more revisions if needed to in order to keep my pouch.  The doc I've had do my revisions through the years is Dr. Worsey at Scripps Hospital in San Diego.  

Can I ask a stupid question? What 'position' are you in when it escapes?

Standing, sitting, crouching down, laying down? Yes, it matters. 

If it only happens in one position (crouching down for example) then it may mean that your pouch has 'slipped off of the wall' or 'twisted'. It also means that your pouch is fine, healthy but requires 'repositioning'. A much smaller surgery that can be done laparoscopically. They literally lift it up and reattach it to the wall (often using a mesh repair technique), test it and it's done!

In order to find out if this is the case, first, start noting what position you are in when it happens. (I found out when crouching beside someone in trouble, and suddenly 'whoosh'...scared me to death!) and then try filling the tub to the top and turning/twisting into different positions to see if there are bubbles that escape (Dr Cohen's technique). 

If it is 'positional' then find a very understanding radiologist who is willing to 'play'.

Mine does an Opac/Contrast study. He injects the contrast liquid into the valve and takes pictures. Then he fills the pouch. 

He takes pictures of my pouch laying flat, on either side, sitting and standing up then repeats the process after emptying out most of the contrast liquid. 

That gives a much better image of what is going on in your body/pouch.

Sharon

 

Sharon that is interesting, never heard of this.  Typically it happens when I am sitting or standing.  I really just don't know what is going on.  I am trying to empty the pouch more frequently and that seems to help a bit.  I start a new job tomorrow and am so nervous about the bathroom situation, i.e. will I be able to go when I need to and what not.  Also worried about my pouch just deciding to fart whenever it feels like it, it can be loud and smelly and it is not something I can control or hold in...it just happens.  Ugh......

Devrom chewable tablets , will be a lifesaver! Wish I had found it decades ago, it is the only thing that literally helps with odor, they have a website. So until you get your problem solved, I would start with that.  I don't know of any docs or radioligists that will take directives from patients, hope yours will gude you to the right solution.

I carry a purse size spray bottle of a product called “Mask” that I ordered from Amazon. It’s not over powering or extremely fragrant, but unless I’ve eaten something over the top, it does a very good job without being too much. It comes in a large bottle and I had an old empty Poo Pouri purse size, so I just keep filling it up. I’m not a fan of most of the poo pouri fragrances. 

Do a site search for Devrom. Lots of information about others experiences. And best prices. Don’t get discouraged if it doesn’t work right away as it took me about two weeks for full effect.  There’s some foods that it just won’t cut, but that might differ for a person. Good luck and I understand the smell problem embarrassment. It’s universal.

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