Pouch opening, not stoma, too small

Ok Dpol,
That is a totally different thing that you are describing...have you been scopped to confirm that as the diagnosis? Or is it just the 'feeling' or 'inability' of getting the tube into the pouch once it has gone through the valve (difficulty finding the pouch opening?) Very different things...a stricture(narrowing) of the opening may well be treated with a baloon dialation depending on the doc...they put the scope in, and under a florascope inflate a baloon that 'stretches' the zone...not really painful or difficult to do but it may need a few repeats and they have to be really, very careful while doing it not to stretch too far.
For the other possibility...it could indicate a valve twist or a peristomal hernia that has 'disaligned'the valve with the pouch or a 'U turn' spot in the valve...totally different treatments too.
Valve twists require full out surgery when they become problematic. Peristomal hernias can be dealth with through laporoscopic surgery if you find someone willing to do them that has a bit of imagination and knowhow...(my k pouch surgeon taught my laporoscopic surgeon what to do)...as for the 'U turn' spot in the length of the valve...I didn't realise that it was possible until it happened to me...it comes from constantly 'pushing' the tube in and hitting the wrong spot (not the opening but the side of the valve somewhere) and creating an indentation that keeps getting deeper/larger with every time that you hit it...they tell me that it requires surgery but I am living with it for now...just intubating slower and more carefully so as to not aggravate it...been 2 yrs...so far so good. Don't know if you stop hitting the spot what happens (will it heal or stay the same?) but am trying hard...
Hope that this gives you some responses to your question.
Sharon

Sharon, they dialated my opening three times with a ballon and is has worked well for 3 months. My doctor who is very experienced with Kpouches said it is a rare problem and he is not sure how long the cure will last. I was just wondering if anyone has had the same problem and subsequent work done and long thier fix lasted. Thanks for your always helpful input!

Does he suggestion any preventitive or paliative measures to keep it from shrinking again??? Using a larger caliber tube or keeping one indwelling for a while (over nights with a 32 or 34 French for 1 or 2 nights a week???)Does he explain why it happens or what causes it???
Hope that it is a permanent fix or at least very longterm...
Sharon

There is no real plan. he said he has only seen this condition in people who have had the pouch for a long time. I also wondered about keeping a tube in once in awhile. If I find any helpful suggestions I will share.

I guess that you could try working with a larger caliber tube occasionnally...working your way up.
What do you use for now?? Are you using a 30Fr? or have you had to go down to a 28? I believe that the Marlene Cath is more flexible and the Medena is more rigid so you might want to use a slightly more rigid one and tape it in overnight...start out by using your usual one and then work your way up one size...as soon as you feel it tightening on you, do not wait for it to get worse but tape it back in...I know what Dr C would suggest and that would be it...he is a great believer in taping the tube in for long periods of time in the hopes that things scar in around it...(yup, I hate doing it too but...)
Keep us posted on it
Sharon

Thanks again, I will.

Dpol,
Do you use a strait or a curved cath?
Sharon

I use the 29fr Weber and Judd that is curved. Started using it at the Mayo and have used it ever since. It is easy on my body.

You may want to try using a strait one and see if it is easier to work with now that you have a narrowing????
I used a Medena 30 curved for 29yrs and have had to switch to a strait cath since my recent problems...seems to work in my case...it may be worth the try...
Sharon

If I start having trouble again, I will give it a try.