Hello K-Pouchers!

Have any of you heard of or had experience with the Nu-Valve? It is essentially a 24/7 catheter which you can clamp off through special faceplate (that comes with it) that rests above the stoma.

The large diameter valve portion (which is fairly rigid) passes through your "constructed valve" and once it is positioned inside the pouch a "balloon" is inflated to prevent the "catheter/valve" from coming out.

I am wondering if anyone on the forum has heard of it and/or had any experience "good" or "bad"
with it.

Thanks,


Alex

where did you hear about it?

Hi Leslie!

Well -- as a matter of fact Dr. Fazio tried one on me after my first surgery (St. Louis 2006). Because my pouch and valve were so compromised I only used it for a couple of weeks and went to St. Louis to have it removed. When I heard everyone else talking about new types of catheters I was surprised that no one mentioned the NU-Valve. I don't know if Dr. Fazio is still using it. I was thinking about giving it another try.

I for one had not heard of it and am interested to hear more about it. Not sure if I would go back for more surgery to have it implanted, but certainly an interesting discovery if it works.

MikeS

I do remember you using it..didn't know the name of it!

I asked Dr Shore's nurse. She said they keep them on hand in the office for those having difficulty intubating and waiting for surgery.

Mike --

Dr. Fazio put mine in right in the office - It really hurt but my stoma and valve were abnormal and that was part of the problem.

I believe it is generally done as an outpatient procedure...

I was curious if anyone had an experience and long term success


Alex

I had to use one in August, or at least tried to when my valve started to have problems.
They sent it to me from the states($350.00) and I had my IT here put it in...all considering my condition, it was a miracle that she got it in, but I had to pull it out that night.
I think that it contributed to the severity of my prolapse and enlargened the hernia...I felt a rip when removing it.
It is not as easy as it sounds to use, less then foolproof and very slipery, the clip goes flying and the latch does not hold. In other words...if you really need it...then fine, but no, it is not something that I would choose to have volentarily.
It is a large, silcon tube with a tiny tube that youinject with fluid that enflates a cuff around the base. That is supposed to hold it in place (not if you are herniated!). The tube is then put through a faceplate and folded back onto itself and held down with a slid clip. Very akward to use but then again I am not that good with my hands so....
Good luck to those of you who need it.
Sharon