Living with a valve slip

I think only you can answer this question. I thought about having my pouch removed when I was having issues from c.diff and SIBO then I remember why I got this pouch and kept it. Glad I did, I am doing ok now with my pouch and things got better (just have bladder issues now).

You can always cancel surgery last minute so remember that. Even when on the table to go under you can change your mind.

You're right and I have decided to keep it unless I have no alternative.

Your experience is an important example to me as I know you have been through hell.

I would be interested in hearing from others who have stuck with it in the face of complications.

Cheers

Alex

Hello
Yes these valves have a mind of their own.
40 years on from surgery and it is still one jump ahead.
I have to avoid heavy lifting as this makes matters worse for me.
I just seem to bumble along rather than more surgery. I also have a problem with pain from adhesions from so much surgery so I think things are best just left.

Alexander,
I have had numerous pouch surgeries from the original 3 to create it and put the pouch back on the wall (slipped off) to a few similar revisions over the 1st 20yrs...then abdominal necrosis, valve slippage and a really nasty, failed revision...which led to the next surgery and finally another 12 direct or indirect ones...all to keep this silly little k pouch...I have paid the price of a house to keep my pouch attached to me, lost every last cent of my savings and most of my career but I stuck it out...there is no rule. Some of us feel that life without our k pouches isn't worth contemplating and others just have it removed and replaced by other options...only you know how you feel about it...I gave it all and do not regret it but don't think that I should be an example...
Sometimes a valve slippage can scar in if you keep the tube in for a period of 30 + days, others not...your system seems to work for you so keep it up, just try not to go too long between intubations.
There is another possibility that it is not your valve that has really slipped but either your pouch has detached partially from the wall and slipped down the abdomen pulling on your valve and popping it open when full or a peristomal hernia that is loosening the fit of the pouch on your stoma or valve.
both are more difficult to diagnosis but so much easier to fix .
You might want to discuss it with doctor and have and ultrasound or Scan.
Sharon

Thanks Sharon. I have had a scope and scan and it is just slightly slipped which means problems intubating and occasional seepage.

Since getting out of hospital last week it has actually got easier - I have found if I lie back, relax and breathe slowly I can intubate without using the bougie to find the oath.

One thing you said is very interesting - about keeping a catheter in for 30 days. I was considering that but was not sure if it would work? Sounds like it might be worth a try.

One thing's for sure - I am not rushing into surgery!

Sounds like you have had a very challenging time and I salute your resilience.

Alexander

I meant 'path' not 'oath' (although there is often swearing involved!)

If anyone else has experiences of keeping the catheter in for weeks and the outcome, I would welcome your insight

Alexander

Hi Alexander,


I'm having exactly the same problems as you!
Same hospital and same surgeon.
How are you today and are you going ahead with surgery?

Rachel