Hi I think I have slipped valve, around four months after my k pouch formation I found it increasingly difficult to get the tube in, it just kept bending, going deeper and getting nowhere, resulting in me vomiting for days until the tube can get put in, I ended up hospitalised several times and having my tube taped in for many months, I had a heavy bleed coming through the tube (unknown reason) for 5 days then I was able to intubate normally (which seemed bizzare) for 6 weeks without any problems, now the tube is bending again and it seems to go into little pockets and feel tight when I am near the valve before it goes into the pouch if it can get in atall. At the moment my tube is taped in most nights and at weekends as there is no-one at the hospital at weekends that can help. The longer the tube is out the more difficult it is to put back in. When it worked it was fantastic and I dont want to lose the k pouch but the surgery was a difficult one and was a horrendous recovery as i ended up having other health issues and dont feel strong enough for another op but cant go on like this. Any advice would be appreciated, I know the valve repair is still a big op but if the pouch has to come off the wall etc.... I dont know how my body will cope. Has anybody else experienced such problems? I cant take morphine and the epidural only worked on one side last time, is there any other forms of aneasthetic that can be used? Thanks for reading.
Maisy.

So sorry Maisy but it does sound like a slip...keep doing what you are doing, keep the tube in (sometimes, rarely if it stays in long enough and there is no further trauma then it is fine but it has never worked for me)...I've had a few slips that were repaired with full open surgery...no fun at all...is it possible that you may have a hernia or that your pouch is off of the wall and twisting your valve? When you finally get the tube to go in is it always in the same direction or is it in a differnt direction each time (mine moves around)...Tiffy has managed to create a system where she tapes the tube in and wears it that way all the time...she plugs the end and it stays put...you may wish to PM her and ask for the diagram...
Sharon

Thanks Sharon, I agree I do think it is a slip and maybe because it was taped in for months thats why I got 6 weeks out of it, we were hoping it had sorted itself out but.... Well it did change direction when I first got intubating problems but now its usually the same way but there seems to be a curve when I first enter and tight areas, then its feels like little tight pockets it pops through when I push (gently in and out to get through them) but it goes in pretty far before it gets near the valve opening then if the tube is not bent (but mostly it is bent and I need to start again) too much I have to pull in and out gently twisting the tube etc to try to find the opening,it feels like the valve opening to the pouch moves about just out of reach, left, right or too far away, I dont know if I am explaining it right but thats how it feels to me. I have became quite an expert at intubating but if left untaped for any length of time it can become impossible. I do have a system for taping in and plugging but it is really makeshift and not ideal so I will pm tiffy as any help and different ideas would be appreciated and anyone with advice and thoughts can only help.
Thanks again maisy x.

Maisy, could you PM me...I may have a solution for you...
Sharon