Well it seems that bad has just gone to worse here. My valve has finally popped out!
It is pushed about 2 inches outside of my stoma opening. I am still able to "push" it back in and work the tube in to intubate but by morning I will be on a strait drain with leg bag. The only problem is that gas and fecal matter is pouring out all around the tube too. Dr. Nicholls in London told me not to go to anyone else than Dr.Cohen in Toronto because he knows my pouch best and has had a very good success rate. He has advised against trying anyone in France or the states saying that he doesn't think that it would change much. I did call Dr. Fazio's office today but too late. I will try again tomorrow just in case.
Has anyone else had the stoma literally push right out? If so, what did you do and how long did you last until surgery?
I still have to find a flight back and travel by plane 7 hours plus airport time etc... No idea how I am going to do this???? Can I put some sort of outside skin bag on? I've never had one and have no idea how it works.
All suggestions welcome.

I would still call a different Dr. The Toronto Dr. does know your pouch but just can't seem to fix it right. What if he would stop practicing, would that mean you can't see another Dr.! Dr. Fazio has probably seen it all including fixing someone else's work. You are just suffering to much!
Karmen

Be careful if your valve pops out and does not go back in. If blood supply is cut off to the valve, this tissue can die. Watch the color of the valve. If it starts to turn dark, get to a doctor.

I've said this before, but for the last time. Go to Dr. Fazio! They have places on campus there to stay that is closer and cheaper than a hotel.

Ask Dr. Fazio what to do with the prolapsed valve.

I called Dr. fazio last night but the office was closed. I will try again today taking into account the time change.
I am not excluding anything. Starting to worry about how I am going to be able to travel. Like it or not I am back on fludids and very low residue. Hard to accept. At least there is no pain other than emotionally.
Putting stuff in order, banks, taxes, family, work...I know that this is going to be another 2 month abscence from the house. Harder and harder to deal with.
I just want it over.

Skn,

I am all for having more surgeons do this procedure and get more practice so in the long run we are all better for it. It sounds like you have become one of the troublesome cases that most normal top notch surgeons can't help anymore. At this point, I wouldnt mess around with second best anymore but would go to the surgeon everyone (myself included) was considered the best at this type of thing. Before seeing Fazio I had gone through 13 different surgeries. One surgery with him and I am now doing great. Its a much longer flight for you, but it was still a 4 or 5 hour flight for me. Follow up isnt easy, but being healthy again is worth any cost.

Mike S

thanks married guy,
I called DR. Fazio today and he is having a ilio valve sent out to me to hold me for the moment.
I will have it put in by my ET and I should be ok for a while.
He said that he wouldn't even consider going back in for a year. I'm not sure if I can keep doing this every year!!!
For now I hope that the valve gets here soon before anything else blows out of me!
Thanks for the encouragement
Sharon

Sharon,

After you put the ilio valve in - when would he do the surgery?

What do you mean he would not consider going back in for a year?

If Dr. Fazio fixes your valve - you won't ever have to go back in. So why do you say you can't keep doing this every year? You are confusing me.

Take care,
John

Sharon
Dr Fazio was the same with Chris. He required that he wait one year before the k pouch after the j pouch excision. Seeing you only had surgery 2 months ago, it makes sense he would not want to open you up, not sure if Dr Cohen will feel the same way.
Once you get this straightened out you shouldn't dwell on what might be a year from now, just for the moment. I know you are exhausted and have had multiple surgeries, so did Chris. It's the NOW that matters most.
Get through this crisis first before you worry about the possibility of another problem. Think good thoughts. We are all here to support you now, you have been through too much alone for too long.
Breathe.

Bodoni,
They are shipping me an artificial valve that is held into place with an inflated ballon inside the pouch. On the outside The tube is permanently afixed to a patch and it hangs out. The whole thing is supposed to be continent. It has to be changed every 3 months and can be kept there for up to a year according to Dr. Fazio.
He says that he would recomend this solution until he feels that I am sufficiently healed from the last surgery. He would not go back in until next summer.
So, there you are. I am still in limbo but with a possible solution to the prolapse.
I feel weak and tired and very confused. I was supposed to be clebrating my 3rd wedding aniversary and the end to surgery. Instead I am explainning to my husband why it is still all up in the air and another year is going to waste.
Tired of being tired
Sharon

Sharon,

Oh, I see. Some on here thought you had a J-pouch and that was why he had to wait to construct a new valve, etc.

A year sounds like a long time, but if he recommends waiting til next summer to make a new valve - that's what I would do. Is he going to make a new pouch too - or just re-make the existing valve?

I can see that you are tired of all this, but everyone says you have the best chance with Dr. Fazio. I agree. And next summer will be here before you know it.

Happy 3rd Wedding Aniversary!

Take care,
John

Sharon
I doubt that anyone on the k pouch forum thought you had a j pouch since there is no valve involved and you posted on the k pouch forum!
Since Dr Cohen is a CC fellow and has been doing surgery as long as Dr Fazio, I don't doubt his skill. I do believe that Dr Fazio sees more K pouch patients and does more corrective surgery on those patients, but I could be wrong since I don't know Dr Cohen. CC is in Toronto now too. I have no doubt the 2 drs will put their heads together when Dr Cohen returns.
Take one day at a time and I hope the ET can get this valve in and functioning for you.
I know what an ordeal this can be for family members so keep in mind your husband does not really know what you are dealing with. You can tell him but understanding is another thing.

Well, FedEx was good as it's word and the "valve" has arrived safe and sound.
Such a small piece of plastic for 300.00$!!!!!!
It looks like a fat tube with only the tip being opened. No side holes. (scary enough)! There is a condom-like reservoir that blows up like a ballon. You insert the valve like the tube, the ET inflates the reservoir with 30ccs of water +/- and then you put the faceplate on and afix the tube to it and clamp it back. Sounds easy, right?????? I fear that some idiot is going to tell me to live with this for life No can do. Living another hyatus in my life, time when I can make no plans, once again is killing me. 7 years of "this is the last one!" and now this. Thsi is definitely not the last step!
I am freaking .
Going at 4:30pm to get it done and I am miserable already. Anything permanent scares me. This reaks of semi-permanent.
My husband, funny enough is getting Zen! He says that if this works we can try and keep it and if not why not consider an outside bag????????? Is he nuts I have spent 30 years trying not to end up with an outsider, I can't give up the good fight now. He thinks I am beautiful (he had better!!! )and doesn't want to see me suffer any more than I already have. He doens't realize that outsiders are just as prone to problems, just different ones, and I would have to invest in a whole new wardrobe (well, maybe it does have some good points!
I'm trying to feel optimisitc but I feel sick.
Be back in a few hours. So much for bikini season.

Wish me luck
Sharon

Sharon
There is someone I know who used this very same appliance to keep his Kpouch stoma/valve in working shape. He received it from Dr. Fazio and it served the purpose it was intended for
You have to keep thinking optimistically..it helps the healing process!

It is a sick joke!!!
I just spent 360.00$ for a tube and a clamp!
I thought that he was sending me a valve (that is what he said and that is what the manufacturer said!)
It is a tube held in by a cuff and that sticks out of my body!!! I call that strait drain and can do the same thing more discretely with my own tube, a clam and a piece of tape. This thing is uncomfortable, hard on the outside and stupidly built.
There is a tiny piece of plastic that holds the tube down. Easy to drop down the toilet. I am pissed. They made me think that I was getting a prosthetic valve. There is no valve involved. You are just supposed to fold the tube over so it doesn't leak. It leaks air and liquid!
If someone had told me that I was paying that kind of money for a new tube I would have told them to s-ove it!
It is just not fair!!!!Isn't it bad enough to be going through this kind of thing again and again? Now I get lied to and cheated by people who are supposed to help me!
Not Kool!

Request a refund!No demand a refund!Dissatisfaction is not acceptable when you pay for any product. Did you pay with a credit card? Dispute it through them.
Just suggestions.