Perhaps your doctor at Mayo could recommend a GI close to your home who could re-insert the catheter should the need arise. Personally, I prefer to not be dependent on others and the possibility that they may not be available when you need help.

Bill

Hi Jasmine!

I just read your post and I know what y mean as it did happened to me in the past a few times! I needed to get a surgery not funny.

I have a similar situation, the valve healed in a wrong angle so entering the tube being up or sitting is impossible! I have to lay down which has changed my quality of life... It also meant that perhaps the valve was already slipping but they won t tell y. However it can stay like this for years and if y manage to enter the tube not laying down y could be ok.

I had to run to emergency a few weeks ago about the stenosis and hole too tight to enter a mini tube no joke...it was getting worst in last few month...so now I have a 24 fr in...no choice as me too I am worried. And there is hardly any possibility to talk to Dr...and when I think of a surgery I can faint I have zero strength and morale for this right now.

I have found it very difficult to have conversation with surgeon unfortunately. I guess when one as problem they don't like it so they sgut down...but I am the one left with the !ag in my hand...expression. And I feel very alone into looking for what am I gone do and take care of stone in pouch.. I don't know which Dr will be compassionate enough to look with a good heart my situation that I don't want a bag and help me with one problem at a time. Keeping my tube for a while is less stressing now for me too.

If ever y want to talk I can share my number. It is very hard for me as no one in my entourage understand except my family Dr...

Myriam....can they do a dilation? I went from a 24 Fr.......then to my 30 Fr. Waited for a scope to see what was wrong, and I was sent for a dilation. A dilation is nothing compared to a all out valve revision. When I was using the 24 Fr. I had to be on a non-fiber diet. Liquid and soft only, that was hard! I'm so sorry you are having trouble, but I would check into a dilation...I was told sometimes you have to go back for another one. It's just getting expensive for me to keep going back. But it is better to save what you have if it can be done, since my valve doesn't leak gas or output.


I'm just scared to take it out and see what happens. Overwhelmed with the possibility of not being able to get my catheter in.

BillV.....I would love to find someone to dilate me here. But I've tried to contact the UW Madison and no one returns my calls for a Kock Pouch, this was before the valve problem even. I don't know who does other kinds of pouches there, and I'm not sure what the x-ray was called for the dilation to be done. I know a Doctor did it at Mayo. UW Madison didn't even want to do a scope on me when I wasn't having any trouble so now I'm leary of them there.

Depending on where it is...is self dialation possible? Just throwing this out there but I was wondering if a sort of baloon dialiation for the valve or the valve opening wouldn't be rather simple to have done?
I don't have a k pouch team here...they just plain don't do them at all but I have a sympathetic radiologist and surgeon who were willing to learn with me and have done a lot of stuff that they could never imagine doing...we just kind of talk through the problem, make a few sketches and then work with the radiologist.
For my opacifications that Dr C from Toronto wanted done we dripped the 'opac' solution into the valve a drop at a time and visualised the valve with me sitting, standing, laying on either side and on my back...then injected it slowly into the pouch and did the same pictures that way.
It gives you a very detailed image of the twists and curves and narrowing of the valve and/or pouch...then they just need to put the baloon into the narrow zone and slowly inflate.
It really does not need to be a k pouch specialist to do it just a good radiologist with detailed instructions.
Sharon

Hi! Sharon I read your comment and now in regard to my issue as well, I am scared becausew I don't know if y saw this before the stoma that is usually out in my case has went inside the abdomer I don't seeit anymore since about 9 months after the surgery because of stenosis and necrosis I had I think. Anyhow, now I have a mini hole hardly the size of 24fr and I get tube in ( right now I keep it in...) But before my emergency, it seems there is 1-2 inc gap inside before I hit the valve and then 2 more nutch stage like to go though to get it in.

I wonder I never had dilatation but I am scared that this could make my valve more loose and even more incontinent...I also have more and more very liquid stool which bug me but also because of digestion I eat less fiber than I used to...I am still having to learn and try for diet.

I wished I could speech to some people live with k pouch on phone and compare stuff. If anyone would like to give me there no... I feel very lonely...I had no support group either.

Myriam,
It sounds like your valve has 'invaginated' meaning it has sunk inside the canal.
It happens and yes, I am sorry to say it happened to me in 1999 right after surgery on day 17 when they removed the sutures too soon and one side of the stoma slid inwards and caused a valve twist and then again in 2007 when the sutures let go completely...the whole thing sunk in about an inch which meant that the valve was no longer attached to the skin surface to keep the skin open...So it started to close up by shrinking and granulating in.
It was very, very painful and a stupid disaster because both my pouch and valve were healthy but no one could fix this. I had 3 separate surgeries to try to turn the skin under (like the hem of a sleeve) to stop it from shrinking. We did cortisone shots in the 4 sides every other week, a double Z plasty surgery and just about anything that we could think of. Nothing fixed it. We even burnt the skin with silver nitrate.
In the end they had to do a full, open surgery and move my stoma to a different site (where it is now...about 2 inches lower).
The only thing that you can do is to keep burning off all of the eventual granulation (those little bits of white that keep growing over the edges) and keep a stoma plug or tube in it at all times.
They may have to dialate the part of the of the stoma that is starting to shrink (stenosis) to help the tube to go in and out and prevent it from closing off.
If you PM me I will be happy to speak with you about it.
You are not alone
Sharon

Hi Sharon!

I really would like to talk with y. But I don't know how to go to privae message so I could libe y my phone or vis versa. Can y do it invite in some way so I could either call y or y call me at anytime. I guess we are about 5 or 6 hours apart. It is indeed Very hard for me. What y are now explaning was Never explained to me by any dr!! I feel like they don't care. I also will need to find alternate Dr I am affraid and need to know cost and risk now for me. My abdomen is very ruined since last surgery and my strength very unstable. I never went through such difficulties before and length of being weak and not well and feeling left out by the specialist! I really need to talk to someone... Thank you so much!!

Myriam,
Please contact the IBD center at Mount Sinai hospital in Toronto. They are specialists in this.
I do not know your situation (financial) but they practice out-of-province rates for Canadians and could help you. This is what they do best.
See about getting an appointment in Toronto for a consult and find out if they can take a look at your file first.
I would suggest sending it all (after calling first) to the office of Dr Zane Cohen. His secretary's name is Rina and she is very helpful.
He is semi-retired now so does not take on as many patients but is very understanding and helpful.
Tell them that Sharon (from Paris) sent you. They know me very, very well!
I will try to PM you myself and see how it works...I am not great at it so I make no promises that it will work!
Sharon