Getting my valve fixed.......

Lois: I also had the wonderful Dr. Bearhs work on me.He did excellent work and I am sure will provide your new surgeon with a great starting point. I am sure your procedure will go very well and look forward to your update.

I wish you the very best!

a third Dr. Beahrs patient here! mine lasted 25 years..
another group of surgeons would be excellent.

Do you like the Tpouch and who performed the surgery?

I have a K-pouch. Since 1976. Had one repair about 12-15 years ago. I get a small leak if I go too long between intubations. Like 9 - 12 hours.
If I intubate every 6 - 7 hours I am usually just fine. Plus tube goes in fine.
I have been interested in the T pouch but seems like it's done only in the L.A. area. If anyone knows how the T - valve works, please let me know. Thanks.

I won't be operated on until June. So as soon as I'm able I will let you know.

Don't forget be an Advocate for the Kock Pouch, as this is a wonderful operation and needed. I personally am very allergic to adhesive. So the Brooke Ileostomy is out, I don't have a rectum so the J-pouch is out. My only choice is the Kock Pouch. Please be an Advocate to keep this surgery going all over as a lot of surgeons are retiring. We want to make sure the younger surgeons learn this procedure all over! Thank You!

Lois: how long do they expect you to be in the hospital and total rehab time? I have a feeling I will need to get my valve redone before I get too old.

Thanks

I have had my valve fixed 4xs over the last 10yrs (had it moved 3xs too)...for each surgery they kept me in the hospital for 7 days and I had about 6 weeks convalecence at home.
During the 6 weeks I learned the hard way to NOT push, pull, lift, climb, carry or do anything that could put stress or strain on my abs of the pouch...I say the hard way because after the first fix I had the bright Idea that I needed to get in shape and tighten those abs....Really, Really BAD idea.
You need to give your body the time to heal and that is no joke.
I really overdid it and ended up have 3 redo's because of it so plan to take your time and heal.
Sharon

I have no idea how long I'll be in the hospital. I haven't seen the surgeon yet. I'll find out more then.

Sharon, I will be very careful the length of time they tell me. I'm expecting to be told 6 weeks no lifting, or anything.

Having this catheter in so far, is very convenient, I can't eat everything I want to but I don't have to worry about putting the catheter in. So I am getting used to this.

Jasmine,
I know that we can just about get used to anything...I just don't want to.
Yes, it is kind of easy once you get the hang of it...it is just not a healthy situation.
My only advice is to try to get it done as soon as possible and to take it reallllllly easy once it is done...you don't want to have to redo the redo!
Be good, pamper yourself within your limits and pray for the best. My advice.
Hugs
Sharon

My appointment has been set back. So I'll have a scope first to see what is up. They are thinking an angle of the valve is the problem. So I will go from there.

I still have the catheter inserted in me totally and I am doing fine with it this way. I just can't eat fruit or vegetables which I miss. I'm trying to build myself back up since I almost died March 20. I will keep you posted after it's over. If I should need surgery, probably 1 week in the hospital for a valve fix.

Jasmine,
Sorry that the app is being pushed back...hope that they get to you soon.
If you miss your fruits and veggies you can mix or purée them in a blender or hand held blender...that is what I do and did when I had the indwelling tube.
I also did it for salads (my favorite salad was chopped tomatoes, cucumber, spring onion and avocado with cilantro), I would serve the family and then take my portion and blend it to a cold soup...yummy.
They ended up wanting mine!
I am drinking my banana as we speak (smoothie).
So do not get frustrated...Get a blender!
Sharon
ps...it will all be over soon. Hugs

I had a stricture and 90 degree turn in the valve. I had biopsies and a valve dilation. Biopsies came back no bacteria, no carcinoma....woohoo! So I wear my catheter for 4 weeks, then take it out and go to every 2 hours to empty week 5, wear catheter nights; go to every 3 hours to empty week 6, wear catheter capped off nights....etc. until I work up to week 9 at every 6 hours then no wearing the catheter nights anymore. If I have any trouble during this emptying schedule, I need to call the Mayo Clinic ET nurse, and see what she wants me to do....probably go to less hours in between or start over again, or maybe another dilation or even valve revision. Valve revision is last resort. Ok with me.

Hi,
I'm new here and glad to find this discussion. I had the KP surgery about 33 or so years ago (I actually forgot the exact year). Over the years I have had several surgeries to dilate the opening, which just keeps insisting on shrinking. My surgery was done in L.A. by Dr. Sung who is incredible, but sadly has just retired. He did say that he had tried over the years to find people to train on KPs, but has found little interest in that. At the end of April I was just relaxing on the sofa when all of a sudden I leaked, and leaked big time. Three days later I met with my surgeon who skoped me and said he had found a fistula. At the end of May I was hospitalized for dehydration and the hospital managed to take a manageable situation and make it substantially worse--I left 10 lbs lighter, with a terrible rash and just very sick. I have figured out how to control the leakage just like others have state, massive emptying twice a day and ensuring that I let the gas out as soon as I feel it. I have not had a substantial leakage in a while. My biggest issue is the stoma, or the opening to it, as it really needs attention but I can't find anyone willing to do it, stating lack of knowledge as the most frequent reason. Oh, did I forget to say that I have Crohn's Disease? At the time of my initial surgery the doctors were certain that I had UC and what a surprise when about a year later I began bleeding again and they said, oops. Not their fault as it's hard to tell at times until after a misdiagnosis has been made. I'm very happy I had the KP surgery no matter what, as the overall quality of my life just improved, until now when it's most painful around the stoma all the time. Any leads, thoughts, shared experiences would be most appreciated. BTW, the doctor in Culver City won't operate on me unless he can do a conventional ostomy. Thanks and nice being here.

Batel, look at the Master Doctors List for Kock Pouch/BCIR....there are doctors in CA that do the Kock Pouch. I hope you find one and do well.

Hi! I just read your post and I am going through similar situation and its making me very distress. I had very few advise on what to do to minimize stenosis of valve and skin stricture...but now by myself after an episode to mergency room I realised I should have perhaps kept my tube in at some more often with outside bag to relax my intestine...when I eat and all. And kkeep it in when I sleep m...once in a while...I was not told what to do to prevent more stenosis just wait...

And I read in journal and article that dilating could make the valve incontinent ?!! So I am affraid to do it...plus could create infection... So I also need support.

I am thinking that we must UNite to force the medical board in Canada (make a petition) so we have Dr performing these surgery!! Or that they pay for us to to in USA...but even there its getting more difficult to find a Dr...

I wonder why?

Perhaps the medical companies make too much good money selling bags and stuff...while K-pouch reduce this need... But as the revidion challenge...which I think is often caused by LACK of preventative measure and training the patient on food, diet, timing to intubate etc etc...and not lifting stuff...for a Long time depending about 1.5 years...time to heal.. So which Dr will care and start training a bunch of Dr and nurse to help patient lkeep a quality of life.

To me when tgey try to sell me a bag...it does not eork I am not 80 years old...and thinking I would have stool outside on me on a daily basis if very hard to accept for me...altough as for Other I can unbderstand in sonme situation etc...

Anyhow, the Dilatation techniv and risk...I would like to know more about it...even a Z type of cut at skin let to open up the hole...

Dr Cohen was at least brave enough to push the barrier and deal with many case in the past. But me I had a bad case of complication, not easy for me. I still hope to salvage my k pouch now (but I was told last one was the last one probably)...so I'm Scared. Now anyone with tips on how to remove pressure on valve or if they tried keeping tube in if it made a good difference with stenosis and if it did or not create more incontinence etc...

Any tip would be helpful.

Thank you. I can share my email etc for discussion.

My stricture was in about 6 inches almost to the valve end inside my pouch. Since I had my valve dilated, I feel the catheter needs to be left in so it can heal so the catheter will pass through. My valve is still continent since the dilation with the catheter left in. My worries are that my valve is so long, I'm afraid it will bend easily in the future. Time will tell. I had the dilation done by a doctor at Mayo Clinic. He said I may have to come back and have it done again. During the dilation it was really bleeding as I was watching on the monitor, so I figure it will scar some when it heals. September 3, I take it out and empty every 2 hours and I will put the leg bag on at night. If all goes well during that week of every 2 hours of emptying, then I will add an hour in between emptying the next week and wear leg bag at night. And so on until I hit every 6 hours....any trouble during my 9 week healing of the valve and Mayo Clinic may set me back on hours to empty or more intervention of some type. During this time I will be eating very carefully, I don't want to irritate the valve more than the emptying schedule. So nothing to clog the catheter holes for the 9 weeks of scheduled intubation. Putting the catheter in and out to be cleaning out the clogs would be irritating during this time. So I am avoiding fiber and foods that don't digest completely.

Batel,

I met with Dr. Cindy Kin at Stanford earlier this year to have her look at my Koch pouch because I was suddenly having problems intubating (1st KP 36 years ago at UCLA with Dr. DenBesten, then yearly revisions – last being 33 years ago). Dr. Cindy Kin came from the Cleveland Clinic and learned about Koch pouches there. I don’t know how many, if any, of the operations she performed herself while there, but now at Stanford, she is their new KP surgeon (their older expert KP surgeon has retired – can’t remember his name). I don’t know if your Crohn's would affect her decision to save your KP or not, but she might be someone to consult with in northern California.

Good luck to you and keep us posted.

Debbie

Thank you so very much for the lead. I feel like a yo-yo being bounced between doctors and surgeons while I'm in great discomfort and pain. I will see what my gastro says about this since she comes from Stanford. It can't hurt and it's a short drive from San Francisco, so it's certainly worth the try. Anything at this point is worth the try. Thanks again and I'll keep you posted.