Stricturplasty on the Valve / Valve Replacem’t

dr kiran repaired a hernia on my valve, which is not stricturplasty surgery on the valve.  i can't speak to the latter surgery, but can say i have not had a problem since my 2016 surgery.  you are in good hands with the columbia surgical team.  

keep us posted please.  this is the first i have heard of the problem and--at your expense for which i am sorry--you can help educate us.  i hope all goes well.  jan

Dr. Kiran revised my valve and repaired a parastomal hernia  in 2019 and it is working fine.  It is a big surgery- same main line incision and the routine of leaving the catheter in for 3 weeks. I had forgotten what the post op recovery is like. Dr. Kiran is an extremely skilled pouch surgeon- definitely one of the top in the world. You are in good hands. It was all totally worth it to me - my pouch is 42 years old and i would do anything necessary to keep it!

Thank you both so much for replying! Always great to hear positive reviews of a surgeon, and I really appreciate your candor regarding valve issues. So happy to hear you’re both doing so well with your k-pouches! This latest partial obstruction has lasted almost 2 weeks-longest to date, and really wearing me down. I’ll see if I can consult w/ Dr. Kiran earlier. Thanks again for responding! I will repost with an update

Is your evacuation problem a matter of inserting the catheter?  I don't want to presume you have not figured out solutions.  If you are still seeking some, could you try a 28 FR?  A frozen catheter goes in easier, for some reason.  Also there is a product that maintains a catheter in the pouch and--i'm not describing this correctly but Kim can help out--does not require a leg bag.  Insurance doesn't pay for it....

Yes, explain your situation so you can get in earlier for an appointment.  Perhaps your local GI doc can help get in sooner.  I suggest it because mine has contacted other GI docs for me.

And thank you for replying, it is what makes us a family!  Be well, jan

Thanks Jan! So I’ve had both partial & total bowel obstructions before. In my current situation, I can get the catheter thru & must do so way too frequently becuz my system is working harder while experiencing horrible spasms. My stomach actually looks like tiny alien babies are in there kicking. Sorry for that lovely visual!! I was told the scar tissue on the valve is causing a stricture, but I suspect an additional kink higher up as well - I can feel it. If I stick to liquids, I’ll improve. But as soon as I eat solid food, I get the spasms.
Who makes a 28 fr catheter? And gosh, the product that keeps the cath in place w/o a leg bag sounds great!

https://bridgvilleplasticsinc.square.site

go to: NUVAL

I used the NuVal twice. It is sometimes used when the pouch valve has failed or when it is impossible to pass the catheter several times a day. The WOCN’s at Cleveland Clinic have them and some other pouch surgeons. It is a bridge to help until you can have surgery to repair the valve. It has to be placed by the surgeon and it is recommended to change the device every 3 months.- sometimes I stretched that to 4 months. I used one for over a year. My valve was leaking so much towards the end of that year and I was wearing an ostomy bag over top of the NuVal. If you are to a point that you can’t get the catheter in, you can tape the catheter in or use the belt/baby nipple method to keep the catheter in and cap off the end of the catheter. This is no ideal but doable. I’m happy to report that Dr. Kiran repaired my valve in 2019 and it has worked fine ever since. I don’t have experience with strictures.

Hi. Dr Milsom made a new valve for me bc my other one failed and my stoma retracted. He did my original K pouch 17 yrs ago. My new valve is working great! I think it even better than my first one! He is a great surgeon who really cares!

@Karmen posted:

Hi. Dr Milsom made a new valve for me bc my other one failed and my stoma retracted. He did my original K pouch 17 yrs ago. My new valve is working great! I think it even better than my first one! He is a great surgeon who really cares!

I am glad he is still working, the k -pouch surgeons are are becoming obsolete.

Hi All ~ Karmen, thanks for your response & I’m very happy to hear you’re doing well !
A quick update : I’m having surgery on the 16th ! Imagining showed a stricture/stenosis in the small bowel above the pouch. I’ve been on Dicyclomine which has honestly greatly reduced the horrible spasms, but Dr. Kiran will remove that area & do a bowel resection. He also will either remove the scar tissue on the valve, or create a new valve. I’m really hoping he can just “simply” deal with the scar tissue becuz I don’t have a huge issue inserting the cath & Im not leaking.
I also have annoying rectal pressure caused by a mysterious sinus tract wound that must be drained from time - time & past surgeons haven’t been able to find/remove it. I’m really hoping Dr. Kiran can deal w/ that once ‘n for all.
Thank you all for your time & thoughtful responses!! You have helped me feel confident in Dr. Kiran as well as all your continued good health. Gives me hope 💗

@AliBly posted:

Hi All ~ Karmen, thanks for your response & I’m very happy to hear you’re doing well !
A quick update : I’m having surgery on the 16th ! Imagining showed a stricture/stenosis in the small bowel above the pouch. I’ve been on Dicyclomine which has honestly greatly reduced the horrible spasms, but Dr. Kiran will remove that area & do a bowel resection. He also will either remove the scar tissue on the valve, or create a new valve. I’m really hoping he can just “simply” deal with the scar tissue becuz I don’t have a huge issue inserting the cath & Im not leaking.
I also have annoying rectal pressure caused by a mysterious sinus tract wound that must be drained from time - time & past surgeons haven’t been able to find/remove it. I’m really hoping Dr. Kiran can deal w/ that once ‘n for all.
Thank you all for your time & thoughtful responses!! You have helped me feel confident in Dr. Kiran as well as all your continued good health. Gives me hope 💗

Glad you have a good update and getting surgery!!! Let us know how it goes!!!

Dr Kiran did a k pouch on an acquaintance of mine last year. She is so happy! He is a great Dr. You have to go with the Dr your most comfortable with.
you will do great!

@Karmen posted:

Dr Kiran did a k pouch on an acquaintance of mine last year. She is so happy! He is a great Dr. You have to go with the Dr your most comfortable with.
you will do great!

What state is Dr. Kiran in??? Its hard to find K-pouch and BCIR surgeons

Dr Kiran is in NYC. He is affiliated with Cornell ny Prespyterian

@Karmen posted:

Dr Kiran is in NYC. He is affiliated with Cornell ny Prespyterian

Found him!! Thank-you!! I was scared no surgeon does that surgery anymore! Glad there are some that still do!

Dr. Kiran probably does the most continent pouch surgery in the U.S. Very talented and caring.  His practice, Columbia Surgery, is located in a building right next door to New York Presbyterian Hospital. I traveled to his office for a routine scope a couple of weeks ago. He repaired my valve and parastomal hernia in 2019 and I’m doing great.

@Kim S posted:

Dr. Kiran probably does the most continent pouch surgery in the U.S. Very talented and caring.  His practice, Columbia Surgery, is located in a building right next door to New York Presbyterian Hospital. I traveled to his office for a routine scope a couple of weeks ago. He repaired my valve and parastomal hernia in 2019 and I’m doing great.

I am so happy to hear that!!! For people that cannot have a j-pouch now have another option with a continent pouch!!! Praise GOD!!! I thought it was nearing impossible but I see its possible now!! Thank-you!!!