Hi

Any chance anyone has any info on the Nuval valve? I’m going to have one put in on Friday on a trial basis. I do have a Kpouch after 2 Jpouchs and have some issues.

Any info will be greatly appreciated!

Thank you, Jan

Original Post

HI Jan, 

How is it going? Did you get it done?

I had mine sent to me and placed by a stoma nurse in 2008...not the best results in my case, mostly because I had a peristomal hernia so it would not stay in. But if your problem is different you can live with it for years...I know of a few people that have kept the same one in place for over 2 yrs.

Good luck and keep us posted.

Sharon

Hi Sharon,

Thank you for checking. Things did not go well though, I only kept the NuVal in a week. After a day and a half it was leaking stool constantly and the pressure was so intense when I would go to empty it would just explode out!. I had to keep pushing it in and it was quite painful for me to sit up and even walk to the bathroom.

 I was nauseous and had diarrhea the entire time, quite unusual for me as I suffer from chronic constipation .

They just thought the gas build up was so intense it was pushing it out.??

it was tough putting in due to bad stenosis and I had to be put under for that. Guess it just didn’t like me. Following in the footsteps of some of my other body parts , darn em’🤬

I read one of your other posts and you are so right, just gotta know who and what we are and just have to find our good spot !

Last week reminded me that I can and have been much worse. Now tomorrow I am making a couple hour flight and I will be crazy nervous  about toilet access, but will tell myself to thank the Lord I am where I am and to feel Blessed .

You are a great help to us out here and Kim has been a great help to me I have deep gratitude for those who take the time to respond to others in need , we are are very special little group, do think those Drs know that also.

Janice

 

 

 

 

 

Oh Janice, 

I feel so bad, even though it did not work for me, I always kinda hope that it will work for others.

I am so sorry that you are back on the merry-go-round and that things have not improved...we have got to find a better way to fix things...too many complications, not enough solutions other than surgery.

At one point hubby was trying to figure something out but in the end, it just didn't work...and he gave up...we need an engineer to marry a pouch surgeon and have continent pouch device babies! 

If the NuVal kept shooting out, like mine did (and mine would pull the whole valve out with it) then it sounds like a peristomal hernia...if you keep getting hernias (and I harp on this constantly now! ) lookup EDS )Ehler's Danlos Syndrome)...it gave me answers to all of my questions and helped me to convince my surgeons that I needed a different type of suturing and a different protocol post-op.

They take wider bites of the tissue in surgery, wider margins if you like. They never use dissolving stitches or things fall apart. They keep sutures in up to 12 weeks (not recommended for normal mortals) and add staples and steri strips in the end. I even wear Montgomery Ties (a backward corset sort of thing that ties in front and holds things together on the outside and prevents my midline from pulling apart), they use mesh to support anything that needs patching or attaching...prevents my pouch from partially or totally falling off of the wall (I have lost count but it was 4 or 5xs)...40yrs ago Dr C used a Martex ring after it dropped twice...he sutured it with permanent sutures to the wall then the pouch to the ring...it held for 12 yrs that way.

The valve was the same problem...they used staples that just ripped right through my tissues...now they hand suture me and use staples. 

On a positive note, I make very few adhesions!

So look it up, the Mayo has a great site, and read up...it could save you a lot of hardship.

Hugs and yes, I worry about you

Sharon

 

 

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