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Reply to "Nuval valve"

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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