Hey guys, I haven't logged in for awhile, so I have a few things I'd like to post about:

1. My pouch has been having issues for awhile. I find many times I get a wicked cramp and then I can't get the tube in. In April I went to the Emergency, and saw an x-ray where the valve was kinked, like an upsidedown U. I am talking about the piece of bowel that runs from my stoma to my pouch, and that intestine is between your fat and muscles, so how on earth can it kink when everything has been healed for months?! When this happens a bit of gas and poo will leak out, sometimes a lot will leak, and I think that has to do with the valve being pulled open by the kink. This doesn't happen to me all the time, and for the most part I seem to be continent. I was told by Dr. Cohen would need surgery, and so far I do not feel the problem was bad enough. Last year it was because when I went to see the radiologist about a kinked valve, my valve was ruined and it became completely incontinent, where I had to wear a bag all year. So far this hasn't happened to that degree.
My best friend read an article in a magazine about Fructose Malabsorption. When I read the symptoms I saw they include "Abdominal pain" due to muscle spasms. I can't see any reason as to why my valve can kink up like that unless the surrounding muscles were indeed in spasm. I found a website that talks all about food intolerance, and the more I read about things like gluten, fructose, lactose, yeast, etc, I think it is very worthwhile to keep a food diary if you are having problems with your pouch, among other health issues. I have been trying to do this and I do find that when I don't eat anything gross, my pouch it a-ok and doesn't kink or leak. My doctor has done a blood test for Celiac, but he has never made any suggestions about my diet aside from back when I had my j-pouch and was having a lot of diarrhea.
I also remember in my j-pouch having high waves of pressure, and I started losing continence because of that plus pouchitis. I have read Fructose Intolerance can also can pressure in the bowel, and I still feel this in my k-pouch, where things are calm, then suddenly it hurts and I need to drain it, but my valve kinks! If you are having problems please do yourself a favor that the doctor will not, and read up.

Here are some sites to read:
Fructose Malabsorption
Gluten Intolerance (you don't have to be diagnosed with Celiac to have issues digesting gluten btw)
Food Intolerance

This really resonates with me because that I have talked to a couple of people who had the exact same surgery by Dr. Cohen, who are not having issues, but myself and one other patient are? Go figure! I refuse to have more surgery, and I would rather deal with a dietary fix that go under the knife.

2. My stoma used to be about the size of a quarter, maybe a little bigger because it was an oval shape. In the past couple of months it has been shrinking. It's a little smaller than a dime now. I suppose that right after my surgery some of my skin came apart from the stoma and that took awhile to heal, but aside from that nothing weird has happened. I don't know if I am now having that problem Paul (RockyG) had where his skin was growing over the stoma? Or is it normal for it to eventually be small? I can still intubate though thankfully.

3. At times when my pouch has been leaking and my valve will not stop kinking, I have concocted this tube that I can leave in without wearing a leg bag or clamping it off, and I leave it in until I feel the valve has had time to straighten and heal.
a. Cut the tube short enough that it will be inside the pouch but not stick out very far beyond the stoma.
b. Sew about a piece of string in and out the right side, pull it around to the left side and sew it in and out, so that there is about 2.5 inches sticking out either side of the tube.
c. Plug it up with something sticky that will not dissolve too rapidly. I have tried Eakin seal (ostomy putty stuff) and gum, and I'm sure you could plug it up with silicone or something. (Just be mindful that it may give way when you are not paying attention.)
d. Insert the tube, and use your stoma dressing (I use Mestopore S) to hold the strings and tube in place. This has worked like a charm for me when my pouch has been acting up.

I hope you are all doing well! Love you guys.

Hey Tiffy,
So sorry that you are still having problems...my valve is kinked in an upside down V shape and it also can cramp and leak bits of stuff (usually the stuff that gets stuck in the valve...it leaks out about 1/2 hr later)...As for gas, only leaks when I have been having rough intubations...on my last opacification it was stable and hadn't pulled out any further...I can usually intubate normally but some times when I am overfull it takes time...Dr C also said that it needs to be fixed but he doesn't want to rush into it if it isn't urgent.
As for the diet, yup...I agree. I can usually control a lot of the problems if I eat right (but I don't!)
As for the shrinking stoma...if it is only the outside, you can still intubate and there is no pain (ripping, tearing, fissuring etc) then it is normal...I like to say that on good days my looks like a newborn baby's butt hole tiny, pink and almost closed....I lube and the tube goes in just fine...if it is stricturing or fissuring then you need to keep the tube in and use a corticoid cream.
I would love you to send me a picture of how you set up your tube...I would like to keep one prepared just in case.
Take good care of yourself and keep us informed of your progress.
Sharon

Hi Tiffany,
Great talking to you yesterday!! As my valve or outlet is also now kinked, you've definitely given me something to think about. If you do send Sharon a photo of the set up of your tube, could you please send me one as well as I would like to try it - it sounds a whole lot better than having a tube stuck out 1"-2"of me with an ileostomy bag on to give my valve a rest while I am having problems. Thanks!
- Dixie