Hello all, I'll be 60 next month and live in SC. I had an emergency ileostomy 6 weeks ago. They removed 12 inches of my large intestine due to "dead gut syndrome". I have seen my ostomy nurse 4 times in the last week and a half...saw my doctor yesterday. He says that I have 6 more weeks before possibly being reconnected. Right now I'm waiting for a colonoscopy to see if all is well with the bowel that I have left.
I have tried Convatec and Hollister products. Evidently I have very sensitive skin. The 3M paper tape makes my skin very angry. The Convatec convex has durahesive and I was very allergic to it. When I saw the nurse yesterday I was healing slightly but she changed my wafer and I had to take it off today due to stinging and itching...my stool had leaked under the wafer I'm raw meat again. Does anyone have any suggestions? I am using the powder to seal the raw places and I have a spray skin prep that blessedly does not sting. I have been supplementing my diet with peanut and banana sandwiches and pretzels because they thicken my stool. Without them I have pure bile discharge and it eats it's way through the seal. My stoma is drooping and the stool drains right below onto the wafer instead of going into the bag. I made a "string" of stomahesive strips (rolled it between my hands like we used to make worms out of play dough) then made a circle and snugged it up under my stoma...nurse said that I had made an under-wire bra for it..LOL (only the ladies will get that one). That seems to give my stoma some "lift" to get the discharge farther away from the stoma.
I lost a lot of weight while in the hospital (and the couple of days that I was sick with diarrhea before being admitted) BUT I have gained it all back plus 15 pounds in the last 6 weeks and cannot wear any of my clothes. I know I will lose it after I get reconnected but that doesn't help me much now. I don't want to have to go out and buy a bunch of new clothes for the next 6 weeks. I have been living in sweat pants and shirts but it's getting hot now and I won't be able to do that anymore. Also, nothing to wear to church.
I have tried to keep a positive attitude but this is all beginning to get me down. I've had lupus since I was 12 but not diagnosed until my 40's. I also have sjogrens's syndrome, fibro, osteoarthritis (bum knees), asthma, migraines and non-hodgkins lymphoma (MALT). I had 4 tumors removed from my eye orbits this time last year and had a large tumor on my left temple area. I had chemo all last Spring. Seems like I just recover from one major thing and another hit me.
Sorry to be so long winded...guess I needed to vent.