Need help with periostomy rawness

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Sherry C
New Member

Date Joined Apr 2006
Total Posts : 3
   Posted 3/23/2007 1:41 PM (GMT -7)   
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 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.
Miz Kitty

Veteran Member

Date Joined Dec 2006
Total Posts : 1986
   Posted 3/23/2007 7:50 PM (GMT -7)   
Miz Kitty,

Have you tried Eakin Seals? They are used around the stoma instead of the paste. They come in 2 sizes and mold very well around your stoma, and are a little thick so may help at the bottom, they also hold up much better than paste. They help keep a better seal around the stoma.

Also, do you use a skin barrier under your appliance? I like the 3M no sting which really makes a difference especially if you're raw under there. Smith and Nephew also makes one.

I also have a problem stoma, it actually is convex, is lower than my abdomen. I use the Durahesives, and have no problems with them as long as I use the skin barrier and I have to change it every day. If you can't use the Convatec, there are plenty of other companies that make them. Go to the different web sites and order some samples.

Good luck
25+years diagnosed with CD.  5 resections, permanent colostomy (which I'm glad I have, I can actually leave the house)   Have tried just about all the drugs out there.  Now fighting arthritis.

New Member

Date Joined Mar 2005
Total Posts : 19
   Posted 3/27/2007 7:19 AM (GMT -7)   
hi hon, sorry to hear of your problems and hope the six weeks passes quickly for you. might be worth buying just one nice skirt loose waist or wrap round that you can wear to church or with nice T shirts. i too had peristomal probs and tried a product called cavilon in UK which is product on a sponge on a stick which didn't help then someone told me about a special powder called Orahesive protective powder from convatec which is FABULAOUS. dried out the area really well. you have to make sure the hole on the stoma bag is not too small or too big and i found using a mirror and measuring card the best way with lots of wrong attempts in between.
good luck
chip girl x
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