i dont know what to do...this damn ileostomy is going to be the end of me! no matter what i do, i cant get more than 1 day out of it, AND the last couple days it burns so bad i actually started crying in public! and im pretty tough!!...i found i cant go without paste or powder...maybe i need to switch to keraya?? my skin is so raw it bleeds and hurts so bad. i dont know what else to do...im having trouble getting suplies i need too! im about to have a nervous breakdown.

Sorry you are having so much trouble. What have you tried for supplies so far? Have you been taking Imodium at all, or anything to help slow/thicken your output? That can help.

I'll PM you my phone number and you can call me if you want to talk through some of what you've been doing...

if i eat anything to make it thicker, it hurts even worse coming out!! i think i have tried just about everything, but i dont think i have found the right combination yet. my husband is furious with me for not trying harder to get help with this. it's just that my surgeon knows jack about ileostomy skin care, and my last home care nurse seemed to know a lot, but she couldnt fix it either! so, im requesting a bunch of samples from hollister to try some new combinations...i just hope if i find something that works, my insurance will cover it!! i have horrible insurance.

I suggest changing to a different brand of wafer/pouch. I found the only one that works for me is convatec. Hospitals don't give a product because they particularly believe in it, but because that is the manufacturer that gives them free samples. So, don't just go with one company. Request samples from everyone. If your supply company doesn't do samples, call the companies directly.

Also, Convatec has ostomy nurses on staff who will talk with you and I bet the otehr manufacturers do too. Call and pick their brains.

Both of my surgeries It took about 6 weeks for the stitches to go away and the skin connecting the stoma to heal. I struggled during that 6 week period both times. I would highly recommend using a eakin seal. The Wound nurse that helped me said it will give you a good seal and help your skin to heal.

I would suggest this..

Powder on the weeping skin, then Skin barrier wipes to lightly dab on the powder, then powder again, then dab - this makes a crust over the weeping skin. then put on eakin seal so it "hugs" the stoma, then the wafer(I use coloplast). Then I place my fingers on the inner wafer/eakin seal area without pressure for 30 seconds, to heat it up. Then take a wet wash cloth, heat it in microwave for 10-15 seconds, put in a plastic bag (I use freezer bags) put it over your wafer for 5-10 minutes. The heat makes everything bond better.

And be patient. It seemed after the stitches disappeared things got much better.

Hang in there.

I am so sorry you are having problems and I pray you find relief soon. I am experiencing the same with my bottom. Had surgery in 1985 with excessive amounts of stools but never had skin problems until 1996. I had been told by several surgeons maybe I need to go back to illeostomy so my bottom wouldn't stay in a mess. I tried to tell them no my side would be that way. They tried telling me that it had been improved since my surgery. I didn't go for it and to see your post proves it. Different area but I know what you are experiencing. I am also pretty tough but this has gotten me to the end of the rope. I survived UC,J-pouch surgeries bowel obstruction,pouch prolapse surgery, h-pylori but this is really getting me. I will be praying for you!!!!

Sarahtigri,

You want to know what's going on, right? Well, you may have to do your own detective work because sometimes the local ostomy nurses just don't know. I had a rough time the first year of my permanent ileosomy with an ulcer on the skin next to the stoma. It was very red, oozy, and painful. I kept leaking; my wafer didn't last very long. I thought all the things you're thinking now: it must be my wafer product, must be something I'm doing wrong to apply it, probably need more paste, etc. I had developed an ulcer next to my stoma and no matter what I did, I couldn't get the skin in that area to stop oozing and to heal up. I went to the local hospital stoma clinic twice and the stoma nurse tried to help but to no avail. Don't give up! I finally made an appointment with my surgeon at the Weston, FL Cleveland Clinic (two hours away) and the moment the ostomy nurse and surgeon saw the area, they both said "peristomal pyderma gengrenosum". They knew how to treat it using topical Tacrolimus 0.1% ointment. I use a tiny bit mixed with orabase paste (found over the counter) and applied a small amount using a tongue depressor. Then I applied a Kendall Telfa non-adherent dressing on top of the wound area. Within a few weeks the ulcer had filled in with new skin, but because I had waited so long to get this help I now have a pink scar next to the stoma. It's healed up nicely, though, and I have no more pain and can now get five to six days from an appliance change. I love my ileostomy and have had great success once I was able to figure out what my problem was.

All I'm suggesting is that it may be more than just a problem with an appliance product. I have since had one more episode of pyoderma gengrenosum (a small one), but now I have the medicine to "nip it in the bud". Even if you still believe it's a allergy to the products you're using, maybe you can purchase some of the non-adherent dressings I spoke about above and cut a small piece to place over the oozing area and then apply the pasted wafer on top. The dressing draws the oozing on to itself, and maybe you'll have more time with the wafer and then the skin can heal up.

I hope you find relief soon.

Caty

This message has been edited. Last edited by: Caty,

wow. those are some good ideas! i like the hot washcloth idea! i am going to call the surgeon tomorrow and get the hospital ostomy nurse #. maybe try to get in to see him too. i will call my supplier to get some eakin seals (do they make convex, or just stack them?)...i went to hollister to ask for some free samples, but havent heard from them yet. they usually call me before they just send stuff out. i also havent been using skin prep wipes. i bought some today, the no sting kind. so i can use the powder more effectively! thanks everybody for your suggestions and support!!!

Did you try the eakin seals with any success ?

oh yes, i did....made things worse. but, on the bright side, somehow my skin is looking better. there was about a 3/8" ring around my stoma that was completely raw, now it is only about 1/8"!! not burning as much either. not sure why it is getting better. also, i had a wonderful conversation with a very helpful girl from the supply company...it looks like i will be able to get 30 bags a month AND they can send me a 90 day supply!! this would be more than enough to last until my surgery!!! assuming i pass my pouch-o-gram!! i would like to say thanks to everybody who has given me advice, and especially those who have given me extra supplies!! you guys are great!!