Seeking advice for ileostomy skin breakdowns and leaks

My first blog entry ever... I need advice. I have only had an ileostomy for a year. I have been battling skin
breakdowns and leaks. I have finally found a bag that doesn't leak - a Hollister precut extended wear with convexity. The peristomal skin around my stoma is always open and
breaks down. The pain with every bag change is intense. I have seen three different stoma nurses, all saying the same thing - keep trying. My routine is clean skin, nystatin and stoma powder, skin prep, and an adapt ring on my wafer. I am also battling high output - 2000-3000cc daily, even with meds and diet control. My bags only last 24 hours at the longest. I'm so frustrated and tired of the pain...

Hi Lulurn, I have had my ileostomy for less than 1 year and the year has been an education for me. I did not know anyone with an ostomy prior to surgery. My stoma nurse suggested that I clean everything with plain water and dry. Then use ostomy powder, crust it with skin prep, let it dry, and redo the routine 2 to 3 times. From there, I stick on the wafer. So far, so good. My output was a lot in the beginning too, but has decreased. I watch what I eat. If I drink wine, I have high output especially red wine. If I eat salads or lots of vegetables, I have high output. I balance my meals with bread, potatoes, and/or rice. It seems to help some. Several people have suggested bananas but I do not like them. Quick question...do you use a one-piece or a two-piece system? I use a two-piece and check my wafer and stoma in the morning just to make sure things look ok. I clean things up and redust with stoma powder and snap on my pouch. It helps me. I am also on a 3-day change schedule...whether I need to or not. Take care and keep posting. Everyone has great ideas and good ways to care for their ostomy.

Thanks Ladyhope. I am very careful about what I eat. I eat little to no veggies! I have been taking several different meds to help with output, but gave up since they didn't help. To answer your question, I use a one-piece. I have not found a two-piece that didn't leak. I currently use a one-piece Hollister. If I don't change my bag every 24 hours, the peristomal skin breaks down and bleeds terribly. Especially after working 12 hours, I'm in so much pain. Some days from the peristomal skin breakdown... So frustrated.

Hi lulurn, I guess it goes without saying we all react differently to stoma products, having said that,when I first got my ileostomy over ten years ago I had a lot of problems and called Hollister for advice and one of the first things I was told was to NEVER use skin prep with their products and I quit using it and made a rapid recovery around my stoma by just using adhesive remover, then wash the area with Ivory soap and dry carefully with paper towel and use a small amount of powder and removing any excess then it was ready for the flange. It only took about two weeks for my skin to clear up and I've never had any more problems, but I still remember the sting from using that skin prep. It wouldn't hurt to give Hollister a call, toll free and discuss with them some of your problems, I found them really helpful, wishing you the best of luck, Ed

I too had a rash all over my abdomen, which caused constant leakage. At my primary doctor's suggestion, I went to a dermatologist and had a biopsy. The rash was psoriasis. I had 16 ultra light treatments and have been completely healed for 5 months. Dotsy

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hi Lulurn

I too am having the same problems as you are after almost a year. I have tried everything I can think of, but still, I have high output and Sally's stoma is constantly on the go, so I have terrible soreness and bleeding around Sally. It is very painful. If you find an answer, please let me know, will you, as it is driving me mad.

Ouch! I, like many, know what a pain this can be when your skin hurts. I hope you can find time to just sit or lay around for a few hours and give your skin some air time which helps. But I have heard of a product from Hollister called Karaya powder. I know someone from another forum who swears by it. The series number for Hollister is 7905 but I am going to try to attach the link. Strangely enough, I have heard that putting Mylanta on the skin helps also.

I hope here is the link: http://www.hollister.com/us/products/product_series.asp?id=1&family=1&series=89

Hello, this is my first time of writing on MAO but felt I may be able to help somewhat.
I've had my colostomy stoma for 3 years now and at first had great problems with skin rash and soreness. I tried calamine lotion, powders, gels, etc. but they did nothing for the itch or the rash. I now find that a very small blob of Instilagel applied to the skin/rash helped to clear the rash. A rule of thumb is; if it feels greasy, you've used too much. It also has a numbing effect. I also changed pouches and systems a lot in that first 6 months of itching skin, etc.
I eventually found Hollister 22125 single-use pouches work for me. I use Salts Peri-Prep wipes before applying the wafer and Appeel medical adhesive remover when needed. This gives my skin time in the air after a shower and between changes. As my stoma nurse is always saying, "least is best" with regard to creams, powders, and other products.
It could just be that you are intolerant to the wafer glue as I was. So using the 2-piece system where the wafer is on the skin for up to and beyond 4 days is a big no-no for me. It could be the same for you? Just a thought.
Most info I get is from C3Life.com, a really good site for info on a variety of issues with stoma nurses to ask questions of.
Good luck to you all from
Independent Annie