I have had my ileostomy since 1991 when I was 19. I am now 42 and have started having open wounds develop on the skin immediately surrounding the stoma starting about a year ago. I have never had this occur in all these years. These wounds are not being caused by any excoriation issues, changes in skin care products, my hygiene routine, etc. or anything else I can possibly think of. I am a registered nurse and have very good hygiene and take excellent care of my stoma and use well-fitting appliances. I do know how to properly care for the wounds when they occur, and can get them to completely heal in about a week or so. The problem is they keep reoccurring. I have been to my GI specialist and my GI surgeon. Neither one of them has an explanation of why these spontaneous and painful wounds keep happening to me. The surgeon will not do anything about them unless they become infected, and so far that has not happened. This is just very frustrating and embarrassing because, as you can imagine, my appliance will start leaking at any given time because I cannot get an adequate seal of my appliance when the wound is present. All of my bloodwork has come back normal. However, I have not had any x-rays, scans, or MRI's done. Has anyone else ever experienced these kinds of issues or complications or have any suggestions or ideas on how to stop these wounds from repeating?
I have had some issues with an open wound -- I stumbled onto a solution that is working at the moment -- I cut the hole in the bag to just barely fit the stoma - not a speck bigger -- use the powder and skin barrier 2x then really heat the glue on the bag - when I put the hole over the stoma, I push the stoma in and firmly push the glue down around it -- apparently the acids etc were eating at the glue and then the skin - --I know this really cured the problem for me. If you find other solutions, I'd be interested too.
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Thanks for the welcome, guys. I have to admit this website does seem very friendly and helpful.
I will definitely log into chat as soon as I can and see who is around. Looking forward to meeting some like-minded people! :)
I presently have some excoriation with the mucosal tissue around the stoma. I am also in the healthcare profession. My hygiene is, as most, very good but problems still arise. I have that problem at present too. I have had CTs, MRIs, ultrasounds, labs....come to find out I have a parastomal hernia. I cannot lie flat, sitting is not the most comfortable...both because it causes the wafer to pull from the skin where the hernia is. Standing and laying down in a fetal position with pillows positioned around my ostomy are the most comfortable. My surgery is scheduled for Oct. 30th and crazy as it sounds, I am ready for it. My lifestyle at present is very sedentary and I don't take kindly to that! Normally I'm just a very physical person, I love life and no way do I feel 63! I can't wait to get back to my old self and I really do hope you find some solutions and dang it....get healthy again without having to worry about "Leo"!
The best to ya....
Learn about convexity and 4 myths surrounding it.
I would try seeing a dermatologist - sometimes they can figure out what is going on with the skin.
Another thought is to use Duoderm dressings under your flange.
Hope you find a solution.
Marisa
Most definitely see a dermatologist ASAP. I had a rare skin condition about 18 years ago often linked to digestive disorders called pyoderma gangrenosum - fortunately not around my stoma where it would have been even more painful and difficult to treat - but on my extremities. My surgeon and ostomy nurse had never seen anything like it, and referred me to the dermo lab, and the chief resident knew what it was right away. Google that condition and find some photos and see if it resembles what you have? It forms crater-like lesions where the skin appears to be burned or slightly eaten away. I cross my fingers this is not what you have, because it is extremely painful and requires heavy doses of the dreaded Prednisone to get rid of.
Words of Encouragement from Ostomy Advocates I Hollister
Hello....I had the same type of problem. I went to a few derma. doctors and couldn't get any help. Finally, I found a doctor out of Johns Hopkins here in Maryland. He put me on a drug called CellCept (sp?). The pain was like that of a 3rd degree burn. After about 2-3 months of the drugs, the pyoderma gangranosum cleared up and went away. Of course, it left me with one heck of a scar. I suggest searching for a good derma. doctor. Good luck.
Bonnie
I have had my ileostomy for 42 years. I have a hole beside my stoma. It gets in the way of my pouch on the skin. I have to change my pouch daily, also have a huge parastomal hernia. I think my sores are from Crohn's. Just a guess. I have not been to the doctor due to no insurance.
Does anyone have a home cure for excoriation?
Sores around my stoma persist because it is impossible to get a good seal. (Long story). I have used Domboro solution. Also Witch Hazel. I change the appliance as soon as I feel the leak start but the wound never heals. I can't get a good seal because of the excoriation, which causes more leakage and more excoriation. Blah. Blah. Blah. If you are reading this you know the drill.
My record is 17 bag changes in one day. Half of them occurred on a race boat. Never give up!
My first 6 months to a year, I got leaks almost any time I got up - but when my ostomy nurse finally gave me barriers with a convex wafer - and that, combined with a belt for a little added security - I only use about 50 or 60 1-piece pouches a year. Have you tried the moldable eaken seals Fioria? I've had probably every skin rash and condition there is over the past 18 years +, and when I had ones that caused unevenness in the skin around my stoma, causing problems with getting a seal - the eaken seals did wonders. Have you also tried barriers from different manufacturers? They all use different adhesives - and many people get skin reactions to a particular brand, so they have to try as many different companies as they can to find an appliance that doesn't cause any reactions to their skin.
May I ask what brand of eaken seals you use, Jim? I have problems with leaks as well.
Learn all about skin barrier extenders.
Hi Heidi, just putting my 2 cents worth in....can recommend Salts for a better seal. Otherwise, how about trying a two-piece unit from the likes of Hollister. Ask for a sample and see how it suits.
Wish you well on your recovery,
Colm
Hi Dandare, and thanks for the advice. I already use a Hollister two-piece, but I have not a clue as to what salts are? Can you please explain?
Thanks,
Heidi
Hi Heidi,
I think Dan was referring to Salt's healthcare, but I could be wrong. Here is a link to their site in case: http://www.salts.co.uk/
Check out the stoma seal. It works great, you can even ask for samples. http://www.costamedical.org/