Open Skin Wounds Developing Around Ileostomy Stoma

Posted by txgal914, on Sat Oct 19, 2013 10:39 pm

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 exellent 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 re-occuring. I have been to my GI specialist and my GI surgeon. Neither one of them have 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 kind of issues or complications or have any suggestions or ideas on how to stop these wounds from repeating?

Reply by Ewesful, on Mon Oct 21, 2013 6:44 pm

I have had some issues with 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.

Reply by skidder, on Mon Oct 21, 2013 9:17 pm

Hello Txgal, Skidder here.
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 CT's, MRI's, 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....

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Reply by marisa.s, on Tue Oct 22, 2013 8:47 am

I would try seeing a dermatologist - sometimes they can figure out what is going on with the skin.

Another thought is to use duaderm dressings under your flange.

Hope you find a solution.

Marisa

Reply by Juuust_Jim, on Wed Oct 23, 2013 3:16 am

most definitely see a Dermatologist ASAP. I had a rare skin condition about 18 yrs 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 photo 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.

Reply by Past Member, on Sat Oct 26, 2013 12:43 pm

Ewesful wrote:

Reply by seasport, on Wed Oct 30, 2013 5:19 pm

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 on heck of a scar. I suggest searching for a good derma. doctor. Good Luck

Bonnie

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Reply by Pooter, on Mon Jan 20, 2014 8:45 pm

I have had my Ileostomy for 42 yrs. I have a hole beside my stoma. It gets in the way of my pouch on skin. I have to change my pouch daily, also have a huge parastoma hernia. I think my sores are from Crohns. Just a guess. Have not been to Dr. due to no insurance.

Reply by Past Member, on Wed Dec 10, 2014 12:32 am

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!

Reply by Juuust_Jim, on Thu Feb 12, 2015 8:09 am

my first 6 months to a yr i got leaks almost any times 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 onlt use about 50 or 60 1-piece pouches a year. have you tried the moldable eaken seals Fioria? ive had probably ever skin rash and condition this is over the past 18 yrs + and when i had ones that caused uneveness in the skip around my stoma causing probelms with getting a seal - the eaken seals did wonders. have you also tried barriers from different manufactures? they all use differnt adheasives - 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 doesnt cause any reactions to their skin

Reply by Heidi92, on Thu Feb 12, 2015 10:32 am

May I ask what brand of eaken seals you use Jim? I have problems with leaks as well.

Reply by dandare, on Thu Feb 12, 2015 7:30 pm

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

Reply by Heidi92, on Fri Feb 13, 2015 8:19 am

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

Reply by Mrs.A, on Sat Feb 14, 2015 12:07 am

Hi Heidi,

I think Dan was refering 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/

Open skin wounds developing around ileostomy stoma

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