Ulcerative Colitis Manifesting Externally Around Stoma?

Have looked through this site but haven't found out anything about the problem I had.



I got pinprick holes which got bigger and bigger until they made deep ulcers, around my stoma area.  The hospital said it was Ulcerative Colitis. They treated it (it's happened twice) with steroids and both times it has cleared up but it lasted for ages.



I have had an Ileostomy for just over four years. (Problem was U.Colitis.) I have had the stoma stapled twice and re-positioned to the other side as it was always disappearing.



I was told these ulcers are not caused by leaking or not keeping the area clean.



I don't understand because I thought U.C. was only a problem with the large bowel itself...totally internal...not something you got on the outside of your body.



The first time it happened the stoma nurse told me she had seen pictures of it in a book but whilst she had worked at the hospital I was the first patient with it. She took photographs.

I can't find anything on the web about this.



I'm definitely confused,

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anyone any answers?

Thanks in advance.

Hello.



I'm sorry to hear you are having problems with your skin.  Look into a condition called Pyoderma Gangrenosum.  Pyoderma Gangrenosum causes ulcers on the skin and is considered a systemic effect of Inflammatory Bowel Disease.  In ostomates, it is not uncommon for these PG ulcers to form around the peristomal skin.  They can bleed a lot, cause pain, are usually purplish in color,  and are problematic when trying to apply the ostomy pouch system.  



PG is very treatable.  The typical treatment involves a course of oral steroids.  I had difficulty recently with a PG ulcer near my stoma.  Because systemic steroids make me horribly depressed, I refused oral steroids.  My problem was treated by a steroid topical spray that I applied directly to the ulcer twice a day.  It took about 4 weeks to heal completely.  PG is notoriously stubborn to treat.  Look for a dermatologist or ostomy wound care nurse who is well versed in Inflammatory Bowel Disease complications.   Ostomy nurses, like all medical professionals, are not created equal.  Many who don't do a lot of research on IBD don't know all the complications that can occur!    Biopsies of the tissue inflamed may be done to confirm a PG diagnosis.  However, PG is often not confirmed on biopsy.  



UC, like Crohn's can cause problems throught the body.  Though you are considered "cured" by having the colon removed with UC, systemic problems like PG, arthritis, and eye problems are still possible.  I hope this was helpful.  Best wishes.

Hi Christopher...thank you so much for your long and informative reply.



I will indeed check out P.G.  I have a feeling a friend of mine with Crohn's has this problem on her legs. I didn't realize this was my problem too!



Understanding, for me, is a big part of dealing with a problem.



I will never take oral steroids again...the side effects were terrible. I remember I asked if there was a topical alternative and I was told no.



I now know if I speak to a different person I may just get a different answer!



Also interesting is that I am having an eye problem at the moment (maybe related?)



Thank you again for your help, have a good day



Regards Butterfly

Hi Butterfly:



You are very welcome.  Having the information is the first step in dealing with our illnesses!  I've found that in many cases, you have to do your own research as many medical professionals just don't know enough!  I hope that will change.



Sounds like your friend with Crohn's may have PG as well.  Along with appearing on the peristomal area, it often appears on the arms and legs.  



There are definately other treatments besides oral steroids.  Find a dermatologist if you can.  Topical steroids are definately available.  Other treatments, like Remicaide (which I can't take) are also used.  



Best of luck.  Let me know what you find out and how you treat it.



Chris

Hi Chris...you asked me a few weeks ago to let you know how I got on with this problem.



Well...as we said... knowing what the problem is certainly helps you on the way.



I had a lot of other health issues and I was spiraling down with little hope things would get better.



That is until a few weeks ago when I went on an acid/alkaline diet and wow! Because they found acid in my blood and organs/tissues my immune system was working against itself. Not a help with the ulcers on my tummy and the Fibro. M.E. Pre-cancerous oesophagus..list went on.



Within 36 hours my body started to react to the change of diet reducing the acid in my body.

I have lost weight so am now my correct weight, my skin is wonderful...not an ulcer in sight and my stoma has never worked better.



I feel like a different person...so much so I have even reduced the chemical medications I have taken for nearly ten years.



I feel like walking round with a big grin on my face. yes, I still have some pain but I can cope with that and I am convinced I am just going to get healthier and feel even better as the weeks go by. A healthy body means a better working stoma...great.



Wishing you good health too

Regards Butterfly

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Dear Butterfly:



I'm so very glad to hear that you are doing well.  I hope you have found the key to easing your health problems.  I hope you will be able to enjoy life now and feel much more secure about your life.  You certainly deserve the best of health, and I wish you nothing but that from here forward.



Chris