Life with Pyoderma Gangrenosum and Ulcerative Colitis

In 1996, I was diagnosed with ulcerative colitis. I had my colon removed and got an ileal reservoir that lasted 10 years. In 2012, my reservoir failed, causing me a lot of problems. I got a permanent ostomy and have suffered from chronic diarrhea and many hospital stays due to dangerous dehydration.

In June, I was having bladder infections one right after another. I was in a lot of pain, so a proctectomy was scheduled and an abscess the size of a baseball was discovered and drained.

I have been in the hospital now for two weeks because I broke out in this terrible rash with blisters, and the doctors have been trying to figure it all out.

Has anyone heard of this? 'Cause ulcerative colitis seems like it might fit this diagnosis.

Anyone heard of this?

Thanks

It could be Pyoderma Gangrenosum. They say it is caused from Crohn's. I had the same sores and still get them. My doctor said that it was not P/G. I did not believe them so I just started putting my usual Compound Tincture of Benzoin on my skin for irritation and also Tegaderm. It has helped, but it comes and goes.

Marvin

Hi EJBetty & Marvin, I've had my ileostomy for 50+ years, and never really had a rash or sore issue, until about 15 years ago. I had what appeared to be a white blister (that hurt) under my stoma. My doctor wanted me to see a surgeon, but I freaked out and ignored him. A few years later, I emptied my pouch to find it filled with blood. I took an emergency ride to the hospital (in NYC) recommended by one of my doctors, and they cauterized the wound....as well as another open sore. Both of them refused to heal. I saw the surgeon a week later, and he told me (for the first time) that it was Pyoderma Gangrenosum....literally Ulcerative colitis on the skin. UC is a systemic autoimmune disease and looks for places to erupt. I've always had difficulty healing (since being treated with steroids as a kid) but this gave new meaning to "not healing". Each lesion (over time I had about 4) took months to heal. They have to heal from the inside out....so scabs that form over, too soon, need to be removed, or the site gets reinfected. I had one from clothes irritating an old scar. That spot became the size of a dime...and went deep. Another was on my hip, also clothes irritation....but the worst one (actually two) were under my faceplate. We found a good salve (Protopic) but it made it difficult to keep the flange on. Since then, I've been very careful with my skin.....and treat slight blemishes immediately. I hope this helps. You can google Pyoderma...and get some really good pics, to see if they match. Best of luck

Marsha

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Does it look like this?

It is not Kyocera. That's what I thought, but it has been ruled out. Thanks for responding to my email.

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Pyoderma is what I meant! Darn auto type!

I'm so sorry about what you've been through. I was worried that the breakout would go to my stoma but it did not. It is not pyoderma. It is definitely autoimmune and could be the ulcerative colitis. I responded to Remicade so my rheumatologist has decided to do infusions every 8 weeks. I am also on steroids and dapsone.

Thanks for emailing me. Hopefully I am on the mend.