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Nov 28, 2016

Life with Pyoderma Gangrenosum and Ulcerative Colitis

This topic revolves around a person who has been dealing with a recurring blistering rash after undergoing several medical procedures related to ulcerative colitis. They are exploring whether this skin issue might be linked to an autoimmune condition.

Here's a bit of background and some advice shared by others:

- The individual was diagnosed with ulcerative colitis in 1996 and had their colon removed. They lived with a J-pouch for 10 years until it failed in 2012, leading to a permanent ileostomy. Since then, they have faced chronic diarrhea and frequent hospitalizations for dehydration.

- In June, they experienced a series of bladder infections, which led to a proctectomy. During this surgery, a large abscess was discovered and drained. Following the procedure, they developed a painful rash with blisters, and doctors are still trying to determine the cause.

- Initially, Pyoderma Gangrenosum was suspected, but it was ruled out. The skin lesions have been confirmed as autoimmune-related, and the person is starting treatment with Remicade (infliximab) infusions every 8 weeks, along with steroids and dapsone.

Here are some insights and advice from others who have shared similar experiences:

1. Consider the possibility of Pyoderma Gangrenosum (PG), which is often linked to ulcerative colitis and Crohn’s disease. It is sometimes described as "ulcerative colitis on the skin."

2. For managing PG-type lesions:
- Keep the lesions clean and protected, as they heal very slowly from the inside out.
- Remove scabs carefully to prevent re-infection.
- Minimize friction from clothing, as even small irritations can worsen the sores.

3. Some topical products that have helped others include:
- Compound Tincture of Benzoin applied directly to irritated skin.
- Tegaderm transparent dressings to protect the area.
- Protopic (tacrolimus) ointment for stubborn, non-healing ulcers, though it may affect the adhesion of ostomy appliances.

4. In some cases, hospital intervention like cauterization of bleeding ulcers has been necessary when they opened under the stoma appliance.

5. For visual comparison, it might be helpful to look up images of Pyoderma Gangrenosum online to see if they resemble the current rash.
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