Recent ostomy recipient (4/27/17) due to Ulcerative Colitis and by July I noticed a tiny dot of irritation 2.5" from my stoma. When I returned from my eclipse roadtrip on August 22nd it had blistered
open. It quickly
opened wider and the ostomy nurse guessed it was PPG from the purple wound edges. The pain was getting ugly by then and the ulcer was 1.5cm by 1.6cm. Cellulitis set in and I got to spend 3 days in the hospital at the end of August to treat it with IV antibiotics. Even with 40mg of Prednisone and Clobetasol the wound kept growing. Derma took two punch biopsies, sewed them up, shot the ulcer full of steroids and we waited for an official PPG diagnosis. Other PPG sufferers warned me that it was not to be taken lightly so I asked for aggressive treatment. I had already been told twice that they thought my PPG was under control but the wound kept growing. At this point I had to change my bag and wound dressing daily because the ulcer output overloaded the bandage and pushed the wafer off my stoma. At this point my ulcer was circular, easily 3cm across and just 1.5cm from my stoma.
Fortunately I had some Bupropion left over from an attempt to get my UC under control and I knew that TNF Alpha inhibitors could help PPG. I started my dose at 100mg/day, then 200mg and on the third day I hit 300mg. I immediately noticed a major decrease in my ulcer pain. Previously spraying Clobetasol on the ulcer would cause 8/10 pain but after taking Bupropion it decreased to 3/10. After just four days my wound not only stabilized but my Derma doc saw a tiny sliver of new skin at the edge of the ulcer. I told him about
my Bupropion therapy and he agreed it was probably helping. Just to be on the safe side he started me on 50mg/day of Dapsone. The biopsy sites soon showed signs of infection so I started taking Wild Oil of Oregano drops to fight it. I also used a Reuteri probiotic afterward and almost immediately my stoma output became textbook applesauce consistency. I suspect this may have been due to the Oregano/Reuteri combination suppressing a possible Mycobacteria Avium Paratuberculosis infection - MAP may be associated with PPG. My father had Crohns so I may have MAP issues as well. There are studies showing a possible link between Crohns, MAP and Pyoderma Gangrenosum -
Treatment of Refractory Crohn's Disease and Pyoderma Gangrenosum with a Combination Regimen of Rifaximin, Gentamicin and MetronidazoleJust two weeks later my ulcer had skinned over 25% of its surface! When I messaged my doctor the good news he replied "It sounds like you're having a remarkable improvement from your current treatment combination. You are responding better than the average person. Keep up the GREAT work!" This weekend my wound output had decreased enough that I can now go 48 hours between changes.
Has anyone else with Peristomal Pyoderma Gangrenosum ever tried Bupropion to reduce neuropathic pain and inhibit TNF Alpha? I was taking a shot in the dark when I tried it but it seems to be helping significantly. The Wild Oil of Oregano has probably helped but AFAIK it hasn't been well studied. While I'm not cured this combination certainly seems promising.
Update - One month after starting Bupropion the ulcer has skinned over 60% of its original size. The final lab results showed no infections/fungi/etc so it is definitely Pyoderma Gangrenosum.
Post Edited (weirdal1968) : 10/19/2017 4:16:41 AM (GMT-6)