What is Pyoderma Gangrenosum (PG)?
Pyoderma Gangrenosum (or PG) is an inflammatory disease that causes large, painful ulcers to form on the skin. 50% of people who get diagnosed with PG have underlying autoimmune diseases; for me, they are Ulcerative Colitis and Inflammatory Arthritis.
My Diagnosis
I first started suffering with PG in 2022 whilst in an acute arthritis and UC flare. It began as a small hole beside my stoma, which day by day grew bigger. At the time I had no idea what this could be. I reached out to my GP surgery and stoma nurses who both had no idea what it was. I started antibiotics and had swabs of the wounds, both being ineffective.
I felt really alone as I was watching these mysterious wounds get bigger. They even started appearing rapidly all over my legs and back. Within weeks I was admitted to the hospital as an inpatient due to the extent of the wounds. However, at this point I had begun to do my own research and had come across Pyoderma Gangrenosum, which matched my symptoms exactly. After requesting to see a specialist dermatologist, they agreed with my research, and I was officially diagnosed with Pyoderma Gangrenosum.
I was diagnosed with an inflammatory skin disorder that loads of doctors and nurses I encountered hadn’t even heard of! Pyoderma Gangrenosum is extremely rare: In the UK, PG affects only 360-420 new patients every year. This delay in diagnosis meant a delay in treatment for me. And unfortunately, during this time my skin was only left to get worse. The wound around my stoma was now at least 5 inches wide. At the time, I never would have imagined my skin looking normal again.
Treatment – Wound Care & Flare Ups
Once I had my diagnosis, I thought things would get easier. Little did I know everything would get more complicated. I was prescribed all sorts of creams and ointments, including Betnovate scalp application, and any of you with PG will know how much that stuff stings!
I was undergoing daily dressing changes with medical photographers to document the damage my PG had caused. I was taking extreme pain meds just to get through stoma bag changes. At one point I was talking with surgeons about having skin grafts or moving my stoma to the other side of my stomach.
I was started on emergency infusions of Infliximab (a biologic medication) and steroids IV and after a short while we finally began to see improvements! It took almost a year for my skin to fully heal these wounds and I am left with some deep scars, especially around my ileostomy. I still get small flares here and there, but these are much more controlled. But I always live with the fear of a big flare-up again.
The Challenges
Having a wound beside your ostomy brings all sorts of challenges! The biggest one for me was trying to get my stoma bags to stay on. PG wounds are incredibly wet. They constantly weep a thick fluid. So it was difficult to get my dressings to stick, let alone a stoma bag on top of that. The fluid would seep through these absorbent dressings within hours and push my bag off. I had my wound packed for a good 4 weeks, so this just created a really uneven base too. Sometimes I wouldn’t be able to get a bag on at all, or would end up taping it down to be able to get on with basic tasks.
Stoma bag leaks were a frequent occurrence. This wasn’t only impractical: it had an effect on my confidence and mental wellbeing too. It left me scared to leave the house. The thought of having a bag leak in public was enough to stop me from going anywhere – as there was no way I would be able to do these complex dressing changes away from home.
My top tip: Find your micro joys
These are the things that make you happy. When your world shrinks down to constant dressing changes and pain. You deserve the things that make you happy. For me at the time, this was anything from new PJs, my favourite snack or a snuggle with my dog. If you’re in the middle of a flare right now, find yours! You deserve them.
To this day, 3 years after the majority of the PG has healed, I still deal with the aftermath. I have purple/shiny scarred skin around my stoma. This means my bag doesn’t stick to my skin like it used to. I also have nerve damage where wounds were, so I often don’t feel bag leaks. So even now, with healed skin I still feel the consequences of my previous flare.
Day to day survival after Pyoderma Gangrenosum
Day to day, I now manage okay. But I once didn’t. I thought it would never end and it took months of figuring things out, and trial and error, to get the right treatment plan. So if you are struggling with PG, there is light at the end of the tunnel. Be gentle with yourself and hang in there.
My stoma team were amazing and helped me try all different products until we found something that worked. Keep badgering your stoma nurses until you can find a combination that works for you! Do not suffer in silence. Even on days where it all was too much, they would do my changes for me. Most days, it was a two person job.
The turning point for me and my medical team was realising this was all down to my immune system being on overdrive. To keep this autoimmune response under control, I now take weekly Methotrexate and Adalimumab injections. This works a treat for me personally! It’s living proof that no matter how deep or scary the wounds look, your skin can heal. 3 years on, most days go by where I don’t even think of my PG anymore.
Because PG is so rare, I have photos over on my Instagram as seeing it can help make sense of your own flares. If you ever have any questions or just need someone to vent to who truly gets it, my DMs are always open. You don’t have to go through this alone!
Sending healing vibes your way if you’re struggling right now.
