Story about Pyoderma Gangrenosum .

My PG jorney

Sep 24, 2016

By: Steve


I could not believe it when I was finally diagnosed.  Gangrene ! Yeesh!

 

I had gone through the diagnostic mill.  Diabetic ulcer, poor circulation , insect bites, nothing fitted and I had a sore.  Not a big sore that just did not heal.

 

One day a nursing sister friend of mine gave me the best and worst advice.  She told me to debride it.  This was the worst.  The benign little sore got woken up and I got my first taste of true PG pain.  After gobbling every pain killer in my home I phoned a Paramedic friend with a plea for a morphine injection which thankfully he gave me.

 

This started me on a mission.  Everyone was wrong.  I wanted to know just what the he'll this thing was.  Over the next few weeks it began flaring.  My skin became ultra sensitive and I reacted to everything. Any injury made a new sore and within 2 weeks I had 8 sores most bigger than the original.

I was admitted under a surgeon who had no clue what I had but gathered around him a team that would work on my case.  Vascular surgeon because my legs were swollen and contested, physician and a dermatologist.  She called PG right from the start but they conducted every test they could think of before settling on it being my final diagnosis. 

I was discharged and the sores retreated.  6 weeks later they came back.  After the fact I learned that I had picked up a cellulitis but all I remember about the week before getting admitted a second time was the pain.  You cannot describe PG pain to someone who has not experienced it.  The sore is the focal point but your skin declares war on you and 10 to 20cm around the sore feels like liquid fire.

2 weeks this time 10 days to kill the infection and 22 sores. Morphine was my best friend.  They have retreated but they are still there.  Waiting.

 

PG is he'll it robs you of your dignity, savings, sleep, family.  It permeates every single aspect of your life.  It debilitates you makes you cry stops you walking, standing and even interacting.

 

The amount of times I cut shore phone calls by saying sorry I'm just too sore. And that pain as your constant companion. 

 

There is a PG group on Facebook.  Join it.  We share what works for us and support each other costs it is hell but it does go eventually 

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