Pyoderma Gangrenosum

Hi. Firstly I would like to say thank you for the add to this group. The relief of finding others who can relate to my illness . Although I don’t have Crohn’s I was told mistakenly in 2000 that I had it but I actually had Pyoderma Gangrenosum. It took several years to get this diagnosis though because of it being so rare. I did have several ulcerations in my bowel initially but once they resolved I didn’t have any more issues with my bowels…

Unfortunately I can’t say the same for the rest of my body. It began with a mouthful of ulcers that extended down my esophagus and into my small intestine but once I’d been hospitalized my entire body, from scalp to ankles began breaking out in ulcer like lesions that Pyoderma is known for. The only part of my body that wasn’t affected was my feet and the main trunk area… I think at one stage I had over 100 ulcerations that would grow rapidly. The pain was huge and didn’t actually get under control for 3 and a half years. The ulcers slowly healed from the top down but on my lower legs continued to get worse. New ulcers came out inside of older ulcers until they were so deep that I lost tendons. At one stage after 4 years I was sent to another bigger city hospital which had an immunology department…

Previously I had been under a Dermatologist then 2 years later a Oncologist. I had tried so many medications my Drs had ran out of ideas. I took Cyclosporin and prednisone in high doses for the first few years then so many others, Azathioprine, cyclophosphorice plus countless others I can’t recall off the top of my head. Not to mention so many others to counteract the side affects from the main drugs. After going to the bigger hospital I had skin grafts on my lower legs as the ulcers were almost right around the whole leg and was very close to getting sepsis. I had been on Flucloxicyline for so long that it was becoming ineffective. After several intense treatments were tried and rejected, charcoal wrapped suction dressings etc I was sent home to go on the theatre list for amputation of both legs. I was horrified and really upset after fighting through this disease and intense pain for 4 and a half years but was eventually weakened in my resolve to keep my legs into agreeing to the amputation.. Fortunately for me I was too underweight to have the operation straight away and my surgeon was on leave for a month. His replacement surgeon didn’t agree with amputation and took me off the list and with the increase of steroid dose I had an improvement for a while. I was on 160 mg of morphine twice a day so was getting some control back of the pain, had to walk on tiptoes because straightening my legs was just too painful. I also had to go theatre 3× a week for 6 months just to have my wounds debraided and dressings changed. I began taking Thalidomide and I think the disease process had began to slow because after a very long, painful 8 and a half years I stopped getting new lesions…

I was pleased I hadn’t known at the start how long this disease would last for as it may of been too much. The tests and medications plus treatments really took their toll on my general health but having my children’s support and help helped me get through. It took another 5 years plus to get the ulcerations to finally heal. Even today the scar tissue being thin and easy to tear i am very vigilant on watching and praying the Pyoderma doesn’t come back. I found out several years after it ended that I actually had Hepatitis C which somehow had gone undiagnosed… Why I was never tested I don’t know but it did explain why my immune system was under so much strain and perhaps what set the whole thing off. Although my case was as severe as you can get the pain even one ulceration can cause is awful, I can sympathize with other sufferers. Thanks for reading my novel and any question you may have or your own experiences would be received with interest and compassion.

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Comments

View Comments (3)
  • thedancingcrohnie moderator
    2 months ago

    Hi tapalmer,

    Wow, I am so sorry for your experience. I can’t believe you were so close to amputation. I can’t imagine how you must have felt and not to mention the pain you were in!

    With my Crohn’s Diagnosis, I experienced Erythema Nodosum during one of my most severe flares, and I remember how painful that was for me to endure. Just a slight touch to one of the nodules on my leg made me yelp. So I literally cannot imagine how you dealt with your ordeal which was way more severe.

    I applaud you for fighting through it all. It is nothing short of inspiring that at one point doctors were discussing amputation and now today you have both of your legs and your positive attitude intact.

    Rock on warrior! Keep sharing your story, you inspired me today and gave me extra strength!

    Always dancing,
    Elizabeth (team member)

  • Meagan Heidelberg moderator
    7 months ago

    Hi @tapalmer,
    Thank you so much for sharing your story! I’m sure there are many members that will be able to relate to your journey. The fact that you have such great support from your family is absolutely priceless. We are glad that you finally got answers regarding your immune system too.
    We appreciate you reaching out!
    Meagan, InflammatoryBowelDisease.net Team Member

  • rebba1961
    11 months ago

    Hello chat away

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