Pyoderma Gangrenosum

Posted by danleone on February 3rd, 2008 filed in health, uncategorized

I would Google that ONLY if you are brave. That condition, my friends, is what I have been battling for over a year and a half. I am currently in the midst of an excruciatingly painful time in my life. Due to this condition, I am almost unable to stand up and need a cane to walk If you would allow me a chance to explain it, perhaps it will explain the on again, off again, affair I am having with my blog.

About 18 months ago, I had a spot on my leg that would not heal. It was about the size of a nickel. I went to a dermatologist and was immediately diagnosed with a Brown Recluse Spider bite. I was treated with very painful injections once or twice per week. The wound gradually became bigger and grew to the size of a small saucer on my lower left shin. I had it biopsied and had to spray painful concoctions on it, but with little benefit. All the while, this thing grew bigger and the pain almost floored me. It was greater than the pain that comes from a wound. The pain was throughout my leg.

Eventually, it decreased in size and healed, leaving an ugly scar on my shin. I was able to get back on with my life and thought nothing much about it.

But then it happened again….in a different location on the same leg. This all but ruled out the possibility of a spider bite. It was now diagnosed as pyoderma gangrenosum. PG is a rare, painful condition where an ulcer develops usually on the legs. There is no known etiology and no known cure.

This new ulcer was located on the back of my thigh. This made walking almost impossible. I took a 6 week leave of absence from work this past October and laid flat on my back during most of that time. Taking time off from work is one thing, but there is no taking time off from being a dad. My family was somehow patient with me as I buried myself in the attic. But I still needed to function and be a part of their lives….even if with some difficulty.

This would eventually healed using some really heavy immuno-suppressant drugs. Now add a new scar to the back of my thigh.

Additionally, I have made severe dietary restrictions based on what one of my doctors suggested. That is fine, since I have lost 60 pounds…45 pounds now.

So, I went on with my life, feeling like a nightmare was over. Then last week came. I noticed a small bump in my leg and my heart raced as I thought about what was about to happen to me again. This time it was on the right leg, behind my thigh. One week later and I can barely get off my ass as the pain is already too great to handle. The drugs I need to take now include chemotherapy drugs in low doses. I doubt my hair will fall out, but I can tell you that my stomach is doing somersaults. I need to micro-manage the wound care too which includes a TON of tape and gauze and wincing in pain. I need to carefully take showers as the water is painful too.

As I type this, my leg is in incredible pain. I cannot stand and I can barely drive. It begins, again and there is nothing I can do about it.

Amidst all this pain, the world does not stop spinning for me. Work is presenting itself with many projects and deadlines that normally would excite me but are now just frustrating me. At home, I lay here knowing that I need to continue to be there for my father and mother as he deals with MUCH worse than mere pain in the leg. I need to be there for my family as we struggle with myriad crises; some of them serious. We are in the process of moving from the first floor to the second and bringing my parents from the second to the floor. This is a logistical nightmare which is quickly becoming impossible to manage.

I have not told many of you my battles with this blasted disease, because it is both hard to talk about and because it is humiliating and gross. But, I want to share with you what is happening in my life because you are as much my friends as are the people in my real world, In many cases, more so.

It is 2AM, my hands shake as I type in pain. I feel sick to my stomach and want to go into the basement and hack off my leg and I would if I knew it would solve this problem. But then I remember, that my 10 year old has been lying to us about his homework and now we need to spend all of Sunday trying to make up for the last two months of not doing it. I need to call a tree cutter to deal with the two trees that are precariously close to our bedroom window and I need to go to work to try to meet a deadline this week. All this while trying to forget my leg even exists right now.

Sorry to be so maudlin, but I am mad right now at the cards I have been dealt.

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28 Responses to “Pyoderma Gangrenosum”

  1. t'other Dan Says:
    February 3rd, 2008 at 3:07 am

    That sounds pretty unpleasant Dan, and the frequency it’s happening must be very worrying. Hope you recover from this bout swiftly.

    I didn’t do any homework for around three years and it never did me any harm. Well, apart from gaining lackluster grades and ending up going to a bottom of the pile university to do a degree that I had no real interest in.

    I wish i could go back in time and give the 13 year old a swift kick up the behind

  2. Lilacspecs Says:
    February 3rd, 2008 at 4:06 am

    Oy Dan, I’m so sorry to hear that you have to struggle with so much right now. Don’t be ashamed about being human and having to deal with fear and pain and frustration. When you’re dealt a bum hand every now and then it’s natural to be upset and angry. But if life was always fair, we might not ever end up being stronger people.

    My best wishes for you.

  3. paisley Says:
    February 3rd, 2008 at 8:29 am

    i have been wondering where you were… thats some nasty shit dan… i sure hope they can fix it up for you soon,, as i know you have been putting so much effort into health and fitness lately and this must have really been a boulder in the road for you…

  4. mahala Says:
    February 3rd, 2008 at 11:10 am

    I’m so sorry to hear about your pain. It seemed like you’d stopped posting just when I’d discovered you. *hugs*

  5. Ivy Says:
    February 3rd, 2008 at 11:45 am

    I’m sorry you are going through this. Sounds very unpleasant. I can only hope you recover quickly from this one.

  6. sophie Says:
    February 3rd, 2008 at 12:04 pm

    I am so sorry you are having to deal with this. It does seem that your plate is mighty full lately. Hang in there. You will find strength you didn’t know you had. Best wishes. Also, I’m sure you have good care, but if you ever need a bit of help in the *medical to English* translation, I’d be happy to help.

  7. Chuck Says:
    February 3rd, 2008 at 12:34 pm

    Dan, I’m sorry to hear you are wresting with this. I hope these cards you’ve been dealt change suit, for the better, sooner rather than later.

  8. terri Says:
    February 3rd, 2008 at 7:09 pm

    hugs

  9. Gina K Says:
    February 3rd, 2008 at 10:44 pm

    Hey Dan, wish I could do something to make it all better for you…hearing about your lifes trial and tribulations sure make mine seem pretty miniscule…I will keep you in my thoughts :)
    Gina

  10. People in the Sun Says:
    February 4th, 2008 at 3:09 am

    Shit.

    But definitely not humiliating, you know? You’re dealing with incredible pain and frustration in a heroic way, when giving up and sinking into self-pity would have been so easy.

  11. Jodi Says:
    February 4th, 2008 at 7:14 am

    Ah man…
    And I have bee funning you all this time…What words can I impart? “Cept my wishes go to you…

  12. ender Says:
    February 4th, 2008 at 8:26 am

    i’ll try to get hold of my oncologist and see what the name is of the anti-nausea meds they used for me … there’s one that a local pharmacy made right there which was a cream that worked “instantly” on the chemo-drug induced nausea. (i know … a pharmacy that MAKES drugs instead of counting pre-made pills)

    i’ll be winging good thoughts your way.

  13. Kristina Says:
    February 5th, 2008 at 1:58 am

    The pain is strong, but you are stronger. Your body knows how to heal itself and the chemo will remind it of what it needs to do. You can relax, let go, and allow your body to work with the chemo. These feelings are a part of you, and you do not have to fear them. You can accept them. You can trust your body to heal itself. In this, you can find inner peace. You are bigger than this. You have patience, you have strength. You will make it to the other side.

    Or that’s what I would tell you if I were your doula. Sending healthy, healing thoughts out to the universe for you.

  14. Kristina Says:
    February 5th, 2008 at 2:05 am

    One other thought. And this thought in no means is meant to trivialize what you are going through and the real pain and real illness you are undoubtedly experiencing.

    When did you find out about your father’s diagnosis? And do you think that on some level the death of the tissues on your legs could have a connection with your father’s illness? (Just a thought – I have absolutely no answers.)

  15. bmgmom Says:
    February 5th, 2008 at 8:01 pm

    Oh, Dan, I’m so sorry to hear this. I wish I could do something to help. Sending good thoughts and hopes your way…

  16. Avery Says:
    February 8th, 2008 at 4:17 pm

    Dan, I had no idea you were dealing with so much pain. I wish there was something I could say to make it better. Alas, you’ll have to make due with my admiration of your character in dealing with this disease and my hopes that your recovery will be quick. I’m so sorry.

  17. Kristina Says:
    February 10th, 2008 at 10:32 pm

    So, so very sorry!!

  18. Deb (Missives From Suburbia) Says:
    February 15th, 2008 at 11:44 pm

    You need some Zofran if you’re allowed to take it. Or a medicinal marijuana license (your wife would be thrilled with you then, wouldn’t she?)

    Do you need me to come consult on the moving process? I’m a brilliant mover. Just say the word. In the meantime, you’re in my thoughts.

  19. Joni Says:
    August 4th, 2008 at 12:36 pm

    Hi Dan,

    I too have this horrible disease. When I read your blog I cried as I am in that kind of pain right now. Have they ever tried Remidade on you? I have been through Imuran, Cyclosporin and now Remicade? Do we know if it’s working…not yet…but it is showing promise. Lots of new tissue growth etc. I feel your pain and your frustration and disappointment. We will get through this somehow!

  20. Kathy Says:
    May 20th, 2009 at 8:23 am

    How are you now???? I have PG and I’m about the embark on cyclosporin??

  21. Kimberlie Says:
    May 25th, 2009 at 4:51 pm

    Hello, hubby has it also. Almost 2 years, still cant find the right cocktails of drugs to heal it. He even did Hyperbaric Oxygen Therapy. He had a week of relief and more started popping up. Meds as to date, Remicade, Tysabri, Immuran, Humira, double dose Humira with Methotrexate, Cimzia and Methotrexate. I am sorry for your pain. It is horrible. Like having Crohns is not bad enough?

  22. Jackie Cooper Says:
    July 28th, 2009 at 3:56 pm

    Dear Dan,
    I was very sorry to hear about your long bout with pyroderma gangrenosum. I, myself believe that I have a mild form of the blasted stuff, as I have some small reddened abrasions which have not healed for over three years. When I can’t stand the unhealing scabs any longer, I pick the scab and within a couple of days, a scab reappears. My doctor has pretty much ignored me in my plight and tells me to “quit picking” them. Presently I have two sores – one behind each ear. There have been others, which occured on my back, shoulder, buttocks and thighs but have cleared up on their own)after two to three years. I have battled this disease since 2003 after being hospitalized with a severe GI bleed where I became enemic and also developed thrush on my tongue. I have a diagnosis of ulcerated proctitis.

    What has helped me (though has not yet cured me)has been a yeast-free diet and Dr. Schulz’s Formula I intestinal formula (check his web page at: http://www.herbdoc.com

    I also plan to not try a product walled Hydorfera Blue and follow the “specific Carbohydrate Diet” which I have found info on through google.

    Hopefully what I have told you will help. I never believed that yeast could be a culpert. There is a book out there called “The Yeast Connection” which I found very helpful in helping me determine my yeasst problem in my diet.

    Jackie Cooper

  23. frances Says:
    July 30th, 2009 at 1:56 am

    Hi-I know all your pain. Suffered with two different pg breakouts a few years ago. It was associated with my ulcerative colitis. Never had so much pain in my life. I finally got an ointment from the doctor that I put on a spot that is starting to hurt. It is Protopic ointmnet 0.1%(Tacrolimus ointment)It is cyclosporin based and it usually knocks it out within a week before it breaks out into an ulcer. Have a weird pain starting on my shoulder-praying it’s not pg. It Sucks–I feel like I’m always waiting and wondering. Trying to keep a positive attitude. Hope this helps somebody.

  24. clifford Says:
    August 14th, 2009 at 5:26 pm

    I have a PG sore on my leg, below the knee, about 40% of my shin is effected. I’m 40 years old and have no other medical conditions. Over the last few months my entire life has changed because of this situation. I’m scheduled for a colonoscopy next week to confirm IBD. I have had the symptoms in the past but currently feel fine except for this giant open sore on my shin. This ulcer is stingingly painful, bleeds and demands constant attention.

    I have found that using an’ace bandage’ to wrap up my leg, keeping the gauze in place is more comfortable than tape or bandages. Also because my PG ulcer bleeds and produces ‘fluid’ my bandages/gauze gets cemented to my leg. A nurse taught me to just use a solution of water and hydrogen peroxide (50/50) to dampen the bandages prior to removal and this works like magic. The shower on my sore really stings but this solution is virtually painless.

    I hope this thing gets cleared up if/when my IBD treatment starts.

    goodluck,
    c

  25. Brian Says:
    September 10th, 2009 at 9:42 pm

    Hey,

    I got PG too, on my center toe and ball of my foot. Smaller than most I have seen on legs, but a nasty little place to get cream and bandages to stay in place. Walking is a joke.

    Pain has been increadible. Up all night every night for months now. Cant sleep without pain meds. PG totally runs my life. I am on a cocktail with my dr who take blood every other week to check progress. Soooo slow to heal. I now have the nasty yellow stuff covering the wound that is a sign of healing up.

    I have dreamed about simply shooting this toe right off my foot.

    Keep up your spirits!
    Brian.

  26. Diane Louise Says:
    November 3rd, 2009 at 8:47 am

    Hi. I am so sorry to read of your PG. I have had several bouts with this over the last 20 years. The Drs (dermatologists and Rheumatologist) and I have found that prednisone is very benificial at keeping the ulcerations at bay. Once ulceration begins there is a little known bandage that has had some very good success. It is called Hydofera Blue. It is a simple idea that has provided me with much pain relief. There is a website. Hope this can give you another avenue to explore. Feel free to ask me specifics.

  27. robert Says:
    November 22nd, 2009 at 3:29 am

    I feel for you brother. I was diagnosed with PG yesterday and now I’m waiting for whatever is next. I first noticed the pain from a small red bruise like spot on my leg Oct. 31st and it had spread overnight (L S S) Saw 4 doctors at there differant times , ultra sound, lab test and a biopsy and now 21 days later they tell me it’s PG. Now what? Took that long to figure it out now we have to figure out how I contracted or developed this painful problem. I am not a diabetic, my colon and bowels are I just want to now how I got it and how to get rid of it the wound is now starting to open up and bleed. Can anyone help?

  28. Dr. Michael Miller Says:
    December 29th, 2009 at 1:19 pm

    I found your blog looking for info to give to a patient. As a full time, certified wound care specialist, I have seen many patients with unon-healing wounds who have been misdiagnosed with PG and treated inappropriately and (fortunately) a few who had PG but were undiagnosed. The message to all who read this blog is that if you are treated and do not improve with 4 – 6 weeks of treatment, then it is time to look elsewhere for help. You can certainly ask any doctors office if they treat PG and how many cases they have seen before making an appointment. There are a lot of different kinds of non-healing wounds and different treatments for each one. One size never fits all and in my practice, antibiotics are one of the last things we consider. I use Protopic with great results for PG but also make sure there are not other conditions simultaneously (venous disease, vascular disease, etc.). Additionally, adequate pain control is a must for all PG and other wound patients. Best of luck with your condition in the New Year.

    Dr. Michael Miller
    doc@docmillers.com

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