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Crohn's Disease Forum » Extra Intestinal Manifestations » Skin » Pyoderma Granulosum anyone?


09-19-2010, 07:54 PM   #1
incognito
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Pyoderma Granulosum anyone?

I am so glad that I found this forum! I was recently diagnosed with IBD (they haven't decided if it is CD or UC yet because I had ulcers above my ileum, but it might be reflux of the UC?) For years I have been severely anemic and no doctor could tell me why. Starting 15 years ago I started getting pretty serious erythema nodosum, and then 10 years ago it progressed to pyoderma granulosum. I have had all kinds of biopsies of my legs done and tons of doctors looked at my legs and nobody could figure it out. It flared really badly after my two pregnancies, which made my PCP think it was auto immune, but really nobody had any idea what was going on. I did have some diarrhea, but nothing horrible, no stomach pain, none of the classic symptoms. I have never been hospitalized for the IBD.

I had my 3rd child in 2008 (first pregnancy was twins, so I have only had 2 pregnancies) and I flared really really badly. I had PG so bad on my legs that I could barely walk. They were swollen, I had about 15 ulcers at any given time, and I was in horrible pain. My PCP put me on 800 mg of Advil 3x per day (which in hindsight made my UC worse, made my bleeding worse, made me more anemic, etc). Then I started getting a ton of diarrhea. I noticed that it seemed to be related to what I was eating, with wheat being the big culprit. My PCP suspected Celiacs (which can also cause erythema nodosum) and sent me to a GI doctor. He took one look at my legs and I told me that I had IBD with PG, and maybe Celiacs on top of that. I had an endoscopy and that came back clean - no Celiacs. However, several aspects of my diet really aggravate the UC. My colonoscopy showed ulcers throughout my large intestine and some reflux into my small intestine. My GI doc says that because my legs are so bad with the PG, that my IBD is better than he would expect. I just took the blood work to see if this is UC or CD, but my GI thinks UC with severe PG. I am on Pentasa, 1 gr. 3x per day coupled with diet restrictions (no bread, red meat, low HFCS, and I limit preservatives) and am almost in complete remission. However, my PG continues to flare.

While it is encouraging that my UC is under control with the Pentasa and diet restrictions, and while my PG is MUCH better too, my PG still causes really painful sores up and down my legs sometimes. Just last week I had a huge sore on my foot right above my heel next to my achilles tendon, and I couldn't put any weight on it. Luckily it opened and drained on Friday, and while I expect it won't heal for another 8 - 12 weeks, at least now I am feeling much better and I can walk again.

For those of you with PG - what do you do to get it better? Steroids have helped in the past, but I don't want to go on them again unless I absolutely have to due to the horrible side effects. I can't take NSAIDs due to my anemia and bleeding. I did read an interesting article about a study done in Egypt showing a lot of success using nicotine to treat PG, but I really am not willing to start smoking (although my husband thinks I should try nicotine patches!). Right now I just manage the UC and deal with the pain of PG, but it is really debilitating when it flares. Last week I was tempted to go the ER for the PG on my legs just to get some IV pain relief, but I didn't. I am sure I am not alone, however, when I say that chronic pain sucks!

I have another colonoscopy scheduled in December and we will see the progress that has been made with the meds and diet changes over the last year.

Last edited by incognito; 09-19-2010 at 08:01 PM.
09-19-2010, 08:12 PM   #2
seaofdreams
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Welcome incognito (:

I'm glad you've been able to get some control over your UC but sorry to hear you're having so many problems with PG. I get bouts of EN with my Crohn's and I find they're most active when I'm flaring.

Steroids help but like you, I hate the side effects so I avoid them if I can. I don't know a lot about PG but my GI has told me that Crohn's is the underlying cause of my EN and by treating the Crohn's, the EN will be treated too.

I hope someone else is able to give you some better advice on this (:
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09-19-2010, 08:17 PM   #3
Lucy
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Welcome to the forum. I don't know anything about PG, but if there is a place to help you with answers this is a great place to start. I don't blame you for not wanting steroids I said no to them so far. I hope you get better real soon.
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09-19-2010, 08:20 PM   #4
incognito
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Hi Seaofdreams-

My PG flares pretty badly when my UC flares, but it has been explained to me that they are separate disease processes and can flare independently. My UC will flare if I overeat wheat/bread, red meats, HFCS (coke is really bad), procesed/preserved foods, and beer or wine. My PG flares when my UC flares, but also flares when I get sick, when I get a vaccine, and when I get really stressed out. For example, I started a new job on Aug 30 and my PG flared the week after - no surprise there. The predisone only helps my PG if I start it before they ulcerate. After they get the black center and open up I just have to ride it out.
09-19-2010, 09:25 PM   #5
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incognito.. I have had PG but a very mild case on my shins on both legs when I was in Cozumel, shortly after had a major flare and ended up with my second surgery. I also had someone in my chapter of Crohns and Colitis that had severe PG, and she had a cream that finally worked after two years but I apologize I dont remember it. She has Crohns and I have Crohns and a former person here has PG so severe and he smokes so the nicotine theory may not stick. UC and Cd are are to make a clear diagnosis. I have ulcers in my Ileum and just recently got more. And I have a spastic colon. Hiatus hernia and had my gallbladder removed.

The colonscopy you are having could be shown more. Hope you get better soon. Glad you are aboard.
09-20-2010, 05:11 AM   #6
DustyKat
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Hi incognito and

I don't have IBD but I recently attended a wound conference where they spoke about PG. The presenters there indicated that with all the PG cases they had treated they were only able to achieve healing by treating the source of the inflammation with oral steroids and topical steroids on the wound itself. Probably not what you wanted to hear! I hope you can find further relief and healing very soon. Welcome aboard!

Take care,
Dusty
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09-20-2010, 05:31 AM   #7
Dexky
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Welcome Incognito!! We have a user Kello82 who has PG. I think it started out associated with her stoma site but she has recently mentioned it on her legs as well. Here is a link to her thread. It's very long but on later pages of it, she begins to mention the PG:

http://www.crohnsforum.com/showthrea...t=5618&page=19

Best of luck to you!!
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09-20-2010, 09:14 AM   #8
My Butt Hurts
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Hi Incognito! Glad you found us!
I second Dexky's recommendation on reading Kello's thread. In fact, Kello is very friendly and helpful and PG is kind of rare. If you send her a private message (PM), I am sure she would share anything she could with you.

A friend's husband has been battling PG for quite some time now, and the thing that helps it most is to rest it. It is mainly on his leg, and staying off his feet helps a bit. He also did Hyperbaric Oxygen treatments, and those helped a little too. Basically, the more under control your belly flares are, the more under control your PG may be. The only other thing that I remember her saying is that the PG should NEVER be biopsied. Not sure why, but I am sure that Kell will.
Remicade is the drug of choice to control PG wounds right now (says Kim).

There is another guy on the forum who had PG on his legs too, I will see if I can find his threads.

Also - I'm not sure if it is exactly the same or if it is a bit different, but if you search for 'pyoderma gangrenosum', you might find a few more threads about it.

(Don't quote me on any of my facts or spellings there, it's all just from memory. Wish I had more details for you.)

Welcome to the forum, I hope we can help you out!
MBH

EDIT -
Okay! Here's a list of threads that all have 'pyoderma gangrenosum' somewhere in them.
http://www.crohnsforum.com/search.php?searchid=402210

This might be easier though - these are posts as opposed to threads with 'pyoderma gangrenosum' in them.
http://www.crohnsforum.com/search.php?searchid=402214

I tried to search for just 'PG', but it won't let me, grrr.

Crap. I found the other guy with PG. His user name is DustinK, but it appears that his account is inactive.

Another edit - darn! I spelled it pyroderma instead of pyoderma. That might alter my search results, or maybe not since gangrenosum was spelled right.

Last edited by My Butt Hurts; 09-20-2010 at 01:05 PM.
09-20-2010, 12:37 PM   #9
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Hello incognito. I am an old member who went on vacation for a while. My name is Kim. My husband has Crohns Disease, vascular disease, a fistula, osteoporosis and recurring Pyoderma Gangrenosum. He developed the PG back in 2008. I came back to the forum today to share some of our experience with you, and with anyone else who might be interested.

First off, Mikes GI initially referred him to a Dermatologist who did a punch biopsy. This was a HUGE mistake. We later learned that any type of the trauma causes the pg to spread like wild fire. Mike found out the hard way. PG should never ever be biopsied. The diagnosis is done through a process of elimination. That is the single way that it is diagnosed. Mike returned to this dermatologist with a purple shin and ankle. Said Dr. sent him home saying it was normal. 2 days later we found out he had a massive DVT in the same leg after going to the emergency room.

Mike developed PG while on Remicade, which is the treatment of choice. Leaving the Dr.s no choice but to take him off the remi and start experimenting with other drugs on the market. Prednisone was not an option for Mike since he has developed almost an allergy to it.

They tried Tysabri, which again put him in the hospital. It caused shortness of breath to the point of fear it was killing him. They tried Humira, double dose Humira, Humira with imuran. His GI who does not approve of pain meds was giving him scripts of hydrocodone by the hundreds. Then I found Hyperbaric Oxygen Therapy at a wound care center at a hospital close to our home. When I called, as luck would have it, the HBO tech picked up the phone and knew what PG was, and made an appt. immediately.

They did tests to see the oxygen levels in Mikes body. Mike was smoking at the time. They stressed how important it was for him to quit. Oxygen heals, nicotine does not. So Mike quit his 2 pack a day habit. He desperately wanted to be out of the pain.

HBO closed the wound. He went for 4 weeks 5 days a week. We thought we were in the clear, we were wrong. PG is systemic, it is not the same as a superficial wound. The body is creating these ulcers on the leg the same way it does in the gut. The only way for these wounds to stay closed is from the inside out. Needless to say, the wound reopened and grew quicker this time.

With in months Mike was in the hospital for fear of bone infection. Thankfully he did not have the infection. At this point the wound had grown so deep we were looking at tendon. When he was released he went back in the chamber to close it again before developing an infection. His GI came to us while we were in the hospital and said if you do not go out on disability and start taking care of your leg we are going to get a tape measure out. Meaning the next step will be amputation.

Finally Mike threw in the towel and decided it was time to battle for disability. Which is not easy for a man of 46 to admit.

I will wrap it up. Today he is on Cimzia every other week and Methotrexate injections once a week. The Dr.'s are trying to get him on double dose Cimzia. He still has that one wound on his ankle and a bunch of smaller ones on his shin. His Crohn's is very active.

PG is a very frustrating, lonely, painful, depressing disease. It has altered our lives completely. It has put financial stress on us (fighting for disability). But we are stronger today because taking care of his ankle has eased his pain some.

I do not know if any of this will help you. I hope knowing you are not alone is help enough.
Kim
09-21-2010, 09:26 PM   #10
incognito
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Oh, Kim - that sounds awful!!! PG is a horrible disease!

I met with my dermatologist this morning. Because PG is so rare she has only treated 2 other cases of it, and my GI has only seen it once before (in medical school). I feel like a freak show. Every time I come in they want to take pictures and bring in all of the medical students to see it and poke and such.

I tend to get a lot of ulcers, but they don't get very big or deep and they always heal within 4 - 8 weeks. Mine are very very painful (my c-section and dislocated knee didn't hurt as much as these dang sores!!) My dermatologist gave me some potent steroid cream today for to put on the sores before they open up. She said it is the intense inflammation in PG that makes the centers turn black and makes the tissues break down. If we can get the initial swelling down hopefully they won't open and will stay EN. I also got some tylenol with codeine and have to go back in a month. Hmmmph. We'll see. Kind of disconcerting being treated by doctor's that haven't treated this before.
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