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.
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.
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