Pyoderma Gangrenosum

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Pyoderma Gangrenosum
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    I’m new here!

    Hi, my name is Calypso1332. I'm here because I have Pyoderma Gangrenosum . Since this condition is so rare I am looking for others with the same diagnosis.

    #MightyTogether

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    Maggie Goodman

    Crohn's Disease and Skin Inflammation

    About a year ago, I noticed what looked like a sore on my arm. I figured it must have been a mosquito bite or some sort of bug that bit me. The next day, it looked a little bigger and very red. I tried cortisone cream to get the inflammation under control, but it didn’t work, as several more appeared on the other arm and my abdomen. It grew every day to where it opened up and had drainage coming from it. I went to the doctor and he had no clue what was causing the spread of the tiny wounds. He ordered a swab, which showed I had a staph infection.  He prescribed antibiotics accordingly and then I was told to come back for a follow-up. Several weeks went by and I thought I was in the clear. The lab work was normal, and my skin was normal — or so I thought. It turned out that the sores returned — but this time it started on my shoulders and spread to my arms, hands, legs, abdomen and back. Another swab was done, but this time it was negative for infection.  The only thing my primary doctor could do was refer me to a dermatologist. When I saw the RNNP, she had a biopsy done on an area and prescribed antibiotic ointment. A few weeks later, the results showed inflammation but the ointment didn’t heal the skin. It took several months for the affected areas to scar over.  After that, I thought the skin issue was gone forever, but I was wrong. At the beginning of this year, I noticed the tiny pinpricks again, but the dermatologist and PA couldn’t identify what was happening to the skin. Then I wound up at a wound care clinic due to lacerating both knees from two falls. When the nurse was done cleaning and bandaging them up, Dr. R. noticed the open sores on my arms and neck. He asked me if they’ve ever been treated, and I told him that ointments and antibiotics were tried but failed to work, especially last year. Out of the blue, he tells me that I have pyoderma, which is an inflammatory skin disease he sees on Crohn’s patients. Even though he ordered home care assistance to change the dressings on my knee and shin wounds, he had the RN put a specific cream on used to treat inflammatory skin problems. It seems like such a long time for the treatment to work, but the visiting nurse and I have noticed a difference in the size and skin color after a month. Three times a week my RN, Hayli, will come to my home, do vitals, and check the sores for inflammation or anything that doesn’t look right. She is my physician’s eyes when I don’t have an office appointment. I’m very fortunate to have an RN who’s well versed in wound care. She’s always answered my questions, and if I had any problems with my skin, she’d alert the wound doctor to get further instructions. I can tell that she’s very dedicated to her job and enjoy what she does. She makes me feel like a part of “the team” because we are working together towards the same outcome. Recently, I decided to do more research on Crohn’s disease and skin problems because I’ve only heard about erythema nodosum and pyoderma gangrenosum. I found it interesting, per the CCFA webpage, that complications such as skin disorders affect up to 20% of those who have IBD. The most common are: –    skin tags–    enter-cutaneous fistulas–    anal fissures–    canker sores Treatments such as steroidal cream, immunosuppressives, anti-TNF agents, antibiotics, topical ointments, or injections are used to treat the extraintestinal complication by a wound care specialist and/or a dermatologist. I never thought that I’d be one of the 20% who would develop another side effect of Crohn’s. I’m very fortunate to have found an excellent wound care clinic to take care of me, as well as an amazing RN who’s well versed in getting her patients on the road to recovery.

    Claire Webber

    Pyoderma Gangrenosum Photos: What Google Gets Wrong

    Not everyone wants to be 100-percent open about their “hidden” disability. If you had the option to turn invasive questions on and off, wouldn’t you? Every day can’t be a day you toss on your “Ask Me About My Hidden Disability” t-shirt, grab your, “Hey! I Have an Illness You’ve Never Heard Of, and Want to Talk!” tote bag, and set your Facebook status to, “Let me educate you about the issues affecting my life with patience, compassion, and citations” before heading out the door. But sometimes, you have the energy and drive to help people understand the world of differently-abled folks. And, if you’re like me, that means you have the energy to shout, “But don’t Google it!” when you’re talking about your illness. I have pyoderma gangrenosum. Don’t Google it. In particular, I have peristomal pyoderma gangrenosum, a condition that causes large, painful ulcers to form around my ostomy site. Living with it is sometimes a challenge, but dealing with the pain and upkeep is nothing compared to coping with the reactions friends and family have after a quick Google image search. Pyoderma gangrenosum has a Google image problem because the only images that come up are examples that would make a wound care/ostomy nurse blanch. Sometimes, if someone texts me asking why they haven’t seen me for a few days, I’ll tell the truth. I’ll tell them I’ve had a flare-up of the ol’ pyoderma gangrenosum. This is usually followed by a few minutes of silence, then a panicked phone call from somebody wondering if I’m dying/in the hospital/messing with them. This is why I’ve developed some coping mechanisms for talking about my illness without having to deal with someone else freaking out on my behalf. Use Simple Language for Your Illness I can explain the severity and extent my illness affects my life without having to use medical terms that send somebody off to a search engine. Instead of saying, “I have pyoderma gangrenosum” when somebody asks about my illness ( and I have the energy and inclination to explain), I can say, “I have a condition that causes me a lot of pain because of skin problems.” Sure, I want to raise awareness for what I’m going through — but it’s also not possible for me to always have that kind of energy. Explain the Difference Between The Internet and Your Experience When I do tell someone I have pyoderma gangrenosum, I will include the fact that if they look of any additional information, they will see worst-case moderate-to-severe examples right on the first page. I know most people want to know more so they can understand my experience better — and I also know what medical websites present isn’t the full spectrum of my experience. Expect Curiosity, but Own Your Time No matter what, if you have an off-the-beaten-path illness or condition with a Google search that leads to more questions than answers, you’re going to deal with curiosity. People are going to Google it. Sometimes it comes from love, and sometimes it comes from a lack of boundaries. When faced with reactions like, “How do you live like that??” or “Oh my God, tell me all about it,” or “I am so sorry, I could never live with something that bad,” remember you own your story and your time. Or ask them for $5 before answering. You don’t owe them anything — and after all, didn’t you tell them not to Google it?