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Weird Symptoms: Pyoderma Gangrenosum

Many of us know that Crohn’s Disease and ulcerative colitis can come with extraintestinal manifestations. In fact, one of the things I know many IBD (inflammatory bowel disease) patients wish the public knew is that CD and UC are far from just bathroom diseases.

IBD has the ability to impact a person’s entire body.

Before I continue, I just want to make it very clear that inflammatory bowel disease manifests differently in every single person. You will not find any two people whose bodies are impacted the same way. You will find many similarities and overlapping symptoms, but my IBD is not your IBD. I have said that in other articles, but it is especially important in an article like this, in my opinion. I don’t share things to scare anyone. I share my experiences to show anyone else suffering that they aren’t alone and to hopefully bring some awareness in the process. Those are my two main goals when I write. Always.

Anyway, now that my little disclaimer is over… I wanted to share the worst extraintestinal manifestation of IBD that I have. It is called pyoderma gangrenosum (PG). I am actually amazed when doctors know what this is, which lets you know how rare it actually is. Needless to say, I had no idea what it was before I was diagnosed.

Mayo clinic defines this condition as follows:

“Pyoderma gangrenosum is a rare condition that causes large, painful sores (ulcers) to develop on your skin, most often on your legs. No one knows exactly what causes pyoderma gangrenosum, but it appears to be a disorder of the immune system. People who have certain underlying conditions, such as inflammatory bowel disease or rheumatoid arthritis, are at higher risk of pyoderma gangrenosum.”

The sores I had were by my stoma, which is called peristomal. Saying this was painful would be an understatement. It was also made worse by the fact that with an ileostomy, you have to wear an appliance 24/7, covering the affected area.

I remember going to my surgeon four months following my last surgery of that year (2011) and him telling me what it was and explaining how a week in the hospital on cyclosporine would most likely help. At 15, this medication was the only other option before going to surgery, and my parents wouldn’t allow me to try it. As I understood it, it was detrimental to many other organs with only a small chance of helping my large intestine. So nine years later, hearing this drug mentioned again was frightening. My doctor went on to tell me the other treatments, which were exactly the same as those used for inflammatory bowel disease. Steroids and biologics.

I looked at him and laughed; a reaction I never had before.

In some ways, after enduring my 14th open surgery and finally giving in to the fact that I had to live with a permanent ostomy, it felt like all of the terribleness I had endured for so many years was happening again…

I felt like all of my fighting was for nothing. I was truly devastated and blown away because I never could have imagined in my wildest dreams (and I have some crazy dreams thanks to PTSD!) that I would be sitting in a doctor’s office, in absolute agony because of ulcers around my stoma, hearing that I had to fight something else.

From there, I went to see a dermatologist who confirmed the diagnosis and was able to treat it with steroid injections (I had to go to his office a couple times a week initially) over a period of six months. During that time, I was barely able to leave the house aside from those appointments because my appliance would not stay on and I was in so much pain. There were nights I would be up screaming and that is not like me at all.

I was lucky that my pyoderma gangrenosum was kept under control by steroid injections alone.

I was incredibly thankful, even though it took a long time and greatly impeded my quality of life- obviously! However, I still remain scared of it returning. It is another chronic condition that I don’t have any control over. I know trauma to the skin can cause symptoms to re-appear but given that no surgery I endure is optional, there isn’t much I can do about it except for being vigilant about making sure anything that looks even remotely like it could be PG is seen by a doctor who is well versed in this skin condition.

Following my most recent surgery in June 2016, I had ulcers on my incision. It looked just like PG only without the intense pain. The dermatologist I saw took numerous pictures of it, gave me some prescription cream, and told me if it didn’t go away within the next two weeks with the cream, we would have to begin to treat it as though it was pyoderma gangrenosum. I was petrified but given the absence of intense pain, I was praying the cream was the answer. And it was.

I have had a document called “PG” opened on my computer for a very long time. I wanted to write about this rare disease because I do remember the one time I did, I received a message from a fellow IBDer who was so happy that someone else understood.

While this is difficult for me to talk about and I am not sure where I am with my acceptance of it right now, I hope anyone reading this who have had some of these experiences (either with pyoderma gangrenosum itself or another extraintestinal manifestation of IBD) knows that they are not alone.

I really get it.

Have any of you been diagnosed with this rare autoimmune skin condition? Do you feel comfortable sharing your experiences?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • MNmusicmom
    1 year ago

    I felt like all of my fighting was for nothing. I was truly devastated and blown away because I never could have imagined in my wildest dreams (and I have some crazy dreams thanks to PTSD!) that I would be sitting in a doctor’s office, in absolute agony because of ulcers around my stoma, hearing that I had to fight something else.

    Thank you for writing this – this is exactly how I feel right now. I have been fighting a peristomal “infection” for 4 months now that has turned out to be pyoderma. I’m even at the U of MN, who you would think would know what they are doing. I just feel like giving up fighting for quality of life. Crohn’s wins. I give up.

  • thedancingcrohnie moderator
    1 year ago

    I luckily have not had PG but I did have Erythema Nodosum when I was first diagnosed and that was a nightmare. So I cannot imagine having PG. My heart goes out to all who have dealt with it, it sounds terrible.

    Press on, warriors, I’m rooting for you.

    Always dancing,
    Elizabeth (team member)

  • Dolores
    2 years ago

    Thank you for sharing your story, Marisa!
    I was diagnosed with pyoderma gangrenosum today. Actually my gastroenterologist was telling me 3 weeks ago that a small nodule I had on my ankle from a mosquito bite was PG, but I did not want to believe him. 🙁 he did not recommend that I should do anything about it though.
    The small nodule grew until the pain was unbearable. I could not walk and the gastroenterologist sent her to a surgeon. What a mistake! After the surgery it started to progress faster. Is huge and looks really scary. Today my gastroenterologist referred me to a dermatologist and the pyoderma gangrenosum diagnosis was confirmed.
    So once more I will be put on steroids… After taking them for 3 months for my uc I was happy to finally stop them. And now this.
    It is such a rare disease that just found it hard to believe that I was the “lucky” one to get it.

  • Marisa Lauren Troy moderator author
    2 years ago

    Ugh I am so sorry you had to go through that experience and still have to worry about PG on top of your UC. I also kept thinking about why I was one of the “lucky” ones to not only have to deal with IBD, but pyoderma gangrenosum as well. We are always here for support and trust me, we really do get it. :)~Marisa

  • tapalmer
    2 years ago

    Hi Marisa. I can really empathise with you. I had Pyoderma for 8 and a half years of the disease process and another 5 years of healing afterwards. I had been originally diagnosed with Crohns because of presenting with a mouthful of ulcers including lips and down my throat through to my small intestine. After the initial breakout though the ulcerations didn’t return to my bowel but my whole body excluding feet and around the middle of my trunk area were covered , even my scalp and every biopsy site and I.V. site would ulcerate within 24 hours. Its a very hard disease to diagnose so that meant doing every test known to man in a crazy game of elimination. The pain was incredible and it took a whole lot of morphine to get it even slightly under control so I could sleep. It really is a worry to see if it would return but so far it has stayed away even after recently having half of my lung removed with lung cancer. I don’t think you ever forget this disorder/disease once you’ve had it and of course with so little known about it just what might set it off.

  • Marisa Lauren Troy moderator author
    2 years ago

    Oh wow, I am SO sorry you have been through so much with this disease and obviously other major health issues! I couldn’t imagine going through this for as long as you have. My gosh, my heart breaks for you! I completely agree with the last thing you said about once you have this disease, its really impossible to forget. It is very scary that so little is known about it, and to my knowledge, it isn’t being widely researched (hopefully I am wrong though.) Do you have Crohns in addition to PG or was the diagnosis changed if you don’t mind me asking?

  • perpetualpooper
    2 years ago

    Stoma surgery**

  • perpetualpooper
    2 years ago

    I had my Soto my surgery in April of 2015 and in December started getting horrible ulcers in my mouth. After a week in the hospital they sent me home on prednisone and things only got slightly better. About a week later I started getting a bad rash that was itchy and all over my arms, legs and back. This turned into blisters and circular sores all over. After seeing a dermatologist she determined I have Linear IGA Bullous dermatosis. Which a very rare skin disease only found in people over 60. I am 34… it’s been a year now and I finally have some relief. I’ve been on prednisone for a year, dapsone for about 8 months and now colchicine to help me ween off prednisone. I’m also doing Entyvio infusions every 8 weeks. I also get blisters around my stoma and have had some really awful days of trying to keep my appliance on. My biggest fear now is when will it come back?

  • Marisa Lauren Troy moderator author
    2 years ago

    Wow, I am so sorry to hear this!! I do appreciate you sharing some of your story though. Helps to know we aren’t alone since these issues aren’t really something you discuss with most people. I completely understand that “when will it come back” fear? Please know we are always here for support!

  • mjager
    2 years ago

    It took me 6 long years to get a diagnosis of Crohn’s disease. I had a few gastrointestinal episodes per year but thought they were just bouts of the flu. I suffered immensely from symptoms of RA. I was given OxyContin and it barely took the edge off the pain. My joints would have all the pain and swelling of RA but not the damage. I went to every Rheumatologist in the area and not one of them could figure me out. Finally I went to one out of my area and he recommended I get a colonoscopy. So I did and the Gastroenterologist told me I had Crohns and once I was in remission and taking medication for Crohns my joint pain disappeared.

  • Marisa Lauren Troy moderator author
    2 years ago

    I am sorry it took so long for you to get a diagnosis! I can imagine that must have just been gut wrenching, to say the least. I am so glad you are on a medication that is helping your Crohn’s Disease. Oftentimes, inflammatory bowel disease and joint pain go hand in hand. 🙁 Please keep us posted on your journey!

  • mjager
    2 years ago

    I still deal with abdominal pain and I get a rash on my legs every so often. I also have type 2 diabetes now which makes my treatment all the more tricky.

  • Dorinne
    2 years ago

    In 2008 i had to have an ostomy, apparently the surgeon didnt realize that the intestinal part used for it wasnt clean enough, some of the disease lingered, and caused they Pyoderm. a month after the surgery the ostomy and its surroundings were literally being eaten away by this. Crohns is painful enough but I have never felt pain this bad. Another surgery(by a different Dr. and hospital) had to be performed. Luckily, its now 2018 and the newer ostomy has been perfect. no issues at all. the scarring from the pyoderm site is hideous. however I am grateful i found the best surgeon in my book in NYC!

  • cmckinney118
    1 year ago

    Hi! I’ve been living with UC for 10+ years & have also been diagnosed w/ PG. So sorry to hear your story, but glad in the end you found a great Surgeon. I am considering surgery & live in NYC as well. Would you recommend your surgeon? If so who was it if you don’t mind sharing? (I am looking into my options)

  • Marisa Lauren Troy moderator author
    2 years ago

    Hi Dorrine, thank you for sharing some of your story- although I am so sorry to hear you suffered with PG also! I am also from NY and was treated in NYC 🙂 Keeping my fingers crossed things continue to go well with your new ostomy. Please know we are always here for support!

  • Marisa Lauren Troy moderator author
    2 years ago

    Dorinne* I apologize for spelling your name incorrectly before!

  • Dorinne
    2 years ago

    on the plus side, now that I have one of the top Crohn’s Disease specialist on eastern seaboard, her decision to to use Cimzia injections has put me in remission for 6 years now!

  • scyllax
    2 years ago

    Where are the pyoderma gangrenosum sufferers from? I am writing on behalf of a person who has the worst case of IBS – D her internist had ever seen. In 2013, a slight wound on the site of polyarteritis nodosa on her lower left leg turned into pyaderma, which the wound doctor treated the normal way, which made it worse. He diagnosed her properly in 2014, and topical steroids ended it. She has also has a dozen other disabling conditions that would limit anyone’s life. We live in Maine.

  • Marisa Lauren Troy moderator author
    2 years ago

    Hi there. Has the person you are speaking for seen a gastrointerologist? He/She might be better qualified to see if your loved one has a form of inflammatory bowel disease, as opposed to IBS. It is so common for people to be misdiagnosed, as I am sure you can imagine. Please let us know if there is anyway we can help.

  • tapalmer
    2 years ago

    Hi. I’m from New Zealand and had Pyoderma from 2000 to 2009 then healing to around 2014. A terrible painful disease that is truly unforgettable.

  • mjager
    2 years ago

    I’ve had the other disabling symptoms. I live in Michigan.

  • WendyY
    2 years ago

    I live in Texas

  • deb55
    2 years ago

    My daughter also has PG. She has had the sores near her stoma and also on her upper leg for over a year. Started treatment for the PG but had to stop to get ready for more surgery. This last surgery they had to relocate her stoma remove an abcess and fistula and the surgeon cut out the PG near the old stoma. 2 months after surgery has finally started on humaria weekly, a cream daily. but no steroids at this time. PG is the oddest complication and so many Drs know nothing about it. Her dermatologist is fantastic and working with all her Drs is the key.

  • Marisa Lauren Troy moderator author
    2 years ago

    I am so sorry your daughter has had to suffer so much! I agree in that PG is so strange, that many doctors don’t even know what to do with it. I agree it is key for everyone involved in care to be working together. So glad you and your daughter have that working to your advantage, at the very least. Please let us know if there is anything we can do to be of help. Thinking of you both and sending love and support.

  • WendyY
    2 years ago

    I was diagnosed with Crohns back in 2001. At first I didn’t realize there was a problem – I started loosin weight – even though I would sometimes eat like a horse. Until it got to the point I looked anorexic and was in th bathroom every 2 hours. Remicade put me into “remission”. Or so I thought. Yeah I get flare ups every now and then – but didn’t think much of it. Have even been back to the GI recently and the Crohns is at moderate. But now there are other things added. Including this “Pyoderma Gangrenosus”! It started in February of this year – my husband and I were on a flight to vacation – and I felt a burning sensation at my left ankle. Felt like someone was holding a blow dryer against my ankle. Showed up as a slight rash the next day and continued to spread on the left foot. Before we headed home was also on the toes of the right foot. Went to PCP and she sent me to Dermatologist who did a cut biopsy which came back at vadculitis (by the way – that site did not heal for 4 Months). Anyway – the rash started blistering. Went back to PCP – was sent to Rhuematologist- he ran blood work to rule out everything and started me on IV steroids. Determined that it was caused by the Crohn’s. Told to keep clean and continue steroid pills. Eventually asked to see a wound care person when the ulcers broke out. Sent to infectious diseases (no major infection) and then Podiatrist. He was the first to actually tell me what to do to start tying to heal the mess that my feet were in. I finally got the final ulcer to close up in November. Now, in January, and still working with trying to get the scar tissue to loosen up so that I can walk correctly. This PG stuff is really really bad. I never realized that Having Crohn’s would cause problems with other parts of my body – especially my feet! I was so shocked to read this post on FB and both happy and sad to find out that other people understand the pain this causes. I thought I would go crazy. All my life I have had a high tolerance for pain – until this. I thought I was just getting weaker in my “old age”. I sure as heck walk like an old lady now. I have to say that as bad as this has been having PG on my feet and ankles – I can not even imagine the pain these other’s have had Having it at your stomach’s and chest. I pray for all of us to never have this flare up again.

  • Marisa Lauren Troy moderator author
    2 years ago

    Wendy, my heart really goes out to you! It is amazing what Crohn’s can lead to… and you’d never in your wildest dreams imagine some of the things. Like you said, your foot! Who would ever link those two together? There are a lot of great articles on this website that start with “Weird Symptoms” – might be worth checking out 🙂 I know it always helps me to know I am not alone. I feel the same as you though… happy to know others get it but also sad others can relate to such pain and mental anguish. We are always here for support. Please be sure to keep us posted on your journey!

  • pmariehood
    2 years ago

    I had breat reduction surgery in June 2014. 5 days later I was in emergency surgery. , 1 of 13 surgeries in less than 21 days. My hospital stay lasted over a month. All because of PG. I had no underlining autoimmune issues that gave the CDC any heads up. I was admitted into the hospital under flesh eating bacteria until tests came back . The pain was beyond belief. I lost 70 % of my left breast and chest and 50% of my right breast with a hole so deep the nurses could see my ribs bones during bandage changes. So my fellow PG warriors. There will never be a pain anyone could understand like the battle we fight with PG. I do Remicade for my PG and recent diagnose of RA. Go figure, you know one of the other autoimmune S was going to rear its ugly head. In July 2015 I was diagnosed with aggressive RA. I find Remicade to be my life saver.
    Prayers to all the Crohnes UC RA PG warriors .

  • Marisa Lauren Troy moderator author
    2 years ago

    My gosh, what a story! I am so sorry to hear this but am glad Remicade has been able to improve things for you. My doctor initially referred to it as “the miracle drug.” I completely agree that PG is in a whole different ballpark when it comes to unbearable pain. Fingers crossed we wont have to experience another flare!!

  • Crohnie4u
    2 years ago

    I also am battling PG I am seeing the WOC nurses who are WONDERFUL & teach me how to care for my peristomal ulcer. Yes, it is VERY painful to the touch and bleeds if you accidentally do so…YIKES!!
    So far the healing process….not much of a change, however surgeon says it will take a while.
    So changing my bag:
    Remove the bag
    Clean area with warm water
    I cut a piece of my protective seal ring and roll into a worm and put around stoma for extra seal
    Next cut to fit a piece of silvercel to help keep clean and dry place over ulcer
    Then cut to fit a piece of duoderm to help keep dry as well and place directly over silvercel ( butting both of these up against the stoma)
    Finally place bag on

  • Marisa Lauren Troy moderator author
    2 years ago

    I am so sorry to hear you’re suffering with PG now but am really glad you have such a wonderful care team. It can be a lifesaver, I know! Please keep us posted on your journey!

  • beckyjean00
    2 years ago

    I had this exact same thing! First surgeon that saw me tried to cut it out. He was not a specialist in this area, and had no clue what it was or what he was doing. So I went to a GI surgeon specialist and she informed me that cutting on PG was the same as throwing gas on a fire. So it was months of steroids injections, high doses of oral steroids, a bag that leaked at least once a day. Even after it was finally healed, there was such an inented scar next to my stomach that I still had leaking daily. We finally had to move my stomach site.

  • rjbender
    2 years ago

    Although I do not have this particular odd symptom of IBD/Crohn’s, I do have other rare issues from it including eyesight problems, EPI, and elevated liver enzymes. I hear so often “You look fine” or “You don’t look ill.” Only those who endure this type of illness understand. I’ve been living with Crohn’s for 35+ years… and although I intend to truly LIVE while dealing with the health issues, yes, I really feel badly… often. I just try not to let it show.

  • Marisa Lauren Troy moderator author
    2 years ago

    Hearing how fine we look or how “not sick” we seem is so infuriating! I promise you are so far from alone with that one. If you do a search for “weird symptoms” you will find a lot of different other issues such as eye problems like you mentioned. I am so sorry you have to endure more things because of your inflammatory bowel disease. You seem to have a really positive attitude which is admirable considering all you go through! We are always here for support!

  • megsma
    2 years ago

    I too have suffered from Pyoderma Gangrenosum. It was so bad inn June of 2015 I was in and out of the hospital. Nothing helped. Finally they created a special apparatus to attach directly to just the stoma not the skin or surrounding tissue. I was heavely medicated because the pain was just about unbearable. Four times a day they would clean the area around my stoma which was appriximately 4 to 5 inches out from the stoma and I had in my left leg and foot. It took nearly 9 weeks to heal enough to wear my appliance correctly. My leg took much longer a total of 4 1/2 months. The pain alone nearly drove me crazy I was put on a PCA of Dilaudid 3mg automatically an hour plus another 2mg on. demand I could give myself. On top of that I was given 1mg of Ativan IV every 6 hours, steroids thru the IV every 8 hours, 2 antibiotics Zosen every 6 hours IV and Vancomycin every 8 hours. But because I developed a reaction to both of these drugs I was given 50mg of IV Benadryl every 4 hours. Needless to say I slept a lot. I was not eating so I was put on TPN for 6 months.
    The complications from IBD are many and can be extremely painful as well as debilitating.
    I work with my doctor, surgeon and stoma nurse on a Bi-weekly basis to make sure there is nothing going on. I did get MRSA in my bloodstream as a result of these things and the MRSA is now in my lungs and some of my joints. My prayer is that no one has to go through this.

  • Marisa Lauren Troy moderator author
    2 years ago

    Oh my gosh, how terrible!!!! I am so sorry you had to go through all you have and continue to suffer with. It is completely unfair 🙁 I hope there is a cure soon so none of us have to face all of these problems. I appreciate you taking the time to share a bit of your story!

  • megsma
    2 years ago

    I too have suffered from Pyoderma Gangrenosum. It was so bad inn June of 2015 I was in and out of the hospital. Nothing helped. Finally they created a special apparatus to attach directly to just the stoma not the skin or surrounding tissue. I was heavely medicated because the pain was just about unbearable. Four times a day they would clean the area around my stoma which was appriximately 4 to 5 inches out from the stoma and the several patches I had in my left leg and foot. It took nearly 9 weeks to heal enough to wear my appliance correctly. My leg took much longer a total of 4 1/2 months. The pain alone nearly drove me crazy I was put on a PCA of Dilaudid 3mg automatically an hour plus another 2mg o.k. demand I could give myself. In top of that I was given 1mg of Ativan IV every 6 hours, steroids thru the IV every 8 hours, 2 antibiotics Zosen every 6 hours IV and Vancomycin every 8 hours. But because I developed a reaction to both of these drugs I was given 50mg of IV Benadryl every 4 hours. Needless to say I slept a lot. I was not eating so I was put on TPN for 6 months.
    The complications from IBD are many and can be extremely painful as well as debilitating.
    I work with my doctor, surgeon and stoma nurse on a :-Oweekly basis to make sure there is nothing going on. I did get MRSA in my bloodstream as a result if these things and the MRSA is now in my lungs and some of my joints. My prayer is that no one has to go through this.

  • emwesterfield83
    2 years ago

    I was diagnosed with this condition. The module was so large at my ankle that I couldn’t walk. They had to slice and drain and remove the infected tissue. They were afraid that the infection would spread to the bone. The surgery left a horrific hole in my ankle that I had to pack for a month or more and now I have a quarter-sized scar after 2 years. Here for support if anyone needs it. #beenthere

  • Marisa Lauren Troy moderator author
    2 years ago

    Thanks so much for taking the time to comment and let people know they have a “friend” who has been there if needed. We really appreciate you doing that! We are also here for support for YOU if you ever need it. Please keep us posted on your journey!

  • Meagan Heidelberg moderator
    2 years ago

    Hi EmWesterfield83 –
    Thank you so much for sharing. We’re so sorry that you had to deal with this, and that you have such a huge scar 2 years later! Thank you for reaching out and offering such sweet support for our community members! We have an awesome community!

    Best – Meagan, InflammatoryBowelDisease.net Team Member

  • emwesterfield83
    2 years ago

    Nodule… Not module.

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