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?