Day 7: Raising Awareness for Another Condition!

Today, WEGO Health‘s topic is something too difficult for me to actually think about so I decided to use one of their alternate prompts which is to raise awareness for another condition. The condition I want to talk about is a rare, auto-immune disease that I was diagnosed with very unexpectedly last year around this time. The disease is called pyoderma gangrenosum which I usually explain to people as an extremely painful auto immune disease that causes ulcers on your skin; most often on your leg or at a stoma site. I was having a lot of skin issues on my stomach that I just attributed to the normal skin irritation that comes with having an ostomy bag. When I went to my surgeon for my post op appointment and he told me it looked like I had pyoderma gangrenosum and that spending a week in the hospital on cyclosplorine would most likely do the trick, I started cracking up. I had my 14th operation last year and finally gave in to the inevitability of having an ileostomy because I thought that it would bring me closure. So, here I was, just settling into myself once again and bam…something new to deal with.

Pyoderma gangrenosum is a chronic illness, meaning it can come back at any time or it can be a onetime occurrence. The medications used to treat PG are the same ones that are used for inflammatory bowel disease (ex, remicade, humira, prednisone, cyclosplorine). As with IBD, none of these medications are proven to definitely work. There can be a lot of trial and error since each of these medications individually only has about a 15% chance of working. I was lucky in that it only took about four months of steroid injections at the stoma site for the PG to be in remission. This chronic illness only affects 1-3% of those suffering from ulcerative colitis or crohns disease. My friend Mal and I joke how “lucky” we are since we both always seem to develop complications or diseases that only affects a small percentage of IBDers.

Pyoderma gangrenosum is something that snuck up on me so unexpectedly. I have had a lot of unpleasant surprises thrown my way over the past 12 years but this really tops all of them. Prior to my appointment with my surgeon, I never heard of PG before. And after hearing it was chronic, all I could do was laugh to keep myself from crying and screaming. This illness on its own isn’t as big of a deal as some other autoimmune diseases but since this disease usually affects those people who already have an existing auto immune disease, it can be insurmountable. I really believed I gave myself closure when I decided to have an ileostomy but this new diagnosis and the fact that it can come back anytime, for any reason, and greatly impact the way the ileostomy appliance sticks to my skin scares me to death. I haven’t really spent any time talking about the PG in depth because it is still pretty new to me and something I so desperately want to pretend doesn’t exist. However, I did want to use today to raise awareness for this disease and educate those who may be newly diagnosed or know someone who is suffering from it. I never want anyone to feel alone because I know just how awful that feeling is so I hope anyone who comes across this and can identify with it can take some comfort in knowing that there are others who understand the emotional and physical toll that often accompanies a diagnosis of pyoderma gangrenosum.

  • Jodi

    does it ever stop?!/!?Thanks for sharing and being the strong individual you are. I am sure you have just helped a number of new people on top of those already touched by your words.