Before continuing to read this article, I strongly encourage you to take a moment to read my previous writings to gain a stronger understanding of my life experiences to this point. I discussed the first time in my life where I was challenged by a chronic autoimmune disease, Ulceritive Colitis in 2003. I also have begun to write of the onset of my second autoimmune disease Multiple Sclerosis, which was diagnosed in 2007. I’m sure most have heard the old adage, “things tend to come in threes” for my health conditions this adage rings true.
It was fall 2012, while most of the world was awaiting the “end of days” on December 21st, 2012 my family and I had enjoyed a beautiful summer vacation away from home for the first time. We travelled to a destination my wife and her family went to often when she and her sister were young. A gorgeous ski resort that opens up as a tourist attraction over the summer months. Our son would have been about three months old and daughter just over two years old. To this day it was a trip to remember.
It had been five years since my diagnosis of MS. I had now failed on two treatments and found myself on a medication that my body seemed to tolerate quite well. Which I just so happen to still be on! I was nine years into living with my Ileostomy, which by this time had easily become a part of my life, an afterthought of sorts. At the time I had just started a new job within a new organization. Previously I was a field manager for a large company. This meant I was away from home quite often, a lifestyle I did not want for our growing family. Missing out on watching them grow everyday was something no job could replace. Life could not be any better!
The disease that entered into my life at this time is one of graphic details. I would be remiss if I did not warn you of images found from a simple Google Search. I thought long and hard whether to include photographs of myself in this article. Due to the graphic nature of the disease itself I chose not to. If genuinely interested, simply ask I and I can share with you via PM.
Shortly after returning home from our trip, I had noticed what I thought to be a large pimple on my back. I remember leaning up against a wall ant it burst. Given in was summer I thought perhaps I developed a pimple from sweating. Then I noticed a small red mark on my right leg. Knowing I had not recently bumped my shin I thought perhaps it was from an insect bite or an ingrown hair. Within a short amount of time, a similar wound appeared on my left leg, back and areas of both my arms. Once seeing a doctor it was initially thought to be a staph infection. I was told to keep the wounds clean and that I would have infusions at the hospital to treat the infection.
Now this is when the tide began to turn. Rather than seeing the infection regress with treatment, it rapidly progressed. If you have already read the article I wrote about my post-op experience from having a large portion of my colon removed, you may remember I did not have any pain control medication immediately following surgery. I had mentioned the intense pain and how I could not imagine anything worse. I can honestly say, to a degree, this was equal or worse. Only difference being, the morning after the operation the doctors were able to manage the pain which lessened over time. With This new disease, the pain only grew stronger over time.
My wife had made the decision one morning that enough was enough and took me into the hospital. There, just as before they thought it to be a Staph infection. At the end of our rope, my wife called a nurse practitioner I had known for many years through the GI clinic. Explaining that we were about to be sent home yet again. The nurse worked her magic, just as in a movie, when I was about to be removed from the Emergency Room she can in very quickly and said I was going nowhere! She pushed back and ensured I was admitted to hospital as there was obviously something else at play and it was not a “Simple Staph Infection”
At last a dermatologist was brought in to assess my wounds. It was determined after two almost three weeks of treatment as a Staph Infection, there was something else at play. The dermatologist reviewed my medical history, assessed my wounds and discovered I had an incredibly rare skin disease called Pyoderma Gangrenosum. Due to the severity of the disease at this point, I was admitted into hospital and placed in the Burn Ward as the nurses specialize in deep tissue wound care.
Below is an image explaining Pyoderma Gangrenosum a bit more clearly;
As I look back to the time I was finally given a confirmed diagnosis, I recall the complete dispare I felt. What did I do that caused all these medical issues? The Inflamitory Bowel Disease, leading to an Ileostomy along with Multiple Sclerosis a few years later, and now a skin desease the general public had never heard of before.
It’s important for me to reflect back to this moment in time. A time at which I had no idea was ahead of me. The doctors and nurses caring for me had no idea what was going to come next. They may not have said the words although their faces certainly did.
Which leads me to a thought. How many of us block out the genuine feelings we had during a challenging experience? For me, recalling these memories to share I did not go in depth at first. I deleted a lot of what I had written so I could take a step back and truly share my experience. What I discovered, is to share this experience properly it cannot be done in one article. I will need to spend time to have conversations with my wife to better document the specifics of what happened and how it happened. I was on a lot of different medications at the time. Due to these medications I have a cloudy recall memory of what actually happened. To put this into context, I had legitimately forgotten the Nurse Practitioner rushing into the ER stopping them from letting me go home, ensuring I was admitted and given a room. It was my wife the other night who reminded me of what exactly had transpired which finally gave me the correct diagnosis.
To ensure I properly share this experience I will be doing some homework to ensure my story is shared properly. As such a life altering experience, for not only myself but my family as well, I feel this necessary to do. Especially for those facing Pyoderma Gangrenosum themselves.