This post is extremely personal and difficult for me to articulate. In terms of rawness, my other posts have been skimming the surface. This is as raw as a fresh wound that has been deeply cut by a sharp scalpel. This is as personal as going to the bathroom in front of a large audience. If that doesn't seem too daunting, imagine your most intimate moments, the things you do when you know that no one else is watching being broad casted live for everyone to see. That is how personal this post is about to get.
I have been debating whether or not to post this for quite some time now. I decided to share this personal experience because my blog is about the raw reality of my life with Crohn's. It is so important to me that people really understand the absolute truth of how difficult it is to live with a chronic illness. For me and most, having your colon removed is a life or death situation. Having surgery and getting an ileostomy has become a double edged sword. While I finally am relieved of my Crohn's symptoms, not one doctor or nurse even remotely prepared me for the new set of problems that were about to ensue.
Have you ever been so frustrated you needed to scream at the top of your lungs? Have you ever been so sad that you cried until your head throbbed and your eyes couldn't even produce any more tears to fall down your face? For many of the weeks following surgery I experienced these emotions, because learning how to live with an ileostomy is one of the most difficult things I have ever had to wrap my brain around. Learning how to live with a piece of my insides now on my outside is one thing, but having poop involuntarily flow out of something that isn't my butt is entirely another.
Not only was it very difficult to see this new and unusual change in my physical appearance, but the process that goes along with it to keep the poop contained and off your skin is very taxing. It was even harder when I began to encounter abnormal issues almost immediately after surgery. It started with a burning sensation around my stoma that intensified after eating. As the weeks passed, the pain quickly culminated into a trip to the emergency room that landed me back in the hospital for four days. After many observations it was concluded that I had developed something very rare. So rare that out of the millions of people who suffer from IBD, only 2% of that population gets it. It is called Pyoderma Gangrenosum.
PG is a serious skin disease in which a painful nodule breaks down to form a progressively raging ulcer around the stoma. The PG I had was associated with the trauma from surgery. Just when I thought I couldn't experience anything more painful than I already had, PG sneakily came along to prove me wrong. Sure the ulcerated parts of my insides were eradicated, but now I had ulcers on the outside of my body. Getting a bag to cover my stoma and stick to my skin with an angry ulcer is more excruciating than I will ever be able to put into words. Due to the fact that I could not get a good seal because of the ulcers, stool leaked out constantly as I had to change my bag up to five times on most days.
Anxiety, frustration, and pain consumed me as I prayed for an end to this overwhelming issue every single day. The whole purpose of surgery was so I could finally eat without pain. A different kind of pain was now associated with food, as the entire area around my stoma felt as though someone ignited a fire to my skin every time I ate. I had to stomach six steroid injections in my ulcers, on my stomach, on three separate occasions. Even though this surgery saved my life, I feel as though I am trapped in a nightmare where my ostomy plays the role of Freddy Krueger.
The only thing I can take solace in is that my ostomy is temporary. I started a new biologic called Simponi about a month ago to heal the PG and keep the Crohn's in remission. I am hopeful that the medication will kick in soon and this problem will be completely resolved. Once that occurs, I will have another surgery to put the stoma back in my body where it belongs. Although I am very excited to have my body return to its natural state, I still have to go through another surgery. There are no fancy words to convey how much it sucks to watch a four inch incision heal after four months, only to have it sliced right back open again.
It isn't easy for me to be this open about these embarrassing issues that knock down my confidence and make me feel completely damaged. Through all of this my self esteem is a work in progress. I try hard to keep reminding myself that these scars on my stomach are a symbol of my substantial strength. I am this open because I need people to know that IBD is an auto immune disease that affects more than just your digestive system. It affects your entire body, mind, and soul.
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