Long before I had an ostomy bag adhered to my own abdomen, I’d heard of the mythical ‘poop bag.’ And while I didn’t understand what it meant in terms of surgery or potential permanency, I understood that somehow poop came out in a bag instead of the normal exit into a toilet. When I was about 8, a teacher at my elementary school had a son who needed the unspeakable ‘poop bag’ and the news spread like wild fire through whispers and stunned expressions. None of us knew what it really meant, but we did understand on some basic level that it would be an immense change for the boy who had to have one.
Sometimes I wonder who was the genius who sat down and came up with the GI terminology. First of all, gastroenterology does not contain an ‘i’ so GI doesn’t make a whole lot of sense. But throw in terms like ‘rectal stump’ and we’re all set - we officially have the oddest language paired with our intestinal diseases. An ostomy nurse recently informed me that my output in the bag was not poop, but instead deemed ‘effluent’. This made me laugh for two reasons - 1) it sounds like a pretty name for something gross 2) it is terminologically incorrect to say ‘poop bag’, I have an ‘effluent bag.’
This thought brought me to a larger ironic one - by the time my IBD was finally understood to be something horrible and debilitating, I had my surgery to have my ostomy to make everything sunshine and rainbows. When it was recognized for what it was, the organ was removed. Isn’t it sad that in order to get the sympathy and understanding of the severity of my illness that I had to have a five foot organ chopped out and a bag hanging off of me? It wasn’t ‘good enough’ to explain to people that I had a serious chronic intestinal disease, it wasn’t ‘good enough’ to display the medications, it wasn’t ‘good enough’ to spend all my time in hospitals - because I still looked fine, because I didn’t look any different than the next kid. Now I have the shock value - I can whip out terms like ‘loss of an organ’, ‘7 hour surgery’, ‘ileostomy bag’, ‘blood transfusion’ and on and on to get the understanding that had escaped me for so many years. And while that’s useful now, it’s ridiculous that it had to come to surgery to get that empathy. In a million ways, having an ostomy for me is much better than being ill with my IBD. I don’t want to be pitied for having an ostomy, that is not the point. But I realistically know that many people who do not understand IBD or illness will use their pity expressions when they look at me, I will be the one that they whisper about, quietly and ignorantly explaining to someone that I have a ‘poop bag.’
For all of us, IBD is something that happened to us - at least in the beginning. For me before my diagnosis, it was sudden pain and blood loss and was something I could not control. But IBD does not have to be something that continues to happen to us, at least not in terms of how we understand or relate to it. My ostomy was not something that happened to me, it was something I asked for, it was something I wanted - and is something now that I am grateful to have. While my parents fret about why I had to have IBD in the first place, my thoughts are elsewhere - they’re past the diagnosis and the years of painful treatments, because I will not let my illness be something that continues to batter me. For me, deciding to have the surgery was perhaps the first real choice I had in my IBD history and it was one I took seriously. It was the right choice for me, and it’s exciting that I made a real choice in combating the disease that had riddled my body for so long.
In the time to come, I won’t frown if someone refers to it as a ‘poop bag’, I won’t correct them into repeating ‘effluent bag’ after me. I won’t snap at the people who give me the pity look, or judge the people who only understand my medical past if I have to use the shock value terms. I won’t get annoyed when the computer highlights ostomy as a misspelled word, or get frustrated if I have to explain it to someone. And that’s all because, like it or not, IBD and it’s treatments do not have the same high profile exposure as some of the other chronic illnesses do. I can’t get upset about people not understanding if I’m not willing to be on the front lines spreading awareness. IBD sufferers deserve to be recognized long before surgery is needed, and that is something we continue to work towards.
Once the IBD vault has been opened, people find that so many people are affected by the disease. We need to swing those vault and bathroom stall doors open if we’re going to transform the understanding the public has about IBD. I know it can be done, I have seen improvements in the last few years. And swinging door by swinging door, we will be recognized and we will find a cure.
Jennie
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