May is IBD awareness month. Crohn’s disease and Ulcerative Colitis are the two diseases that are collectively referred to as Inflammatory Bowel Disease (IBD). These diseases (which are not to be confused with IBS) are serious systemic autoimmune diseases that primarily affect the digestive system (usually the large intestine). These are their stories (cue Law and Order 'bum-bum').
In December of 2015, I lost my large intestine to Crohn’s disease and now have an ileostomy and an ostomy bag. I had a surgery called a ‘total procto-colectomy.’ This means that my entire large intestine and rectum were removed, the last part of my small intestine (the ileum) was pulled through an incision in my abdominal wall and sewn to my skin on my stomach to create a 'stoma', and my anus was permanently sewn shut. Those of us in the ostomy world like to refer to the latter part of this operation as a ‘Barbie-butt’ surgery, for obvious reasons.
Despite the little bits you may have gleaned from ill-informed jokes about them on movies or television, living with an ostomy is not all that bad and in fact, actually has a couple of perks. First off, I have not had to sit on a public toilet seat for over 2 years. That alone is almost worth having an ostomy. Sure, lots of people can pee standing up, but only a select few can rock the number two while standing. Other perks: I only pass gas when I want to. I always have a bag of poop on me if I want to light it on fire and leave it on someone’s doorstep, and when people use the phrase “Opinions are like assholes, everyone has one,” I get to explain how not everyone actually has an asshole, which is usually pretty fun.
The biggest perks though are having a level of health stability I haven’t known since I was a kid, a huge reduction in pain and an even bigger increase in quality of life. Due to the severity of my Crohn’s disease and my resistance to medical therapies, it was fairly evident that I would eventually require surgery years before it actually happened. My doctors would regularly tell me that it was something I should prepare for. For a long time, I tried to tell myself that they were wrong; that things would eventually turn around. I was convinced that losing any of my guts meant that the disease was winning and I felt determined to not let that happen.
Eventually, the close calls and complications became too much. Not only did my disease get to the point where I could not handle it anymore, it was regularly compromising my safety. I was spending all my time either in the hospital, on the verge of hospitalization, or chasing after recoveries that never quite came. I won’t get into too much detail in this post, but eventually things got really bad. After a particularly long, treacherous flare-up and a bout of sepsis along with a small handful of other complications, my doctors strongly recommended I had surgery before it was too late. They felt that if I continued the way I was going, it was only a matter of time before I ended up having my intestine hacked out in an emergency room in a potentially life-threatening scenario. I would have a much better go at things if I got it ripped out before it got to that point, they thought.
On my way to Seattle to meet the surgeon. I was pretty heavily medicated during this time and was in too much pain to sleep most nights. Hence the strung-out, kinda crazy look. Kim was definitely having a better time than I was.
I did not take the news well initially. It was what I had dreaded hearing for almost fifteen years. I was losing. I was sure of it. With Crohn’s disease, surgery is not a silver bullet. Crohn's disease is incurable. In addition to the intestinal issues, there are many non-intestinal manifestations of the disease that can affect multiple body systems. These do not always resolve with surgery. Also, 80 percent of Crohn’s patients have a recurrence of intestinal disease at some point in their lives, further up their digestive tract. This can sometimes lead to more complicated surgeries and outcomes in the future. These statistics did not have me feeling very reassured about the prospect of surgery.
Luckily, in the weeks leading up to my colectomy, I found a lot of support through different online communities and became exposed to many people for whom surgery had allowed them to get some control back in their lives. They had gone through it all, and they were doing well despite the statistics. Many of them were fellow IBD’ers. But, there were a lot of others as well. For some of them, similar to my situation, their surgery was a long time coming. Others went into the hospital unaware of what was wrong and later woke up with no large intestine. They had no real say in the matter.
There were people who survived colon cancer, people who had life-threatening obstructions, people who were in accidents, and more. For the most part, all of their lives were better because of their colectomies and they were there to reassure others that everything could be okay. In addition to this bit of reassurance, my health had not really rebounded much after my previous hospitalization. I was experiencing complications that, coupled with my inflammatory arthritis, made it exceedingly difficult to care for myself or live in a dignified matter. I was finally ready for something different and being out of medical options, surgery was my only remaining choice.
Hanging out in Seattle with my mom the day before my surgery.
My recovery took a long time and to be honest there were a couple of hiccups in the process. But, ultimately this surgery was a success and has been one of the best things to have happened in my life. My health history has always been complicated and I still have a lot of issues due to other autoimmune diseases and medication side effects. However, three years ago, I never would have imagined that I would be able feel this good again and am I glad to be rid of that diseased hunk of garbage. I wish I would have done it sooner.
The most important thing for you to realize about ostomies is that the people who have them have been through some crazy shit and thanks to their surgery, they survived. It may seem like a silly or taboo subject to people who don’t live with them, but many of us are proud of our ostomies. We are thankful for them. We are alive because of them.
Last week, enjoying my partner Kim's graduation from her master's program
I hope this article helped to increase your awareness about both IBD and ostomies in some way. I did not get too much into detail about many of the effects and complications of IBD in this specific post. I will likely write more about my experiences with the disease at a later time. Meanwhile, feel free to ask me anything about IBD or ostomy life and if you are an ostomate yourself, please feel free to say hi in the comments.
If you would like to read more of my work about chronic illness and disability, check out this story I wrote about living with ankylosing spondylitis:
Walk Like a Normal Person: a short-short about living with AS
