I was 9-years-old and lived with severe Inflammatory Bowel Disease (IBD) for seven months. I ran out of medication options to help get the inflammation under control and needed to have my colon removed in a procedure known as a subtotal colectomy. That left me with an ileostomy which created a new way of eliminating poop from my body.
Since then I’ve lived my life wearing an ostomy bag, something you rarely hear people talk about in public, so I want others to know about life as an ostomate. These are six things I want you to know about my life with an ostomy.
1. It’s okay to have mixed feelings.
I both wanted and didn't want this surgery at the same time because I knew that it might mean living with an ostomy forever. I didn't know what it would be like to look at my body after the surgery, and worried that my stoma would get damaged easily. I worried what others would think if they knew about it. Would the kids at school tease me? Would they make fun of the fact that I was different? This surgery is a huge life-changer that has both positives and negatives. It's okay to think and feel both sides of this situation.
2. It can be embarrassing.
There's no shortage of embarrassing things that can happen when you have an ostomy. Leaks are one of the major problems with having the bag, and they can happen at the most inconvenient times possible. Such as when you are stuck in major traffic jam and have nowhere to go, or when you're in a public place and forget your ostomy supplies that day. "Releasing gas" or as my friend Jen puts it, "stoma squeeks" are another problem. They usually happen the moment things around you turn silent. There's really nothing you can do to avoid this from happening, so it's best to develop a sense of humor when it happens.
3. There is no shame in having an ostomy.
In 2015, an anti-smoking campaign by the CDC featured a commercial with a lady talking about her colostomy that she had due to developing colon cancer from smoking. Her opinion portrayed ostomies as being disgusting and essentially something to be ashamed of. There are a lot of reasons why a person might need an ostomy, and most of them are for life-saving reasons. If my colon hadn't been removed, I could have died. Being able to live is much more important than the inconveniences of having an ostomy bag.
4. An ostomy doesn't change who I am.
It changes how my bodily waste comes out, that is all. I am still human and have feelings. I still get worried about what others might think. I still have dreams and fears. I am still capable of most of everything that I was before I had the surgery (no more dodgeball thankfully!).
5. I don't mind you asking questions about it.
I'd rather you ask me questions about an ostomy than to shy away from me or avoid me. I don't mind talking about it because it brings more awareness to something that no one really talks about. I never even heard the word "stoma" before 2012, when both my grandfather and I had to have ostomy surgeries (my grandfather is stage 4 bladder cancer survivor). Since then, I've met so many kids who live with an ostomy, and I've helped a few who were about to be going through with the surgery. It's only through talking about it that we can build awareness and acceptance.
6. I don't regret ostomy surgery.
Going into the surgery, we had thought that it was going to be a temporary solution until they did a procedure known as a J-pouch. I think in the back of my mind I knew that this ostomy might be forever, and my thoughts were confirmed when a few months later I was diagnosed with Crohn's disease. I'm okay with everything that happened. I'm proud that I was able to accept my situation and turn it into a positive experience by donating my colon to research to help find a cure for IBD and raising money for Sick Kids Foundation.
Life goes on after an ostomy. It's an adjustment, but you do go on to make a "new normal." Some days will be completely frustrating, but when you remind yourself of what life would be like without it, there's really no choice other than to carry on. My ostomy reminds me daily that I am a survivor.
This post originally appeared November 6, 2015 on Jacobs Healing Rooms.