This weekend I did something I haven’t done since I had my most recent ileostomy surgery at the end of July 2011… I got in the water!
The summer time has always been a difficult one for me for a variety of reasons. For starters, it was always when I was the sickest. No idea why but it just seemed to work out that way which was awful for me because I was a competitive swimmer and being a part of my summer swim team was what I looked forward to the entire year. And then as I started needing to undergo body altering surgeries, the fact that the summer obviously means needing to wear more revealing clothes made me feel a lot more exposed since I couldn’t hide my scars, drains, tubes, or ostomy behind layers of clothing.
Ever since I was a little girl, I always loved the water. My parents would tell me stories about how I would be the only kid in the pool when it was a frigid day thus forcing the lifeguards to work late (I became their worst nightmare! J ) Anyway, as I got older and began to take up the sport in a competitive way, I grew even more in love with everything about swimming and what it represented. I loved the feeling you get after a great work out. I loved how the water seemed to wash away most of the worries of the day. It seemed like for the two hours I had practice, all that mattered was focusing on the sport. Swim meets would usually take up my weekends and a lot of my friends were from my team since we all spent such an inordinate amount of time together. Swimming was my life and I could care less that I had to give up going out on many weekends because I had to wake up at 4am for practice or was away at a three day swim meet.
Being a swimmer was who I was and it defined me in many ways. I had to give up a lot in order to compete at the level I wanted to, which was especially true after I was diagnosed with ulcerative colitis. I worked my butt off to not allow the disease to take this away from me…. and I lost.
Getting in the water is a huge trigger for me because it reminds me of what IBD has taken from me. It is also especially challenging now that I have an ileostomy. I haven’t wanted to “rock the boat” and potentially do anything to affect my skin or cause further damage to myself or my body. The summer heat already doesn’t help my skin so the thought of getting in the water made me feel like I would be setting myself up for failure in a way….or that I would be better off indoors, with the AC, and counting down the days until the cooler weather returns.
But I realized this past weekend that that can’t be how I live my life. When I was at my friend’s house last month, I started looking at wraps, special suites, different appliances, waterproof tape and a bunch of other specialized things for ostomates during this time of year. It was great to see that there were options out there and I never would have looked had it not been for my wonderful friend, Mal.
However, it hasn’t even crossed my mind to look at the websites she showed me again, or even contact her about some of the things she has sitting in her house. It is too much for me right now.
A few months ago, the fact that I haven’t been able to “follow up” (for lack of better wording) with some of the things my friend showed me would have really bothered me. I would have felt like I was failing to be able to do things that were essential to my overall well being. Or that there was something wrong with me for not just having my second ileostomy, ordering all of the things I needed to, and carrying about my business as if nothing ever happened.
I now know how detrimental that way of thinking is. The fact that I was able to get in the water was a HUGE deal to me. I wasn’t even able to be in there for very long but I got in and got the bag wet, saw I could, and that everything was okay. I know that in and of itself was a big deal and a stepping stone towards me doing even more as I feel comfortable.
I am really starting to learn how to adapt to life with an ostomy. It isn’t perfect by any means but I am learning to adjust. I also feel like I understand my body a little more now which makes me feel empowered. It is important for all of us to figure out small ways to keep the things we love in our lives as best we can, despite the challenges we are facing.