Heat and Managing my Ostomy: Then and Now

I wanted to expand a little more on the post I wrote about how much I hated having an ostomy in the heat. I thought I would share a little background about what I did with my first ostomy during spring/summer months vs how I handle it currently.


When I had my first ostomy, I was only 16 years old. About a year after it was made permanent, I began to despise it with everything in me. Even though I had the ostomy surgery in January, it was only supposed to be temporary. But in May of that same year, my Jpouch was removed and I became a permanent ostomate. Following that surgery (and for a while prior to it), I was spiking 105-106 fevers. I was just so sick so the ostomy was a relief initially. Even though I still needed to be on IV antibiotics for almost a year following that surgery, having the bag took the urgency out of the picture. And there was just so much I could handle at one time.

I had a few good months following that surgery before the fevers returned. Even though I had to take the year off of high school, I was still allowed to be part of the mock trial club. I didn’t go to any of the actual events but I was able to be at the school, prepping for upcoming debates, and socializing. It was not only a good distraction, but something I really enjoyed doing. I always toyed around with the idea of becoming a lawyer so being a part of this club was really good for me. It also kept me somewhat connected to the people I went to school with.

I changed schools in the beginning of 10th grade which was hard. More so because I was absent a lot which isn’t too great when you are trying to build friendships with other students who have been together since pre-K. By December of my junior year, I was down to two classes (that I went to with a pic line and drain that went down to the floor) but eventually had to stop going all together. So, being able to be a part of this club at the school helped me to meet a couple people who were upcoming juniors since I was now in the grade below.

Anyway, sorry I got a little off track there.

My point was that the first year or so of me living with an ostomy was also spent recovering and trying to get my health under control. It didn’t matter what the weather was outside because the only time I really left my house was for doctors appointments and little errands I would do with my mom. When I was 17 and things had calmed down a bit, summer started to really get me down. I was so self conscious. I would count down the days until the cooler weather was upon us. I also would begin to really think about what a difference it was for me having an ostomy in the summer vs before. Summer had always been my favorite time of year because I loved my summer swim team. I looked forward to it all year and now, all of a sudden, the pool, beach, and everything I always loved and couldn’t get enough of was the worst thing to me.

It wasn’t fair. I was only 17 and this was how I was supposed to spend the rest of my life. Worrying about my skin, not able to wear nice bathing suites and enjoy being in the water with my friends and family. I was always so tan during the summer and always so happy. But in the blink of an eye, the beach was something that had to be forced on me, and I rarely went to the pool because it reminded me of my team and how I could no longer be part of it.

I spent a lot of time watching television and stuffing my emotions with food. As you can imagine, the weight gain did not help the situation.


I still don’t like the summer months. I feel the worst during them and I do still look forward to the cooler weather. But I no longer dread it. It is a part of the year that I cannot escape so there is no point in stressing over it. Instead, I recognize what about this weather makes me feel badly and do whatever is in my power to help the situation (or keep me away from it if possible.)

I try to limit my time outside when it is really hot. Most of the things I need to do (and want to do) are done inside. I used to take my computer to other places so I wasn’t stuck inside all of the time but quickly saw it was more trouble than it was worth. All it did was make me feel miserable when I could have been at home where I am comfortable and felt the best.

I also try very hard to drink more when it is warmer out. Doesn’t happen everyday but it is definitely a thought.

The last two summers have been the first years where having an ostomy did not make me angry. I went in the lake for the first time with my ostomy last summer (for a very short time) and saw that it was nice to take a dip but it wasn’t worth the potential skin issues that came with laying there with a wet appliance on. But it was okay. My health was most important and if this was what I needed to deal with to be healthy, then it is worth that sacrifice.



  • Sherri

    It all makes me so very sad….:(…but also amazed at how much has transpired for so, so long….and how strong and incredible you are and our family is. Love you my GF…<3

    • http://www.internalbasis.wordpress.com Internalbasis

      Hi Marisa,

      I have just searched for “how to not internalize feelings” on google and finally found your blog. My native language is not English so sorry for my mistakes in advance.

      I didn’t really know so much about your disease so your blog literally widened my horizons.

      I had a disease a couple of years ago which shocked me. I was diagnosed with precancerous cells on my cervix at the age of 27 – it is very common but I felt terrified. I have been treated with a cell-modifier for 6 months (didnt help) and had biopsies which was not just painful but forced me to stay in bed for a couple of days and suffer from the blood and pain. I felt miserable a lot. What helped me is the anti cancer diet which provided a great nutritional balance. It was very strict but helped me to heal my body at cellular level (My test was negative this april after 4 years positive test history).

      What I am trying to say is that even though my problem was just temporary I can relate with you. I understand your questions and the ways you would like to explore the answers.

      My advice for you is to never try to measure your identity across your disease but from the REALIZATIONS that you have gained from its manifestation. I believe that everything happens for a reason but we need some time, and most importantly, wisdom to figure out the meanings of the happened things.

      You are a wonderful person and if I lived near you, I would definitely pop in for a nice green tea (best ever). :-)

      With love,
      Krisztina (Internalbasis)

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