Did you have to eliminate things from your life after surgery?
The fear of eating any forbidden food, the fear of wetting the bag in the shower, the fear of a wafer’s adhesive melting in the hot water of the hot tub, the fear that beach sand may infiltrate the appliance, the fear that sports’ sweat may cause the wafer to unstick, the fear that the bag may fall on a sexual partner while in the throes of passion, the fear of being held up in customs because of a stoma, the fear of being sick on a trip…these are perfectly normal fears as one begins to tame the stoma. But ultimately what exactly is the reality of a new ostomate? What does this new life-with-stoma look like?
The first year, I stayed away from everything they told me to stay away from, but soon, with some temerity, I started trying different things. I registered for circus school where I’ve been practicing aerial acrobatics ever since. I made sure my trainer knew about my stoma so we could avoid moves that were uncomfortable for my stomach. I’ve also tried most foods forbidden to ostomates like popcorn, nuts, dried fruits etc. I’ve suffered the consequences with lots of leaks and stomach aches. The only off-limits food I have absolutely avoided is corn in case of a blockage. I sincerely believe that each individual reacts differently and that, in the beginning, trial and error is the way to go.
After the creation of my colostomy, I had to mourn sleeping on my front and getting massages in my stoma area. I’ve gone back to dancing ballet but I live in fear so unfortunately I dance with that fear.
For me, it’s been the opposite. The operation helped me gain more freedom both for eating and on a physical level. For food, I was able to go back to eating normally and that has done me the most good. For activities, I was always so tired, exhausted and in pain before surgery that I didn’t practise many sports. After the operation, I started retraining, doing things with my friends or hiking in the mountain without worrying about what might happen. I almost only see the positive results of my surgery.
After my surgery, like everyone, I had a period of adapting in all spheres of my life. For food, I risked eating things that I didn’t permit myself before or were proscribed because of my Crohn’s Disease. But after many tests, I finally eat everything, even the foods that were so off-limits before (salads, lots of vegetables, tartars). However, I don’t overdo it with cheese or sugar. In spite of all expectations, I continued my activities including Tae Kwon Do, foot races and obstacle courses like Spartan Race®. I even doubled the number of competitions I entered. That would be my pig-headed nature. For travelling, I have never felt so free as I do with my stoma. Before, I always had to think about where the nearest bathrooms were. Now, I almost never think about it even though I go several times a day. In short, for me a second life has opened up to me and I’ve decided to take maximum advantage of it with as little unnecessary stress as possible. And especially I wanted to prove to myself and any naysayers that I could like a normal life.
In the end, the reality is that a stoma often allows people to live a normal even richer life. For some, no foods are off-limits, for others, trial and error is important. Trying foods that are not recommended one by one in a reasonable way is no doubt best for identifying things to limit or avoid altogether. Generally, if the ostomate has chosen the best equipment for their stoma and their skin type, leaks will be limited. Appliances are designed to seal hermetically, to be water- and heat-resistant. So don’t avoid sports – they-re one of the best was to keep in shape and stay that way. It’s the same thing for travelling or intimacy, respect your limits but keep in mind that your stoma should help you live a full life not prevent one.
English translation by Jane Loignon