Testimony - Living with an Ostomy
Although hundreds of thousands of people live with stoma in Spain due to diseases such as Crohn's disease, ulcerative colitis and bowel cancer or prostate cancer many of us do not know how they affect a person's life.
In the case of an ileostomy, the small intestine is removed out of the abdomen to release the waste into the pouch and is the result of surgery when the large intestine has been perforated or blocked so much that it needs a rest.
Colostomies resemble an ileostomy, except that the large intestine is removed. And finally there's the urostomy.
The urostomy, as you can probably guess by name, releases urine into a pouch directly from your kidneys. It is often used for people who cannot urinate through the bladder. For many, it's a life-changing. You go from normal life to having to relearn how to go to the bathroom. You have to adapt mentally and obviously it takes some time to accept the situation.
Stoma pouches are scary. And it must be admitted that, for anyone who does not live with an intestinal disease, it probably is. But once you learn more about it, you'll realize there's nothing to be afraid of.
When a person thinks of a pouch of stoma, tends to think about the negative aspects rather than the positive ones, the reality is that they can save lives.
According to the testimony of a person who lived with a stoma pouch for ten months, "if it wasn't for my stoma, I would be dead. I was given the stoma pouch when my colon was half an hour away from exploding due to the severity of the disease. They didn't give me time to think of a stoma pouch since the surgery was an emergency. I woke up to find something in my stomach that I didn't know anything about. But over time, I got used to it. Before the stoma pouch I suffered chronic constipation. I spent days without using the toilet and lived on laxatives and fiber-rich foods. My diet was incredibly strict, I bled a lot and, as a result, I had too little iron and my weight was too low. Having the stoma pouch took all this away from me. I could use the bathroom without pain. I wasn't swollen. I could eat what I wanted and when I wanted and I got rid of the laxatives and the most important thing is that I regained my weight and saved my health.
Obviously I went through difficult times, when I was a child, appearance had always been a big problem for me. I convinced myself that my stoma pouch would ruin my relationship and that I would no longer be attractive. But it didn't. My partner stayed and nothing changed. I can't speak for everyone. I know that everyone is different and that people treat things in different ways, but for me, my stoma pouch changed my life in a brilliant way. And I think it's very important that people know that. Recently, I saw an article describing stoma pouches as a "misery". The article discussed a new breakthrough in treatment, which was said to have "prevented" patients from undergoing surgery. Of course, this is brilliant news: no one wants to have surgery just for the sake of it. But calling life with a stoma pouch a "misery" is a total insult to all ostomates. For many, a stoma pouch is not an option but a way of life that occurred due to a life or death situation. For that, we should be grateful, not call it "misery". Personally, I would choose to use a pouch forever instead of losing my life. Along with "misery," terms such as "endure" and "convenience" are often expressed when we speak of stoma pouches. That doesn't reflect reality. While yes, at first the stoma pouch may be something you "hold on to", it eventually becomes something natural and you forget about it and curiously enough, going to the bathroom several times a day or suffering horrible stomach cramps and bleeding daily due to chronic constipation is one more inconvenience than emptying a stoma pouch just a couple of times a day. Today, stoma pouches are common in both young and old people, and we must educate ourselves about them. Hundreds of thousands live with inflammatory bowel disease and are affected by cancer or accidents that may result in the need for a stoma pouch. People need to know more about them in a positive way, not only so that they are aware of the procedure, but also to demonstrate to those who may one day need to live with a stoma that is not as frightening and miserable as people think. It's worth living a disease-free life. So, please, as someone who has lived with an intestinal condition and a stoma, stop using such negative words to talk about it.