Lessons I Have Learned From Living With A Stoma

When you have Spina Bifida, going to the bathroom can be difficult because, a lot of the time, your bladder and bowel muscles do not work in the way they are supposed to. There are surgeries that can help make going to the bathroom a little easier, but they are not cures by any means because your doctor can’t fix damaged muscles. You can manage bladder and bowel problems in many different ways, and not everyone will do the same types of things, and that is okay because the most important thing is that you are able to go to the bathroom. I got my first stoma when I was seven years old to help me manage my bladder issues, and got another one after school to help manage my bowel problems. When you tell people that you have a stoma, sometimes people struggle to see the positives of it and only see the negatives. It is sometimes frustrating to have a stoma because you have leaking problems that you wouldn’t have without one. I have days when I wish my stoma would disappear, but I am so grateful for it because I have independence that I wouldn’t have without my stoma. My stoma frustrates me on a daily basis, but it’s not all bad and has taught me a lot of important life lessons. What has my stoma taught me? In this post, I am going to talk about a few lessons I have learned because of my stoma.

It taught me not to care what people think– When I make a medical decision, I try not to let the opinions of others influence my decision because not everyone will understand the challenges of my disability, and sometimes will be horrified when you tell them that you want a stoma. If there is one thing that my disability has taught me, it’s that some people lack understanding, and you have to learn to not care what other people think. Everyone is going to have different opinions on whether they think I should have a stoma or not, and that is okay, but the only opinion that matters is mine because I have to live with it. I have been made fun of for my bowel issues more times than I care to admit, and you couldn’t come up with a bowel joke that I have not heard. As a child, it really hurt when I was having a bowel issue, and people made fun of it, but as I have grown older, I have learned to just ignore it and not care what others think.

It taught me how to plan like a boss- When you are disabled, sometimes it can be difficult to hang out with friends last-minute because managing a medical condition requires more planning. People sometimes forget I have a medical condition and think that because I am unemployed that I have all the time in the world and can drop everything to hang out with you. I am able to rearrange my schedule more easily than someone with a job, but it can still be difficult to hang out with people last-minute because managing a stoma requires planning. I wouldn’t consider myself a big planner, and I do a lot of things last-minute, but when it comes to my disability, I am a great planner. My stoma has forced me to learn how to plan like a boss because I have to make sure that I am prepared for a complete disaster when I go to an event that it not in my home and has food. Disabled people often have to plan more than non-disabled people and can’t do things spontaneously like non-disabled people can because we have things to consider that non-disabled people don’t.

It taught me to appreciate my body in a different way– I have two stoma’s on my lower abdomen that help me manage my bladder and bowel problems independently. My stoma’s have made my life easier, and I have no regrets with getting them, but they are just two little red holes on my lower abdomen and are not the most visually appealing things you will ever see. Body confidence can be more difficult when you have a stoma, and it has taught me to appreciate my body in a different way. I am not obsessed with my physical appearance like some non-disabled people, because when you see two holes on your stomach every single day, it’s more difficult to love your body. My stoma has taught me that physical appearance is not everything and to appreciate my body in a different way because you get a stoma to make your life easier, not to make a fashion statement.

It taught me how to listen to my body- Most people eat healthy and exercise because they don’t want to get diabetes or increase their risk for cancer. I eat healthy for those reasons also, but because of my stoma, I am forced to develop healthy habits or face serious consequences. I don’t have to measure everything I eat like a non-disabled person who is trying to lose weight would because my stoma will leak if I eat too much of the wrong thing, which will remind me to not do that next time. I don’t struggle with not being able to stop eating cookies because these types of food can cause constipation, which will be much worse for someone with Spina Bifida who has bowel issues. Non-disabled people sometimes struggle to eat healthy but because of my stoma, I am a pro at listening to my body and actually want to eat healthy. There are not a lot of positives to living with a disability, but it has helped me be more in tune with my body because sometimes I am forced to restrict myself.

When you tell people that you have a stoma, sometimes they are horrified and will tell you to get rid of it or get a second opinion because some people can’t get passed the looks of it. My stoma is not perfect and doesn’t cure bladder and bowel problems by any means, but it can make it a little easier to manage them. Some people with my disability do not have a stoma because not everyone wants one, and it’s something that I have chosen. A stoma requires constant maintenance, and there are a lot of negatives to having a stoma, but the positives far outweigh the negatives. Before I had an ACE (Antegrade Colonic Enema), which is the stoma I have connected to my bowel, I struggled with painful constipation that I couldn’t get relief from without help, and people weren’t always available immediately, so sometimes I was in pain for hours. A stoma is frustrating sometimes, but it can improve your health and give you your life. These are a few lessons that I have learned from living with a stoma, but not everyone is going to learn the same lesson because some people may have a different type of stoma. What lessons has your stoma taught you? If you liked this post, please leave a comment below and share it with your friends.

---

Subscribe And Never Miss A Post