When you have Spina Bifida a lot of the time your bowels do not work properly, and there is no surgery that can have that will fix them. There are a lot of ways you can manage bladder and bowel problems with Spina Bifida, and not everyone will manage them in the same way because not everyone will want a stoma, and some doctors may not know how to make one. I live with a stoma called an ACE, which stands for Antegrade Colonic Enema, which is a little hole I have on my lower abdomen that gives me the ability to have bowel movements independently, which is different from a stoma bag. People sometimes think that when you have a stoma, it cures you and everything works great all of the time, but that could not be further from the truth because a stoma only helps make it easier to manage bowel problems, but doesn’t fix your bowel function. I am grateful for my stoma because it allows me to be able to have bowel a movements without needing assistance, but it’s not perfect by any means and is more frustrating than the stoma I have for my bladder. In this post, I am going to talk about some of the realities that you may not know about living with a stoma connected to your bowel.
It leaks every day- My stoma gives me the ability to have bowel movements whenever I want and helps me prevent constipation most of the time, but it is just a little hole, I have on my lower abdomen that is not plugged and is free as a bird which means you deal with a lot of leaking because anything that goes in your body can come out of your stoma. Most days I have a normal amount of leaking and is not too serious, but if I eat something with a lot of sugar or anything with carbohydrates, it can be disastrous. There is no diet that can completely prevent stoma leakage unless you want to get rid of your stoma, which is not a solution because, at the end of the day, your bowels still don’t work, and you still have to find a way to go to the bathroom. It is hard to manage a leaky stoma because it leaks almost daily, and you never know what each day will bring.
Clothes get ruined sometimes- When you have a stoma that leaks constantly clothes sometimes are ruined because even if you have it covered which I almost always do it can leak through your clothes and ruin them. As a disabled person, I sometimes need to do a couple more loads of laundry than a non-disabled person who doesn’t have a stoma would because sometimes I have to change my clothes multiple times a day. I keep my stoma covered most of the time so I don’t have to change as many outfits, but a gauze only does so much because if my problem is severe enough it will go right through my clothes, and I will have to do a full outfit change. I am constantly rinsing clothes because of my stoma but if I am not able to deal with something right away sometimes clothes get ruined, and I have to throw them out. I do what I can to save my clothes but at the end of the day, I don’t have complete control over stoma leakage because even if I am doing everything right sometimes my body won’t agree with a certain food, and I will have a much bigger problem than I ever planned for.
I get a lot of anxiety at functions with food- When I go to a social gathering, I often will eat less than I normally would or not at all because eating around other people especially if I don’t know you very well gives me immense anxiety. I never know how my body is going to react to the food that is being served because sometimes I have obvious problems that some people are quite rude about because they do not understand and think that if I ate a little better, I wouldn’t be having these issues.
Sometimes I get painful rashes- People sometimes don’t understand why I am more concerned with the amount of carbohydrates I consume and think I am eating less because I am on some kind of die but it’s not like that at all and I eat that way because I have to. When I have a leaking problem it’s more than just changing a couple of outfits and if I leak enough and can’t get it to stop, I sometimes will get rashes that bleed which can be very painful. I have moisturizing cream that I can sometimes put on my skin that gives me some relief, but I will not get complete relief until I stop actively leaking. As a disabled person, I am not bothered by the fact that sometimes I have to change my outfit, but the painful rashes I could totally live without and is the reason I eat less candy than most people because I want to avoid this type of pain.
You don’t always come prepared- Whenever I leave my house and know that I will be gone a while, I bring a couple of extra supplies just case disaster strikes but what a lot of people don’t understand is that it’s hard to know how many problems I am going to have that days because not every day is the same and sometimes I am not as prepared as I thought. I can’t tell you how many times I have gone places where I thought I had enough supplies to get through the evening but didn’t because I had a much bigger issue than I was expecting. Stoma problems sometimes make it so sometimes I have to leave early but it’s not necessarily because I didn’t pack any supplies and most of the time, I did have supplies and it just wasn’t enough.
When you have a stoma connected to your bowel it gives you a lot of independence but it’s constant maintenance because you have to figure out what types of foods trigger you and avoid them as much as possible. As a disabled person I go through more laundry than most people because of my stoma but needing to change my clothes a couple of times a day is not the worst part of my disability and it’s the painful rashes and the unpredictability of a stoma problem. There are a lot of foods that doctors say you should avoid or minimize because it can trigger your stoma but not everyone will be triggered by the same types of food and sometimes the things doctors say to avoid don’t bother you. My stoma has given me independence I normally wouldn’t have but it’s not a cure and I still get constipated sometimes because a stoma only helps make it easier to manage problems, but it doesn’t fix what is broken. Stoma life is hard and has a lot of challenges that people sometimes think I can control by eating more broccoli and exercising more but the reality is these things only help some and are not fixes. What are the realities of your stoma?
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