When you have Spina Bifida, it is common for your bladder and bowel function to not work properly because when something affects your spine, it doesn’t just give you back problems and other muscle groups can also be impacted. Chronic constipation will always be a part of my life because my bowels have never worked properly, and there is nothing doctors can do to fix that and make them function normally. People sometimes think they understand what it’s like to live with bowels that don’t work because they know a disabled person and have gotten constipated before, but it is not the same, and what I experience is very different from occasional constipation that a non-disabled person may sometimes get. It is frustrating to live with bowels that don’t work because I can’t change my disability, and can be doing everything right and still have issues. People sometimes think they understand, but you will never understand how stressful it is to live with bowels that don’t work until you have been in that situation and experienced it. What do I wish people understood about living with bowels that don’t work properly? In this post, I am going to talk about a few things that people often don’t understand about my bowel problems that I wish they would.
Regular exercise does not completely prevent bowel issues- Exercise can sometimes help prevent constipation and if you are able, doctors often recommend you exercise because exercise helps keep things moving and lessens the likelihood of constipation. One of the things people sometimes don’t understand is that exercise does not cure my constipation, and often people will say, “Have you tried exercising more?” Exercise can help prevent constipation, and when I am exercising consistently, it is a little easier to go to the bathroom. I can still have issues when I exercise consistently because I can’t exercise my disability away, and can be doing everything right and still have issues. It can be frustrating when I am having a problem and people think that if I went to the gym more often, I wouldn’t have these problems. Exercise can slightly improve symptoms, but it does not guarantee you will never have painful constipation.
Diet changes can’t fix my bowels, and it only slightly improves them– If people aren’t suggesting that I need to do more exercise to prevent constipation, they are telling me my diet is the problem. I have to eat a certain way because I am more prone to constipation, but just like exercise, you can’t eat healthy and cure an incurable disability. You can lessen the likelihood of painful constipation by eating more fiber and drinking enough water, but you can still get constipated when you do these things because healthy eating is not a cure. There is no diet that I can follow that will completely eliminate painful constipation because I have tried many different diets, and if the perfect diet existed, I would have figured it out by now. Please stop telling disabled people that we can cure ourselves by eating healthier, because it’s harmful, and a vast majority of disabled people can’t cure themselves with healthy eating. Diet changes only slightly improve my bowel function, but it doesn’t fix it.
I can’t eat as much sugar as a non-disabled person- I have had friends who have referred to me as a health nut because I eat healthy most of the time, and people sometimes think that I am stuck in diet culture and afraid to eat unhealthy foods. If there is one thing that I wish people could understand, it’s that I eat the way that I do because I have no choice if I want to have less pain. A high-sugar diet causes inflammation and can trigger constipation, and I have to watch my diet more closely because if I eat the wrong kinds of food, I will create problems. It’s not that I never want three donuts, but because of my disability, I have to learn to control myself, and there is nothing more frustrating than when people guilt me into eating something that my body can’t handle today by telling me it’s homemade. People who struggle with constipation often can’t eat as many cookies as someone without our disability can, and it’s not because we are physically unable to, but it’s mostly because we don’t want the negative consequences that come with it. If I tell you that I don’t want that cookie, please honor that because you don’t know what issues I have dealt with that day.
Some days I can’t eat more than others– I can’t eat as much sugar as someone without my disability can but there are days when I can’t eat more cookies than others because not every day is a bad day. People sometimes think that I have to severely restrict myself every single day, but that is not always true because every day is different, and some days, I can eat three donuts without a problem, while other days I struggle to eat one.
My stoma problems are not within my complete control– My stoma leaks often and reacts to a lot of food, and sometimes people think that if I stopped eating junk food and ate healthy that I’d be able to control my stoma problems. Unfortunately, it doesn’t work that way, and the amount of stoma problems I have is not within my complete control. I can only somewhat control my stoma problems through diet, and how food affects me is not something I have control over. I sometimes have issues with foods such as vegetables that you wouldn’t think I’d have a problem with. There is nothing more frustrating than when people get irritated with me because I was having a stoma problem that was not convenient, and they think it was my fault.
I am probably stressed at events with food- If I go to a family where there is food involved, you should assume that I am a little stressed. I never know if the food provided is going to trigger me, which is why I usually eat before family functions that are not at my house. I wish people could understand how stressful it is to go somewhere with unpredictable bowel issues because there is nothing more embarrassing than when I am having an issue and people draw attention to it, causing more stress.
When you live with bowels that don’t work properly, it can be frustrating because people without your disability are never going to understand how hard it is to manage a medical condition, and often think I can just fix everything. As a disabled person, I need to have more self-control when it comes to food for less problems, but more often than not, I don’t need to restrict myself as much as people think I do because I know my body and its triggers. There is nothing I can do to completely eliminate triggers, and sometimes I eat things knowing it’s probably going to cause a problem, but a lot of the time I don’t care and deal with the consequences because cutting out everything that tastes good is no way to live. Bowel problems are stressful because you never know when they are going to act up. Most people with Spina Bifida have bowel problems, but not everyone will struggle as much because disability affects everyone differently. What do you wish people understood about living with bowels that don’t work? If you liked this post, please leave a comment below and share it with your friends.
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