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My disability limits my ability to do most things easily but one of the most common struggles I have that most people with Spina Bifida also have is difficulty going to the bathroom because those muslces often do not work properly. There are ways to manage constipation when you have a disability and everyone manages them differently but for most people there is no remedy that can cure an incurable bowel problem and sometimes you are stuck with a daily battle of constipation. As a disabled person I have always struggled with constipation and although my stoma has helped me prevent serious constipation that would need medical attention I still struggle because there is only so much you can do to manage bowel muscles that don’t work. Bowel issues are possibly the worst part of my disability and my family is very supportive of them but when you only see a small fraction of the things I struggle with daily sometimes it becomes obvious that people don’t understand. Bowel conditions have a lot of stigma associated with it because people do not understand what it means to struggle with constipation and sometimes people believe that we are struggling because we aren’t doing x,y and z. When you are abled sometimes you may get constipated by not eating enough fiber but for many disabled it’s a bigger issue and eating more fiber will change nothing. In this post, I am going to talk about some things about my bowel problems that I wish people could understand.
You can’t just take a probiotic and cure yourself- Disabled people are given more unsolicited health advice than we would care to admit and it’s not all bad but it can be harmful when it suggests that we are not doing enough to heal ourselves. When you have bowel issues people often think that you can cure yourself by eating more fiber, drinking water or taking a probiotic and I wish that was true. I take a probiotic every single day for gut health and have found them helpful for avoiding daily bloating but I don’t know a single person who lives with an incurable bowel problem that has said that fiber supplement cured me. A probiotic can give your body the good bacteria it needs to function optimally but for many disabled people probiotics alone is not what helps you go to the bathroom but it’s a combination of things and it’s a little insulting that you would think that curing myself when be that simple. I have been told by regular people and even some medical professionals have suggested that probiotics will change my life and it does help some but I still struggle because probiotics cannot cure incurable disabilties because if it could I would have cured myself a long time ago.
I get so mad when people make me feel guilty for not eating out- I love to hang out with my family but when I go to family functions when there will be a lot of food it can be quite stressful. My stoma interacts with some foods and if I am not eating the right kind of foods it will start to start to leak which can turn into a huge problem very quickly. I cannot fully control my bowel problems because I lack the muscle control to hold things in and sometimes I will have an accident that comes out of nowhere due to the fact that I don’t get the feeling of urgency like an abled person would and I usually only notice them after it’s too late. When I am home I not overly worried about having stoma issues because when I have all the supplies I need to deal with but when I am out I don’t neccessarily have everything. It makes me so mad when I am hanging out with friends or at a family function and people try to make me feel guilty for not eating a cookie by telling me it’s homemade and that I need to eat more carbs. The way you see me eat at family functions is very different than the way I would eat at home and although I know people well when they offer me candy it is causing me more stress when you can’t take no for an answer because you never know what kind of stoma problems that I am dealing with that day.
Sometimes I can’t go to the bathroom-.People who only see me at family functions often think that I take a few laxatives and everything works flawlessly and I wish that was true but unfortunately there is more to it than that. Some days I am able to take a laxative and have a bowel movement in under an hour but most days I am not and I quite literally cannot have a bowel movement or it takes hourse\. The problem with living with a bowel condition is that it’s unpredictable and you can be eating all the fiber and still have days where you are sitting on the toilet for hours wondering why you can’t go to the bathroom I wish I could explain the pain and nausea that occurs when constipation strikes because it’s truly a horrible experience and you should consider yourself privileged if you can go to the bathroom and it works every single time. There is no quick fix for totally preventing chronic constipation and sometimes you have to get help from your caregiver and pray that they have better ideas than you do. Since I had my hip surgery I have had two instances when I couldn’t go to the bathroom because not being able to move has a huge effect on my bowels and it’s doesn’t seem fair that I have to struggle with this often.
Cutting out major food groups is not the solution- When you struggle with bowel issues sometimes people think it’s because your diet is poor and will start making suggestions such as not eating dairy or reducing your sugar. Healthy eating can help reduce bowel problems because too much sugar can make you get constipated quickly but a single food alone is not what triggers constipation and it’s usually a combination of things. When you suggest that someone cuts out whole food groups it can be harmful because sometimes I need certain foods in small quantities to avoid constipation.
When you have bowel issues sometimes it’s hard for even family to understand because most people only see me a few times a year and only get a small fraction of what I go through on a daily basis. My stoma has given me the ability to have bowel movements independently and the problem isn’t that I lack laxatives to help me go to the bathroom but it’s that I lack the muscles to have a bowel movement easier. My disability affects me in ways I wish you could understand and that is okay because I don’t expect people to fully understand a disability that you do not have, my bowel issues are frustrating because I cannot fully control them, and people often think the reason for my struggles is because I am not eating enough fiber, or my probiotics don’t work. There is nothing that I can do that will cure my bowel problems and make things work every single time because a stoma is something that helps manage problems but it’s not a cure. There are some things about chronic constipation that I could never fully explain because it’s something you have to experience to totally get it but I do hope that I helped you understand that managing bowel issues is not as simple as drinking more water so you can be more compassionate towards people that have these difficulties. Bowel conditions like IBS are not something to laugh about like some people think it is because often these conditions cause a lot of pain, and you wouldn’t be laughing if you struggled with it. Do you have chronic constipation and how do you deal with them?