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When you have a disability such as Spina Bifida, it is common to have bladder and bowel muscles that do not work properly, which can be managed, but there is no cure. There are many ways to manage bladder and bowel problems, and not everyone will manage them in the same way but if you want to make your life easier and have more independence a stoma can do that for you. . Stoma acceptance is something that a lot of disabled people have to work on because it’s the easiest way to manage our conditions but it’s hard when a lot of people shame stomas and think the solution is to get rid of it. When I got my first stoma called a vesicostomy, which is what helps me be able to pee independently, I was very young and never had any real issues with acceptance because it’s everything I have ever known, and I don’t remember what life was like without it. I did struggle with acceptance when I got an ACE, which is another stoma I have that gives me the ability to have bowel movements because it caused a lot of leaking problems that I did not anticipate. It almost got to the point that I almost wanted to get rid of it, which luckily I never seriously considered because that would not have solved any problems. If you are struggling with stoma acceptance, you are not alone because most people I know who get a stoma go through a period where they are still figuring things out and question if a stoma was the right choice for them. In this post, I am going to talk about how I learned to accept my stoma.
Change the way you think about it– I have two stomas that help me go to the bathroom independently, but they are two little red holes on my lower abdomen that are not pretty. Some people with Spina Bifida will have a stoma to manage bladder and bowel problems, but some people will never get it because, in my experience, many people have a hard time accepting the fact that they have an ugly hole on their body.If it were, it would be the world’s worst trend. If you view your stoma as an ugly hole on your body, you will never reach the acceptance phase because you are not looking at the positive side of it, but instead, you are only focusing on the negatives. When I got my second stoma, I didn’t struggle as much with the physical appearance of it since I already had one that looked almost identical but it was more about coming to terms with the fact that I was going to have a leaky stoma, and there was nothing I could really do to fully control that. When you look at your stomach and see two little red holes, it’s easy to fall into a place of self-hatred but you have to remember that you get a stoma to improve your life, not to make a fashion statement. You may never reach a point where you don’t mind the look of your stoma, but when you change the way you think of it and don’t see it as ugly holes you need it can help you accept it most of the time.
Talk with people that have one– Before I got an ACE, I wish I knew another person with Spina Bifida who also had one because I was under the impression that bowel management was going to be similar to my first stoma, but it’s very different and, in my opinion, more frustrating. Doctors will tell you anything to convince you that you need surgery because they get paid a lot to do them, which is why I always encourage patients to talk to someone who has the stoma they are considering. If you are considering stoma surgery, talking to someone who has one can be so helpful because doctors only know what their textbooks tell them and often will only tell you the good things, which is important but not a reality. I think if I would have had more information about my second stoma, I still would have done it, but I would have been better prepared because I would have known what to expect. Doctors play an important role when it comes to big medical decisions, but at the end of the day, they are only performing these procedures and have never personally experienced them, so you want to talk to patients to get more information that your doctor may not be telling you. Talking with other advocates that have the stoma you are considering is so powerful because a lot of patients get frustrated with their medical team when they leave important details and convince them to sign up for a much bigger surgery than they intended. Doctors can give you a better science lesson on a disability than a patient ever would be to but patients live with it and know things that you wouldn’t know unless you had one.
Take some time to think about – There are some instances where a stoma quite literally saves your life and waiting it out is not an option, but when you have Spina Bifida, a lot of the time you can put off stoma surgery for a year or so. If you are considering a stoma but maybe don’t have the greatest mental health, it’s okay to put it off for a year or two, because I can’t stress enough how important good mental health is for major life changes. Give yourself some time to think about it because there is no shame in waiting, and if you are struggling, I think you should put it off until you are ready to take on the responsibilities that a stoma entails. A stoma is not worth it if you are not going to do what your doctor tells you to, causing yourself to get sick and have more surgeries. I waited a full years before doing my second stoma surgery but if I would have known all the frustrations that come with it I think I would have waited longer.
Wear clothes that make you feel confident. – There is nothing wrong with wearing a bikini if you have a stoma, and some people may be totally fine doing that but personally, it’s not for me, and anything where my stoma might be showing makes me super self-conscious. I don’t like people approaching me and asking very personal questions, which would happen if my stoma was exposed. There is no right way to dress with a stoma because some people may rock that bikini, while others will have intense anxiety with wearing a crop top out in public. Wear things that make you feel most confident as an individual because stoma acceptance is so much easier when you feel sexy in what you are wearing and sometimes you will even forget about your stoma when you are confident in your outfit. I wish I could be one of those people who could wear anything and not care what people think of my stoma, but I am not, and there are certain things I will not wear because of my stoma.
Give your stoma a name – Disabled people sometimes will name their assistive devices because it can help you view it as something positive which can get you to a place of acceptance. Naming things isn’t only for assistive devices like wheelchairs and crutches but you can also name your stoma if you want because it is a part of who you are and I think it deserves a name.
When you have Spina Bifida, a stoma is not always necessary because you can manage bowel and bladder problems without one, but it will make it easier. Doctors and even caregivers sometimes highlight only the pros of a stoma, which I think is good, but it’s not reality because although a stoma may help you better manage your condition, it’s not a cure and will not fix all your bladder and bowel problems. When people ask me if they should get a stoma, I don’t discourage people from getting a stoma by only talking about the negatives because there is a lot of good that comes from having a stoma, but I also try to help people understand that there will be days when you spend all day in the bathroom so people don’t have the wrong idea that a stoma cures your bladder and bowel problems. Stoma acceptance is a process, and it’s okay if you don’t love your stoma at first because most of us don’t. How do you accept your stoma?
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