When you have Spina Bifida it is common to struggle with going to the bathroom and for your bladder or bowel muscles to not work properly. Every doctor deals with these issues in a different way because not all doctors are trained in the same types of procedures and not all people with Spina Bifida will have these issues but some people may struggle more than others. I have never been able to go to the bathroom independently because since the day I was born those muscles have not worked properly so I have always used equipment like catheters to help me go. When I was little my mom would catheterize me but once I got a little older I got a stoma called a vesicostomy and an ACE so I could manage my bladder and bowel problems independently. A stoma is not something that everyone is running to go have but it saves and changes lives and is necessary for some disabled people who can’t go to the bathroom on their own. There are many negative to living with a stoma but there are also a lot of things you can learn from it that you wouldn’t learn if you didn’t have one. In this post, I am going to talk about things I have learned from years of living with a stoma.
You are only in control of your own actions- My ACE leaks mostly when I eat sugar but any food can throw it off and when it does it smells.. Some people try to be understanding because they know I can’t fully control my bowel issues but so people don’t care and take that as an opportunity to make fun of me. My disability has taught me not to take things personally because if you are going to make weird farting noises to mock someone with a chronic condition you have a maturity issue. I am a little hurt when people try to embarrass me out in public about a problem you know nothing about but I expect it from some people and it says a lot about a person. Some people have a hard time forgetting about incidents where someone is downright rude to them but I have the opposite problem and will most likely brush it off and forget about it in an hour. I don’t have the energy to let every single rude person get up my skin because you can either choose to let someone ruin your day or ignore it and be happy!
Appreciate my body in a different way- I have two stoma’s on my lower abdomen so I can manage both my bladder and bowel problems independently. If I didn’t have a vesicostomy or an ACE I could find ways to go to the bathroom but I would need help doing it. A stoma is not something everyone wants to have but is necessary for some disabled people to live independent lives. I don’t know a single person with a stoma who loves it and thinks they are beautiful because truthfully they are not and are pretty darn ugly. You learn to accept your stoma because that is the only choice you have but that doesn’t make it easy. My stoma’s are bright red little holes on my lower abdomen but I didn’t get to make a fashion statement but to make my life easier. Body confidence is different when you have little holes on your body that you can’t get rid of because you need to have a whole different mindset for accepting your body. My disability has taught me how to accept my body in a different way because body confidence is not a one-size fits all and for many disabled people it takes much longer to accept your body than it does for abled people.
It made me more aware of my bathroom habits– It made me more aware of my bathroom habits- If there is one thing that my disability has taught it’s how to be more aware of my bladder and bowel habits. Most people I know have no difficulty with going to the bathroom and can eat as much as they want but I don’t have that luxury. I am at a higher risk of developing a bladder or kidney infection and if I don’t drink enough water it can be a major problem for me. I never understood how people can drink bucket loads of coffee but struggle to drink just one cup of water. I don’t maybe if you swapped a couple of cups of coffee for water that might solve your problem! My bladder and bowel issues have made me more aware of my bathroom habits and taught me the importance of gut health because I can’t afford to slack off without major consequences. I don’t mind going to the doctor if it’s absolutely necessary and it’s for a problem I couldn’t have prevented but I am not going to go because I did something stupid. I am more aware of my gut health because I have to be in order to stay healthy and I don’t know if that would be the case if it wasn’t for my disability.
The art of planning- I am not a time management person by any means and I am probably one of the biggest procrastinators you will ever meet but I do have some level of planning because my disability forces me to. I always have to be thinking about my disability and if I never thought it about I would never be prepared for when disaster struck when I wasn’t at home. If you were to ask me what my next meal was or what time I was planning on waking up for an eight o’clock doctor’s appointment I could tell you because it’s important for me to think ahead and plan these things out to minimize problems. I can’t eat twenty minutes before I go somewhere or decide I want to spend the night at someone’s house last minute because if it interferes with my bathroom regime that can be a problem. If it wasn’t for my disability I think I would still be able to plan but I wouldn’t have a reason to be over-prepared for things and would probably struggle with it a little bit more.
When you live with a stoma there are a lot of negatives that come with but there are also a lot of things you can learn from it. A stoma is not something that every disabled person needs because some people can go to the bathroom without difficulty but it is a necessity for some people to have independence. There are different types of stoma’s with different purposes and the ones I talked about in this post are only what have but there is so much you can learn from any type of stoma. I have accepted my stoma but there are days when I have feel frustrated and wish it would disappear. It’s okay to have these feelings because as a disabled person you go through so much more in a month than abled people do in a lifetime. The most important thing is that you recognize these feelings and are able to get yourself out of them. I have learned a lot of things because of my disability that I could learn without a disability but not to the same extent. My disability has forced me to look at things in a different way because some things are impossible to do in the same way as abled people. What lessons have you learned from living with a stoma or a disability in general?
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