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As a disabled person, I have been given all kinds of advice on what I can do to cure myself but when people find out I have a stoma it makes them extra fired up with even more bad advice than they would have orginally given me. When people see my disability sometimes they are uncomfortable and feel bad but as soon as I tell them I have a stoma to manage my bladder and bowel problems they are even more traumatized and you would think that I was on death’s door with the way that some people react to it. A stoma can change and save lives but unfortunately, most people that do not have one or know someone who does will not see it that way because the moment you start talking about your stoma is when people start giving you unhelpful advice on how to cure muscles that have never worked. Disabled people should not be afraid to talk about their stoma because it’s not the worst thing that will ever happen to but so many people are because abled people often see it as something bad and shame us for it. In this post, I am going to talk about some things people say when they find out you have a stoma that you need to stop saying!
Your doctor is the problem– When you are disabled or chronically ill you are always having to deal with that one person who thinks your disability is because of a poor medical team and if you went to someone else you’d be cured. There is nothing wrong with suggesting a second opinion if someone is getting bad care or you think was misdiagnosed but you shouldn’t assume that all disabled people need new doctors because many of us are getting excellent care and don’t need new a medical team. When you suggest that someone gets a second opinion without any real reason you are suggesting that my medical team is not good enough and that there is someone better that can fix me which we all know is not true. Second opinions can be helpful if your current doctor is not listening to you and the problem isn’t that disabled people should never seek help from multiple doctors but it’s that abled people tell us that the reason we struggle is because of our doctors.. When someone tells me that they know someone who can cure Spina Bifida I know you are full of it because there is no cure for my disability but some people may not know that and will wonder where they can get this cure. When you tell a disabled person that there is a better doctor who can cure them you better have science to back it up because it gives disabled people false hope which can severely hurt someone’s mental health if it’s not true. My doctors are part of solution not the problem because if it wasn’t for my medical team I would not have been able to get life-changing surgeries that have given me independence and I think the real problem is ableist people that think we would be better humans without our disabilities.
Eat more spinach for less stoma issues– When you have a stoma you are given more diet advice than you would care to admit and it’s not just from doctors who may give helpful nutrition tips but it’s usually from abled people who do one Google search or watch one video of your disability and think that makes them experts on your challenges. My stoma leaks mostly when I eat carbs but other things can set it off and sometimes people think that the reason for all my struggles is because I am not eating enough spinach and too many carbs. Who knew that answer to all my problem was to just eat more spinach? I have made many diet tweaks throughout the years because as I get older I have noticed I have developed some food intolerances that I didn’t have in my early twenties but nothing has completely gotten rid of my stoma issues completely. Doctors recommend that you watch your sugar intake if you have an ACE which is the stoma I have connected to my colon because most people will react to it but even though some people have had to give up donuts that doesn’t mean everyone will react after eating one piece of cake and have to find sugar substitutes. I wish the solution for stoma problems was as simple as eating more spinach or drinking more water but it’s not that easy and although water can help when you are having a problem there is no such thing as the perfect diet because if the perfect diet existed I would have found it!
I know someone who did XYZ and it worked for them- I know a lot of people with an ACE that has less or more leaking than I do which is hard to believe that someone has more problems than I do because I have a lot. Some people try to help and will be like I know someone with your stoma who ate less nuts and it worked for them. An ACE affects everyone differently and even though one diet change may work for one person that doesn’t mean it will most definitely work for every single person who tries that same thing because some people can eat dairy without issues while others can’t. If someone were to ask me what kind of nutrition I have for less constipation I would tell them I drink lots of water and limit how much dairy I am consuming but I would never say that everyone needs to do that and that it will most definitely work for everyone. I can’t eat a lot of dairy because it makes me constipated but some people can and wouldn’t need to stop drinking milk. It is helpful to learn from the community to see what works for people and what doesn’t but at the end of the day, you have to learn about your body because your friend may not have the same food intolerances as as you do and won’t need to limit the same things. There is nothing wrong with giving nutrition advice to someone that is struggling but you have to understand that even though something works for you that doesn’t mean it will work great for your friends.
A stoma is not “normal”and you shouldn’t get one- I had a friend who hesitated to get a stoma that would make her life easier until she was eighteen because her parents told her it was not normal and to not get it. A stoma is not something that everyone will want or need and sure it’s not a natural part of you but if my parents or anyone in my family were to act that way toward my stoma I’d have severe mental health issues because a stoma is hard enough to accept and if there is anyone that should educate themselves it’s families. Kids naturally will want to make decisions that will make their parents happy and disabled people often will not make medical decisions that they think their families will not support even if it’s a surgery that would change your life and make it infinitely easier. Parents that tell their kids to not get a stoma because it’s not “normal” should be ashamed of themselves and are the reason your child doesn’t have independence and may struggle with body confidence so I hope you are happy with that!
If I had your disability I could never have a stoma– Some people with Spina Bifida have a stoma to help manage their bladder or bowel problems but some people may not want it or do not have doctors who are trained in creating one and that is okay because there are other ways to manage bladder or bowel problems without one. People often are traumatized when I tell them about my stoma which is the reason I don’t tell a lot of people and sometimes people will be like if I had your disability I’d die before I got a stoma. I think you are being a little dramatic when you say that you would never consider a stoma because if it was your only choice of survival I am pretty sure you would probably not choose death and would learn how to cope like the rest of us! There is nothing wrong with not wanting a stoma but it’s not helpful to remind someone who has one how awful it is and it only makes people feel worse about themselves.
A stoma changes and saves lives but unfortunately, the average abled person doesn’t see it that way and thinks that our doctor is the problem and if we went to someone else we’d cure ourselves but if it was that easy there would be less struggle in this world. Abled people often see a stoma as something negative but it’s not the stoma itself that is negative and it’s how people react to it when disabled people want to talk about it. A stoma can make a huge improvement in a disabled person’s life and the problem isn’t that it’s a bad thing but abled people see it as a negative that needs or can be cured. A stoma affects disabled people more than it will ever affect abled people because although you may see my stoma occasionally I have to look at it every single time I take off my clothes and it’s not helpful to remind someone how ugly it is . There are many different types of stoma’s all of which have different challenges that serve different purposes but the one thing we all have in common is that we need them to improve our quality of life because if as green juice was the cure our doctors would have told us to do that. Some people have stoma because they would have died without it but I would not have and I got it to be less dependent on others so for me it feels like it wasn’t a choice. What bad advice do you get because of your stoma and what would you add?
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