When you have Spina Bifida, often it is more difficult to go to the bathroom because most a lot of the time your bladder and bowel muscles are affected and don’t work properly. I have two stoma’s called a vesicostomy and am ACE (Antegrade Colonic Enema) which are two little holes on my lower abdomen where I insert catheters that is connect to my bladder and bowel that allow me to pee and poop independently. Stoma surgery is a choice that I have made for my health, but is not necessary for everyone with Spina Bifida and you can go to the bathroom without and it just may be a little harder. Doctors often will give patients who are considering stoma surgery more information about it. but they don’t know everything. Sometimes you still have questions that your doctor can’t answer because they don’t have one themselves. If you are thinking about stoma surgery but aren’t quite sure if it’s the right decision for you, talking with other patients who have one can be so helpful because we can tell you things your doctor will not tell you. What would I tell someone considering stoma surgery? In this post, I am going to talk about a few things I would tell someone who is considering getting a stoma.
Some days are going to be really frustrating- Doctors often will tell you all the positives of a stoma, but very rarely will they say anything negative about it, because less people would get them and a lot of the time your doctor isn’t aware of the negatives that come with a stoma. A stoma can positively change your life, and I think it’s important we talk about it, but at the same time, we can’t only tell people what’s good about it because some days are very frustrating. A stoma can help manage bladder and bowel problems with Spina Bifida, but it is not a cure, and you will still have accidents while living with a stoma. I have good days where I have hardly any problems, but I also have days where I am dealing with constant stoma leakage and running to the bathroom every ten minutes. I think it’s so important that patients understand that a stoma has a lot of positives, but most days you are going to wish you didn’t have it.
The surgery is awful, but pain is temporary- When I had stoma surgery, I had an NG tube up my nose down the back of my throat for about ten days, and anyone who has had that experience knows it’s a miserable experience. Stoma surgery is not fun, and sometimes when people hear about what the surgery entails, it prevents them from getting one. Yes, the surgery is not fun, and I will never eat Jello again because I was put on a liquid diet and that was all I was allowed to eat for a while, but it’s temporary, and you just have to get through it. Surgeries are sometimes awful experiences, but in most cases, it improves your quality of life and is well worth a couple of weeks of discomfort.
Don’t get one if you aren’t going to listen to your doctor. When you get a stoma, following your doctor’s instructions is so important, especially during that first year when everything is new. A stoma requires some maintenance, and if you aren’t going to listen to your doctor and go to the bathroom as often as they recommend, it’s not worth it and will cause you to have more unnecessary surgeries. It is okay to wait to get a stoma because you are only hurting yourself if you don’t listen to your doctor and need avoidable repeat stoma surgeries. I personally would never make my child get a stoma that did not understand the importance of taking care of yourself.
Stoma’s are for functionality, not to make a fashion statement- Many people are very hesitant to get a stoma because they don’t like the idea of having a hole on their body, and that is a valid feeling. I always like to remind people that a stoma is not pretty, but you get one because it’s functional and makes your life easier and you don’t get one to make a fashion statement.
The foods you eat play a major in avoiding stoma problems– When you have a stoma, sometimes it leaks a lot because it’s just a little hole on your lower abdomen that can react to anything you put in your body. There is nothing you can do that will completely prevent stoma leakage from happening, but the food you eat does play a major role in the amount of problems you have. Figure out what types of food trigger your stoma, because everyone has different triggers, and avoid them as much as possible, and do not skip meals. You cannot cure your stoma problems by eating healthier, but you can reduce the amount you spend in the bathroom by figuring out your nutrition. It took me a long time to figure out that the foods I was eating were causing me to have so many stoma problems, because now that my nutrition is on point and I have less problems.
It doesn’t last forever- When you get stoma surgery, sometimes people think that it’s something that they only have to do once, because doctors don’t always tell patients that it’s not a one-and-done deal, and sometimes revision surgery is needed. Stoma revision surgery is not as bad as the original, but if you want something that you only have to do once, stoma surgery is not for you. Doctors sometimes are not very clear at explaining to patients that revision surgery is sometimes necessary for things like hip replacement or a stoma because a lot of the time we figure these things out after it’s too late. I know that a stoma does not last forever, but we can’t assume that everyone is going to know that. I always like to tell patients that sometimes revision surgery is needed later down the road because your doctor does not always tell you that.
My stoma has positively impacted my life, and I have no regrets about getting one, but it’s not perfect and you will still struggle on a daily basis. If you are considering stoma surgery, I think it’s so important to talk to other patients who have one and hear their experiences because doctors don’t know everything. Patients can tell you things that your doctor is not going to tell you, which can be very helpful because then you know what to expect. There is nothing worse than when you get surgery, thinking it’s going to make everything better, and have all these surprises that you did not sign up for. These are things that I would tell someone who was considering getting a stoma that I have but it may be different for someone who is getting a different type of stoma. What would you tell someone considering stoma surgery? If you liked this post, please leave a comment below and share it with your friends.
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