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Stoma surgery is a big decision that most people never have to make but for many disabled people that is something we have to think about because our bladder and bowel muscles don’t work properly. When you have Spina Bifida it is common to have bladder or bowel problem which cannot be fixed through surgery and the only way you can manage this is with a stoma. Everyone manages their bladder and bowel problems differently because not all doctors are trained in the same procedures but for most people with Spina Bifida, we get what you call an ACE or vesicostomy which are basically stoma’s that help us manage our bladder and bowel problems independently. This allows us to be able to do our own catheterizations and have regular bowel movements without needing tons of help which is a huge step towards someone’s independence. Getting a stoma can be a rather difficult decision to make and not something I would totally rely on my doctor or my caregiver to make for me because they will always tell me it’s a fantastic idea. If you have been thinking about stoma surgery but aren’t quite surgery if it’s the right decision for you here is what I tell people to help them make a decision.

Explain the pros and cons-Doctors and caregivers often will push stoma surgery because they think it’s the best surgery you could ever do. I am not going to argue that a stoma will improve your life but I would never go as far as saying it’s the best thing I have ever done because I don’t believe it is. I am more independent because of my stoma and I am glad I have it but it causes so many problems regularly that I wish would go away. When I first got my ACE I got so depressed because it caused so many problems I did not anticipate that I almost wanted it gone. Fortunately, I was able to find balance and figure out what was causing all these extra bathroom trips because depression with a stoma is real! People often only talk about the pros of living with a stoma but it’s also important we talk about the cons because nothing is perfect and there will be problems. A stoma can change your life but it’s important to understand that it does not cure you of your condition and is not this wonderful thing that doctors want you to believe it is. Knowing all the pros and cons is important for making a decision because if you only talk about the pros people will get this wrong idea of what a stoma does for you.

Where is your mental health?– What I don’t understand is why don’t doctors put more emphasis on mental health when someone is considering stoma surgery? There is just as much talk about mental health before stoma surgery as there is with any doctor’s appointment when there should be much more. You are literally putting a huge hole on someone’s body and what I think many doctor don’t understand is that it not only is functional but also affects the way we see ourselves. The first thing I always ask people considering stoma surgery is where is your mental health? Stoma surgery is a terrible idea if your mental health is not in a good place because it will only make your depression worse. Work on improving your mental health and then consider stoma surgery because severe depression that you may not be able to come back from is not worth the risk. Some people have a really hard time with stoma acceptance and have a heart attack when they see their new stoma for the first time so it’s really important to make sure your in the right mindset before going through something this life-changing.

Are you ready to take care of it?– There are tons of people that are on board with getting a stoma but aren’t really motivated to do what is required to take care of it. There isn’t a lot of self-care involved in taking care of a vesicostomy or an ACE but you do need to do catheterizations every couple of hours and have regular bowel movements every couple of days. Regular catheterizations aren’t usually as much of a problem for some people because it only takes a couple of minutes but keeping up with bowel regimes is like pulling teeth. I try to help people understand that after you have this procedure your not going to be able to have a bowel movement in five minutes like most people can but for some people it can take as much as two to three hours. This is a great idea if you are willing to commit to the self-care but if your not and only plan on having a bowel movement once a month then it’s not a great idea and I would wait until you are ready. It’s dangerous for your health if you don’t go to the bathroom regularly and will only lead to more doctors appointments and hospitalizations.

I talk about my experience-  Whenever someone is considering a vesicostomy or ACE surgery I try to tell them as much as possible based on my experience because doctors tend to leave a lot of important details out until after the surgery is done so their patients don’t worry as much. When someone is about to go through stoma surgery I do my best to help people understand that it’s an awful surgery and will probably hate your life for a short time because the NG tube is bothersome but after the fact, you will love it! Being real and honest is the best thing you can do for someone who is not sure this is the best decision because it gives them hope that their life will be better and lets them better prepare for what lies ahead.

Stoma surgery is a big and stressful decision that some disabled people have to make in order to make their life easier. When you have Spina Bifida stoma surgery is horrible but getting a stoma is one of the best decisions I have ever made because I now can do more for myself than I could without it. You won’t need assistance or very little to go to the bathroom which is a huge step towards a disabled person’s independence because there is nothing more annoying than being incredibly constipated and not being able to do anything about it because your caregiver’s busy. Take care of your bathroom needs on your schedule because not always is someone else’s schedule convenient to yours! There are many different types of stoma’s and these are things that I would say to people that had my specific type of stoma but not necessarily to someone who had a different type of stoma. We are all so different and some of the things may not be appropriate accurate to say to someone with a different type of stoma. If you considering stoma surgery and aren’t sure if it’s a good idea talk to someone who has it because they can tell you much more about living with it than your doctor can. What would you say to someone considering stoma surgery?

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