When you have Spina Bifida, it is common for your bladder and bowel muscles to not work properly and there is no way to fix that, but there are a lot ways you can manage these issues. There are a lot of different ways you can manage bladder and bowel problems with Spina Bifida, and I chose to get a stoma because it gives me more independence. I have two stomas called a vesicostomy and an ACE (which stands for Antegrade Colonic Enema) that give me the ability to empty my bladder and have bowel movements independently. People sometimes confuse my stomas with an ostomy and think it’s the same thing, but I want to be clear it’s not an ostomy because I do not have any bags permanently attached to me that I have to empty regularly. My stoma’s are two little holes on my lower abdomen where I insert catheters when I have to go to the bathroom, but these things are removed and cleaned or thrown away when I am done using them. A stoma can help manage incontinence, but it is not a cure by any means and you still sometimes struggle to go to the bathroom even if you have a stoma. Most people I know with a stoma have deals with some kind of stoma leakage and it is normal to leak some and some but if you can’t get it to stop it can be problematic. How do you stop a leaky stoma? In this post, I am going to talk about some things I do when my stoma does not stop leaking.
Drink a bunch of water- My vesicostomy, which is the stoma I have that is connected to my bladder, does not usually leak unless my bladder is overly full or something is not working properly but an ACE on the other hand, which is the stoma connected to my colon, is a whole different story and leaks constantly. It is completely normal for an ACE to leak and react to certain types of food, but it should stop eventually. Some days my stoma hardly leaks at all, but sometimes I will eat something that my stoma does not like, and it will leak literally all day long. What can you do to stop it? There is nothing to my knowledge you can do that will immediately stop leaking, but it might help to start drinking tons of water because water dilutes something in your body and can help calm things down or stop leaking completely. I have mentioned before that laying in a hot tub helps with constipation and stand by that, but if you are leaking, it doesn’t necessarily mean you are constipated, and laying in a hot bath will not always help and that will potentially do is make a mess. You want to make sure that you are drinking plain water because sugary beverages tend to react with an ACE and will probably make your problem worse.
Lay on your side- When my stoma is giving me problems, sometimes you may see me lay on my side. Why do I lay on my side? I lay on my side because changing your body position often helps put pressure on different areas which sometimes gives you temporary relief. I love to lay on my side when I am having any kind of gastrointestinal problems and I don’t know what it is that makes laying on your side so effective, but it works because I have gotten my stoma to stop leaking by laying on my side for ten minutes. You don’t have to lay on your side for hours to get relief from GI issues and depending on the severity of your problem, sometimes it may not work but it’s worth a try.
Visit your doctor- A stoma that leaks a little is not a red flag, and it’s normal to experience leaking on a daily basis but if something feels like it’s changed and you can’t get it to stop, it might be a good idea to visit your doctor because usually there is a medical reason that is happening. Nowadays, there is so much more doctors can do about a leaky stoma, and there are some minor procedures you can have done to control leaking or if you wanted to, you could get a port put into your stoma that helps some people leak less. I have tried getting my stoma plugged, but it didn’t work out for me personally and just caused me a lot of pain, and I was not willing to live with that level of pain. Go see your doctor when your stoma is causing you more problems than usual because a lot of the time there is something that can be done about it. It is important to know that yes there are things doctor can do to help you leak less but to my knowledge there is no medical procedure that can completely stop leaking permanently.
Know your food triggers- Nutrition plays a huge role in having a less leaky stoma, and not everyone is going to react to the same types of food, but it’s important to know what foods trigger you and avoid them as much as possible. As a disabled person, I found that my body can’t handle a lot of dairy products and although I still eat dairy, you won’t find me drinking glasses of milk or adding extra cheese to burger on a regular basis. Exercise is important for less stoma leakage, but it mostly comes down to the foods you are consuming because if you are constantly eating triggering foods, it’s going to give you problems that don’t seem to go away.
Do a little exercise- It can be difficult to exercise when your stoma is actively leaking, but it exercise can help manage a leaky stoma because when you exercise, you keep things moving and won’t get as constipated, which will help your bowel regimen work better, so you leak less. If you exercise, you still will leak because exercise is not a cure, but I notice a huge difference in how often I leak when I am not exercising consistently. A leaky stoma can sometimes prevent you from exercising and if you can exercise in the morning before you have eaten anything it may allow you to do some exercise.
Limit your stress- When you are stressed, it affects more than just your brain, and high-stress levels can also have a negative impact on your gut health. If I am stressed, I know almost immediately that I need to do something about it because my stoma leaks more than usual, and if I am overly stressed sometimes, I can’t have a bowel movement as easily and it takes three times as long. Stress can have an impact on your entire body, and if you are stressed enough sometimes, it gives you unpleasant GI problems and makes you poop more, or if you are disabled, you might not be able to have a bowel movement. It can be stressful to live with a stoma, but you want to try to keep your stress levels low to minimize the amount of stoma problems you have.
Keep it covered– A leaky stoma is sometimes mild, and you don’t have to do anything about it, but depending on what you ate, sometimes it can be very severe, and the second it happens, you are bolting to the bathroom. As a disabled person, I almost always have my stoma covered with a gauze pad because although you can still have a severe problem and need to change your entire outfit, most times you can avoid an outfit change and only have to change the gauze which is far less work than changing your entire outfit. Keep your stoma covered because sometimes when your stoma is leaking it is visible on your clothes and embarrassing but if you keep covered you have a little more protection and you won’t see it as well.
Empty your bladder- Whenever my stoma is leaking, one of the first things I ask myself is when was the last time I peed because a full bladder puts pressure on your bowels and sometimes is the problem. If you have a full bladder, it obviously will make your vesicostomy leak, but it doesn’t just affect your bladder; it also puts pressure on your bowels, so it may also cause you to poop as well.
Keep your rash cream handy– If your stoma has been leaking a lot it is possible that you could develop a lot of rashes that are very painful. Skin rashes from a stoma problem is not usually a medical emergency but it’s important you don’t ignore it because a rash that is not dealt with can start to bleed and need medical attention. I always keep my rash cream handy and keep applying until it goes away to prevent serious skin infections and to get some relief because these rashes can be painful and distracting.
My stoma has given me the independence I wouldn’t have without it, but it’s not perfect by any means and sometimes, stoma life can be very stressful and not everyone understands the challenges of living with a stoma. Many people with Spina Bifida have the same type of stoma I do, but not everyone with my disability needs or wants a stoma because it’s not a requirement, and there are other ways to manage bladder or bowel problems without a stoma if you don’t want one. A stoma can be a lot of maintenance, and sometimes it is embarrassing because a leaky stoma that is connected to your bowel is going to have a very noticeable bad smell, but I do the best I can to manage it. These are things that help me control a leaky stoma as one disabled individual but not everyone with a stoma will manage it in the same way because not everyone gets relief in the same way and people with a different type of stoma may not benefit from these tips at all. How do you manage a leaky stoma? If you liked this post, please leave a comment below and share it with your friends.
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