What It’s Like Living With A Stoma

Today I am starting a new series that I was supposed to launch in December but I never got around to it better late than never! The series is called what it’s like living with… and the aim of it to help those who don’t have disabilities understand what it’s like to live with visible or invisible disabilities and bring awareness to them.  I have a neurogenic bladder like most people with Spina Bifida which is a big fancy term that doctors use when you lack bladder control because of a brain, spinal cord, or nerve problem.  I have never been able to go empty my bladder in the same that everyone else can because those muscles don’t won’t work so when I was seven years old my doctor created a stoma on my lower abdomen that would give me the ability to empty my bladder without help. A week before surgery I was on a jello and broth diet and after surgery, I was admitted to the hospital with an NG tube unable to eat or drink for seven days while my body healed. Once I could start eating solid foods can you guess what my first meal was? Yep, you guessed it jello! I went home with a foley bag which a catheter that was sewn into me that drained my bladder 24/7 so it could heal but it got clogged so I had to rush back and was admitted to the hospital for another three days. There are many types of stoma’s that serve different purposes which can’t fix a condition but they can treat one. My vesicostomy is not the cure for all my bladder problems but it does help keep them controlled so I decided I wanted to talk about what it’s like to live with one.

Self Care Is Important-  For most people with a vesicostomy, it is recommended you empty your bladder every three to four hours to keep your bladder healthy but not everyone listens to this advice and some people will brag about how they can do whatever they want and never have consequences. How is it even fair that people who listen to their doctors have all kinds of problems and people who don’t and never have consequences?  When doctors create a vesicostomy they use a section of the large intestine but the downside is it makes a lot of mucus which rolls around in your bladder creating stones for some people usually the more active ones. In 2008 I started getting bladder stones and had six to eight bladder stones removal surgeries some of which could be removed by a laser while others could not because they were too large but they always returned in a six week time period. It was the most frustrating thing ever but what can you do when your body hasn’t figured out that it has another purpose? During that time my doctor was doing tons of research looking for medication that would prevent the stones and luckily my doctor found a medication called Renacidin that I instill directly in my bladder a couple times of day that dissolves stones. Self-care is pretty low maintenance with a vesicostomy but it is important that you listen to your doctor and empty your bladder as much as it’s recommended and keep it clean to prevent infection. It has been recommended that I empty my bladder every three to four hours during the day and every six at night to prevent from getting too full and as much of a pain as that can be I’d rather wake up in the middle of the night than have medical problems any day!

Not everyone understands- When I was having problems with bladder stones I had my fair share of rude comments because people thought this was a simple problem to fix and my doctor just wasn’t trying hard enough to fix it. I would get things like you must be doing something wrong or you wouldn’t have this issue or maybe you should get a second opinion and your doctor might not be doing enough. Most people with Spina Bifida have had tons of reconstructive surgeries and many physicians do not have knowledge in these procedures so finding a new doctor would be like a needle in a haystack because not all physicians have knowledge in these procedures and you may not be very successful at finding one that can effectively treat your condition. I went to a transition Spina Bifida Clinic for adults and was not impressed because many of the new adult doctors were not educated on the many procedures I have had and unless I had no other options I would not want to go to these specialists because there would be so much they didn’t understand. I am fortunate I haven’t had to switch and many of my pediatric doctors still seem.  I got frustrated at times but mainly at myself not my doctor because he was just trying to help and going to someone else wouldn’t necessarily get answers faster!

It takes me longer to empty- It can take me up to ten minutes to empty my bladder and if my catheter is sticking or not going in smoothly then it may take longer. People often don’t understand this and get impatient when I am taking longer and think that if they yell “hurry up” I will go faster as if  I have the ability to make things go faster. I have no control over how long it takes me to pee and although there are ways I can try speed the process up these methods don’t always work and if I am out I don’t always have the equipment I would need to make it faster. I can only go at the rate of my catheter and sometimes it takes five minutes while others it can take up to a half-hour it all depends on if there is something backed up or if my catheter is going in smoothly!

Sometimes I struggle with my mental health- My stoma is bright red so it is not the most beautiful thing you will ever see but it is not a fashion statement.  It was created to help make my life more functional and me, more independent. Sometimes it can take a toll on my mental health when I look at them because they are not the most beautiful you will see and some days I just want them gone especially on days when there are complications! I always have to remind myself having them removed might make me more confident in myself but it would create other issues that I now have under control so this would not be a very smart choice.  Sometimes I have meltdowns when my mental health is really struggling but I get over it and remember my life is forever changed from these medical procedures.

It requires close monitoring-  A vesicostomy or any stoma of that matter can have problems that pop up at any time and it needs to be closely monitored by a specialist so this doesn’t and you can’ avoid any medical emergencies. because that’s no fun! For me, since I have a history of bladder stones I  have tests every three months to make sure the medication is still working and there aren’t any changes. They usually come back clear but my doctor doesn’t just check for that he also looks at the kidneys, and measures the cysts over my ovaries to make sure that ] hasn’t grown which it hasn’t! The vesicostomy sometimes can start to have problems as it ages or the bladder can change so it needs to be monitored by a specialist to prevent any serious problems. My vesicostomy is twenty years old and I just had a revision but haven’t many many throughout my whole life not to say it’s always going to be that way but how it is right now.  It is built to last so take care of yourself and it should last a very long time with few revisions!

Exercise can be a challenge – Exercise can be tricky if you have a stoma because some things work for some people while other things do not! If you are familiar with cobra stretch used in yoga to stretch your abs after a workout well I can’t do that stretch because it feels like I am stretching things I don’t want to be stretched.  If I feel like I overtrained my abs I take a rest day but stretching can cause more pain and it won’t help but might do more harm than good. I also pay close attention to how much cardio I am doing because although my body can handle some cardio it can’t handle a lot of high-intensity cardio. When I was going walking two miles it would cause me to pee my pants or have a bowel movement after a workout because it was too much stress for my body and my body couldn’t handle it. After making some changes to my workouts it made such a difference in my energy and stress because I don’t have these types of problems anymore.

Body confidence can be hard- Exercise can make you have more confidence in yourself but when you have two stoma’s on your stomach it can make it more difficult to find beauty in yourself and make body confidence. more of a challenge. Some days I don’t struggle at all and these things are just natural to me but other days I do and it really and I just want them to go away. These are the days I try to look at the bigger picture and focus not on looks and but on strength because my stoma is for functionality and is not a fashion statement! Try and do things that make you feel beautiful and boost your self-confidence with your stoma and stop doing things that don’t make you feel insecure! Personally, I don’t like to wear any crop tops or anything that shows too much skin because I am afraid of something being exposed and it doesn’t make me feel confident.

 Problems are not always simple to fix– Before my last surgery, I had to empty my bladder every one to two hours when I should be able to go threee to four so I knew something wasn’t right. My last surgery definitely helped and made some huge improvements in my life but I am uncertain if something is still going on. Time will tell! Problems with a vesicostomy have to be diagnosed by a specialist and not always are the answers right in front of you and sometimes every test you run comes back normal but it is perfectly clear something is not right. It can take up to several months before you realize something could be going on with your vesicostomy and sometimes surgery might be required but not always and it some cases medication can treat smaller problems.

You get used to feeling pins and needles– Everyone is different so I am not sure if everyone experiences this but I personally get the feeling of pins and needles in the area of my vesicostomy quite often. It usually doesn’t last more than a couple of hours at the most but as annoying as it is I have gotten used to this feeling. Rashes are common with a vesicostomy and sometimes that’s the reason it hurts so bad but sometimes there is nothing there and it just hurts. If you experience this what I find helpful is doing something else to distract yourself from the pain because it will pass and just sitting and waiting until it does will seem like it is ten times longer than it actually is.

You will get rashes if you don’t monitor leakage- Unless you have a problem with your vesicostomy that needs to be addressed by a doctor it can usually be controlled by simply emptying your bladder as much as your doctor recommends do. This sounds like a simple thing to do but so many people don’t do it and let their bladder get filled to the max before they even think about emptying. This is not only incredibly bad for you and can risk infections and all kinds of other medical problems that may need surgery but it will also cause painful rashes from the leakage. If you empty your bladder as much as you are supposed it won’t take them long and you can avoid these painful rashes otherwise get used to them!

When I had my stoma put in it was a much longer recovery time than I would have imagined and I have my moment but it’s not a decision I ever would take back or have undone. I can hang out with friends longer than three hours and have some privacy because I don’t have to worry about bringing a companion along to help me use the bathroom which some people have to do but I am grateful I do not. I know people who have been in similar situations and won’t touch certain foods because of these experiences so you are not alone! When you are disabled sometimes you have to do things that will make you uncomfortable for a couple of weeks to make your life better and maybe even give up some food but I am okay with that!  I don’t regret this decision because now I am able to be left alone for a few hours which I never would have been able to do if I didn’t have this surgery.  I have two stoma’s one connected to my bladder which I talked about today and the other is to my colon so this will be part of a two-part post. If you like this post and want to learn more check out the second part of this post. If you liked this post or have questions please let me know in the comments below.

2 thoughts on “What It’s Like Living With A Stoma

  1. Thank you, Yes when I had the bladder stones problems I would be completely cleaned out and then six weeks later I would have like ten more about the size of marbles. If they were small enough which sometimes they were not they could be removed with a laser which is a minor procedure but it’s still surgery and regardless of how minor it was, it took a toll on my body. The medication I use for bladder stones is also used for kidney stone patients and is not easy to get because it has to be compounded a certain way and regular pharmacies don’t carry it. Luckily the catheter I use is removable and is only there when I am using it so it’s not that bad and it’s only aggravating when people are getting impatient! I have had surgeries where I have had catheters stitched to me and can’t be removed so I know the feeling and it’s not fun because they pull like nothing I have ever felt before!

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  2. Oh my goodness, what you’ve been through with bladder stones… so with the ones that were removed, did more just keep coming back within 6 weeks? I also never realised there’s a medication that can go directly to the bladder to dissolve stones, that’s such a good idea, really glad there’s that because you really don’t want big stones being a continual problem.

    I don’t have a catheter but I have nerve damage that affects my bladder (there’s some kind of technical name I was given recently but I can’t remember, brain is mush) and I totally nodded along when you said about the whole “hurry up” thing when trying to pee. At home it’s not as bad because I’ll be trying to stand and sit and walk around for an hour during the really desperate times, but you just can’t do that if you’re out and about. So, so frustrating. But of course that’s peeing without a catheter, so I didn’t know quite how you could experience all of this. I’ve had catheters for 2 week periods probably 8-10 times now but never longer than that.

    And of course I have an ileostomy stoma so yep, bright red and not a fashion statement and I’d agree with experiencing the knock-on effect with mental health.

    Fantastic post, really insightful and I think you’ve done brilliantly sharing your story.

    Caz xx

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