What Is It Like To Live With A Stoma?

Happy Spina Bifida Awareness Month! Bladder issues are common when you have Spina Bifida and every doctor manages them in a different way but most peope have some sort of stoma to make it easier. I have a neurogenic bladder like most people with Spina Bifida which is a big fancy medical term that doctors use when your bladder muscles don’t work because of a brain, spinal cord, or nerve problem. I have never been able to go empty my bladder on my own because I don’t have those muscles to do so and there is no surgery that I can have to fix this. When I was seven I had surgery where my doctors created a stoma called a vesicostomy which is a little hole on my lower abdomen that gave me the ability to pee independently. Stoma’s are not something anyone wants to have but for some people, it’s something we need to have to make our life easier. My vesicostomy helps me stay out of the hospital so I can pee without having to ask for help but it is not the cure for all my bladder issues and there are still a lot of challenges. Have you ever wondered what it was like to live with a stoma? I can’t speak for all types of stoma’s because I am not knowledgeable in every stoma in existence but I can talk about a vesicostomy which is the stoma I do have.

It requires close monitoring- When doctors created my vesicostomy they use a section of the large intestine but the downside is it makes a lot of mucus which rolls around sometimes creating bladder stones usually for those who are more active but it is possible for someone is not as active. In 2009 I had six to eight bladder stone surgeries which sometimes were able to be removed by laparoscopically but if they were too big that was not an option and it was a full-blown surgery. It was an incredibly stressful time because stones formed fast and I was having surgery every six weeks but it helped that my doctor was amazing and was doing tons of research to find a medication to help prevent them. Luckily my doctor found a medication called Renacidin that I put through my catheter that goes directly in my bladder and I basically just let it sit there until my next cath. I still probably get stones but it dissolves them small enough to where I am able to pass them through my catheter. I have been fortunate that have not had stones since being on this medication so yay for meds that work! Every six months I have to go have a renal sonogram to check the health of my kidney because kidney problems are common with Spina Bifida and to make sure I don’t have stones. I don’t get pain when I get bladder stones and the only way you will know I have them is through tests because I can get pretty sizable stones but experience no pain. A vesicostomy or any type of stoma needs to be monitored closely by a specialist because things can change and if it stops working you can’t go to the bathroom!

Some people don’t understand -I always find it surprising when I am having a medical problem and people come up to me and instead of asking how I am doing they say what have I done to cause it? Some things just happen for reason we don’t know why and how is this helpful? When I was struggling with bladder stones I had more rude comments in that year than I have gotten in my entire time blogging. I had people come up to me and say what are you doing to cause those stones and maybe if you went to a new doctor you wouldn’t have this problem. Suggesting that I am putting myself in the hospital on purpose or that my doctor is incompetent is beyond rude because I love my doctor so I never understood what led people to say that. You would think that with Spina Bifida being so common that it would be easy to find doctors but it’s not and there are not a lot of physicians who are not knowledgeable in the complexed medical procedures I have had so going to a new doctor would not have solved my problem and they would have also been scratching their head saying “I don’t know. “Some people are never going to understand what your going through because you can only educate them to a certain extent but after a certain point they will not get it. How can you understand something fully that you don’t not have? You can’t and unless you have personally experienced what I am going through there will always be things that are confusing to you. People will be rude when they see someone constantly struggling with their heath because often they think the solution is as simple as getting a second opinion. I try to ignore rude comments like these and educate because they are not helpful and should not have been said in the first place.

It takes me longer to empty- I can pee pretty fast but it still can take five to ten minutes and abled people can still go faster because they don’t have catheters to think about. I can go only pee at the speed my catheter is flowing and sometimes that is pretty fast but sometimes if something is back up it is very slow! I can use a syringe to speed things up but it’s still going to take me longer in the bathroom than it will for abled people. During the day I am faster than I am in the morning because I am emptying my bladder every couple of hours but in the morning it can take up to thirty minutes because things get back up when my bladder is fuller. This is out of my control and is something I just deal with but if I know I need to be somewhere the next day I do wake up a tad bit earlier than most people would to allow for complications.

I need to drink a lot of water- I get a lot of headaches and migraines so I like to drink lots of water to prevent these attacks because dehydration will most certainly trigger them! Since I was a child I have been told that I need to drink a lot of water because I am more prone to UTIs and kidney infections which I have been lucky to avoid kidney problems but I have had my fair share of UTI’s and they are painful! You can’t always prevent every single UTI but you can do your part and drink lots of water so at least you know your not unintentionally causing an issue.

My urine is always infected-   My urine is never clear and there is always some mucus because my large intestine has not figured out that it has a different purpose. Whenever you test my pee it will always come back postive for a UTI because my urine has so much mucus and for this reason my doctor doesn’t test it unless there is a reason to. I don’t get tested often because every single time it will say I have an infection and if we treated every single infection I would constantly be on medication. If I am having pain or am having difficulty going to the bathroom we test it and treat but otherwise there is no reason to because even though it may be infected it’s not hurting anything!

Problems are not always black and white– When I am having a stoma issue the first thing I do is measure how much urine output I am getting because I know my doctor will ask that and keep track of my symptoms. When you have problems with your vesicostomy it’s not always easy to get it diagnosed because everyone is so different and not everything is all black and white. Sometimes you have all these tests but you are not getting the results your doctor was hoping for and everything is coming back normal so the only way they will possibly find something is through surgery. It is frustrating that some things have to come to that but sometimes it is the only way for change to happen. Some stoma issues can be treated with medication but not all of them have simple fixes and it all depends on the individual and the symptoms you are experiencing.

Sometimes my stoma hurts- Stoma’s are a functional thing to have if you are unable to go to the bathroom on your own but your body is not designed to have a big hole on your stomach. Sometimes I feel pins and needles in the area of my vesicostomy which can last anywhere from minutes to weeks at a time. I always check to see if there is a rash going on and sometimes there is but a lot of the time it just hurt and there is nothing I can do about it because it’s coming from inside of me. The only thing you can really do is find a distraction and hope that it doesn’t last long or at the bare mininum lessen so you barely even notice it. The pain isn’t terrible but it is annoying to have to deal with when you are trying to get stuff done! Some people with Spina Bifida may be able to relate to pins and needle around their stoma’s but some people may not experience this and it all depends on the indvidual.

Stoma’s are not something that anyone wants but is what some disabled people need to be more independent and for some people save lives! There are many different types of stoma’s all used for different types of purposes and I don’t know anyone who jumps up and down and says sign me up but sometimes we need it to be more independent or for some to save their life. Stoma surgery is terrible and even though I had my vesicostomy so long ago I remember it like it was yesterday because some experiences you never forget. A vesicostomy has greatly impacted me emotionally because all stoma’s do but it also gave me independence that I wouldn’t have without it so I don’t regret doing it even though I would get rid of it in a heart beat if there was another way but unfornately right now there is not so I am stuck with it! I hope you learned a little bit more about what it’s like to live with a vesicostomy and understand better some of the challenges of having constant bladder issues. I am one disabled person sharing my experiences with a vesicostomy and this does not speak for everyone who has this becuase we all have different challenges. Do you have a stoma and what experiences have you had living with it? If you liked this post please be sure to check out the second part where I talk about my bowel issues.

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