When you live with Spina Bifida it is pretty common to not only lack bladder control but also some bowel functions might not work either. There are different ways you can manage this and some people might be able to take a laxative a couple times a week and effectively manage their constipation but for others, taking laxatives will not work and might cause more problems. I get constipated easily and taking laxatives a couple times a week would not work for me because my bowel functions don’t work properly and taking a laxative sometimes does nothing for me or could take up to a week to work which could potentially create some serious problems. After I graduated high school I had another stoma put in called an Antegrade Colonic Enema also in my lower abdomen (very close to my vesicostomy) that would allow me to have bowel movements without needing help. Prep was slightly different because there were no special diets involved that I can remember and you had to show up to the hospital the day before to have your colon cleaned out which is the same idea to what you would do for a colonoscopy except you didn’t do it at home because it was more involved. You couldn’t eat for a couple of days after surgery just like you couldn’t for the vesicostomy but the plus side is you weren’t in the hospital for as long and you didn’t need to go home with a foley bag. When your bowel functions do not work properly it can be stressful at times and make you question some of the decisions you make. Living with bladder problems can be stressful when you aren’t having problems and everything is working properly stress is usually low. When bowel functions don’t work it isn’t always easily controlled so I am going to talk about what it’s like to live with a condition like this.
How does my bathroom regime work?- First of all, I want to talk about how my bathroom regime work and what people think happens. I start by filling a feeding bag with 1000 ml of water and then I dump about a cap full of Miralax into it. It works by gravity so after that I connect the fluids to my catheter I then hang the bag which drains directly into my colon and usually creates a bowel movement within an hour. Sometimes people get grossed out because they think I poop in the bag and then save it. Noo!!! I am trying to remove waste from my body not put more bacteria into it and anything that I put into this bag also goes into my body so not just anything goes into it. If I did it that way it would be very dangerous and put me at a high risk of becoming very ill. I poop in the toilet, just like everyone else and the only thing that I put into these bags is water or laxatives that I use to help me go to the bathroom but nothing else goes into them. Bags can be reused for several months until they start to get dirty or grow mold which then they are thrown out. Different things work for different people but for me, Miralax usually helps me create a bowel movement within an hour but this won’t be effective for some people and sometimes people may need to use something different like baby soap or salt to help. Since you are administering these laxatives through a catheter you have more options on things you can try because you never take them orally.
It’s a very stressful thing to have- My ACE has truly helped me become more independent so I can have bowel movements without needing assistance but it can also be a very stressful thing to have if I am out at an event particularly ones with food where there is going to be a lot of people. You can’t plan for when your ace will act up and in my experience, when it does it happens at very times and people generally are not very nice about it. People often say rude comments when they think I am not paying attention so I try and distance myself at events with food so if something did happen they likely wouldn’t notice because I could take care of it before they did. Sometimes I try and not eat at events because I know not eating food will definitely not cause problems but not always does this method work because sometimes people ask too many questions and to avoid answering these questions and getting embarrassed I just have to east so people don’t think I’m starving myself and hope for the best. What people might not realize is I have a schedule and eat before these events because starving yourself can be just as bad as eating too much sugar so I never do that.
Sometimes it’s loud- Sometimes I will be out places and my ace will start making weird loud noises so people will give me dirty looks because they will wonder: What is that noise? Sometimes it smells but sometimes it doesn’t and is just loud but it’s only gas! I have no control over this or can’t make it stop and the only thing I can really do is drink more water and hope it won’t last too long which helps calm it down sometimes but sometimes it doesn’t help at all. This usually happens after meals or when I have done my bathroom regime but it can happen at any time and usually it comes out of nowhere.
The perfect diet doesn’t exist- People often will tell me that if I changed my diet it will solve all my problems. Dietary changes might help control leakage to some extent but some days I am eating very healthy but having all kinds of problems that seem endless and it kind of feels pointless. It is recommended I try and eat less sugar since it is made with that and my body will react to it but not always is this true and sometimes vegetables will cause more of a problem than donuts which makes no sense at all. Limiting sugar usually helps but sometimes it doesn’t and my body reacts to whatever I eat even if it has zero sugar or is vegetables! Sugar is in almost everything you eat and it would be very difficult to completely quit but don’t I try because some forms are necessary and can help me. Everyone has different foods they react to and what works for you someone else might need to stay away from because it only takes such a small amount to set someone off for the rest of the day. There is no perfect diet to manage this condition and the only way you will have less problems is to track what you react to and what you don’t and hope for the best.
There tons of rashes– When your vesicostomy leaks if it does it enough and you do nothing about it then there be rash but usually you can avoid by simply going to the emptying your bladder when you are supposed to. With the ACE, it’s not so simple and leakage is not as easy to control because sometimes it just keeps going for several hours or even weeks at a time, and whenever you try and deal with this there is something else. There isn’t much you can do to stop this except watch you are eating, drink more water, and hope it doesn’t last too long. If it has to turn into a big problem then you can have it plugged to get it better controlled which I did for a while but in my experience, it caused me pain so I stop doing it because I didn’t think it was that necessary. At the time I needed it but now I know what triggers me and what doesn’t and most days I don’t have a problem at all.
It doesn’t always work– My bathroom regime usually works but sometimes I will be sitting all the toilet for three hours and it doesn’t matter what I put in my body nothing happens so eventually I just have to give up. It is the worst type of stomach pain you could imagine but once you have done everything you can to try and resolve the issue there is nothing more you can do except hope moving around helps or try again in twenty-four hours and pray that the problem resolves itself and you don’t have a medical emergency. Lucky for me I am consistent and always listen to my doctor so even though I still struggle with these types of problems they always resolve themselves and never have I had a medical emergency where I needed to see my doctor ASAP. I don’t have difficulty going to the bathroom often and it usually only troublesome at the time of the month when there is more pressure being put on my colon, skipping meals, dehydrated, or some other random time that doesn’t make sense at all!
Sometimes it takes a really long time to work- I usually can have a bowel within an hour but not always and sometimes I can be sitting there for up to three hours and think nothing is going to happen and then once I am about to give up something does. Sometimes it just takes a little bit longer for things to work like hours! It can be frustrating when it takes hours for my bathroom regime work when it should only take one hour. With all the fluids you put in your body it can be a mess if you get up too soon and as frustrating as it is to waste hours out of your day it is better to sit there longer than it is to get impatient and get up too soon. You will waste even more time because now you will have to clean up a major disaster that maybe you could have avoided if you waited another thirty minutes!
Sometimes you have random unscheduled bowel movements– When I do my bathroom regime sometime everything seems like it worked really well and there won’t be an issue but it all honesty you don’t know how well it really works until your next meal. After eating my next meal I soon realize it didn’t work that well because I feel constipated and could have a bowel movement within the hours. It’s as that simple for me to just go to the bathroom when I feel constipated without getting all my equipment out and can take up to an hour (maybe longer) for anything to happen so if I have to be somewhere this can be a real problem. I have no way of knowing when or if these issues will act up right before I need to be somewhere but knowing I have these problems I can do my best to properly prepare for it. If I know I need to be somewhere I try not to do my bowel regime the day before but sometimes if I know I will be busy I have no choice. If I have to do my bowel regime the day before an event I will do one of two things to manage this I will either not eat breakfast depending on when I wake up or wake up earlier so if I do have a problem I have more time to manage it. I usually try to wake earlier because if there is going to be a problem I will realize it in my first meal and I’d rather figure that out at home than when I am out at the store.
It feels weird- Have you ever put a catheter into your colon? Many of you without chronic conditions might be a little curious as to what that would feel like and might be trying to visualize it and I wish I could give you a better description to help you better under but I can’t it’s just something you have to experience and there is a reason I put it in very slow! I have been doing catheterizations my whole life so before having my ACE I didn’t think much would change and I thought the feeling would be pretty much the same as when I put in my bladder but I couldn’t have been more wrong and the feeling isn’t even kind of similar. People who have helped me during surgery recoveries have put catheters in the wrong stoma but I have never made that mistake because of the sensation and I would instantly know if you were putting a catheter in the wrong stoma because you need a special catheter with a slight curve for my ace that sometimes sticks but with my regular catheter you just need a straight one and it goes in almost every time.
It requires more maintenance – You can have the vesicostomy and the ace surgery done at the same time if you want to and many people do to avoid needing two surgeries. I did them separately because when I did the vesicostomy surgery I was very young and would not have been ready for the responsibility of something like the ace. Unlike the vesicostomy where all you have to do to maintain is keep it clean and empty your bladder regularly for an ACE, you have to make sure you are doing your bathroom regime a couple times of the week, keeping it clean and tracking your nutrition if you want it to work properly. These things seem pretty simple and they are but not everyone does this and some people don’t do their bathroom regime regularly and claim it’s too time-consuming so they let themselves get backed up to the point they have an actual medical problem. If you know what I am talking about I want you to ask yourself this: what is more time consuming spending an hour or two a couple times of week doing your bathroom regime or recovering from surgery for a few weeks because you didn’t? Personally, I would rather stay out of the hospital as much as I can but the choice is yours! An ACE can be life-changing but if you aren’t ready and willing to do the self-care then it is a good idea to wait until you are. I thought about this for a year before I actually did it so there is nothing wrong with waiting if you don’t feel ready.
It also requires close monitoring- With any stoma things can suddenly stop working and it doesn’t matter what type of stoma you have it always requires close monitoring from a specialist to make sure there are no problems and everything is working in the way it should be and continues to stay that way. I haven’t had near as many problems with my ACE as I have had with vesicostomy but a couple of years ago it started to shrink for whatever reason and I needed to have surgery to have it enlarged. This surgery wasn’t a huge surgery but it was necessary because it was extremely painful to put my catheter in my stoma and was the only way to relieve the pain. Managing my ace doesn’t require testing every couple of months like my vesicostomy does and all that I am required to do is to have regular checkups and report any changes to my doctor.
I often get so mad I regret this decision- Before I actually did the ACE procedure I thought about it for a year but even before I had it I knew what it was but I wasn’t thinking of all the responsibilities of it or how it was going to affect my life. It was one of the best decisions I have ever made and I am glad I did it but some days I am not and just want it gone! Days when it is not working I often yell and tell myself this was a dumb idea and why did I talk myself into this? Then I have to remind myself it is okay to feel angry when things aren’t working but it’s a waste of energy to get angry over things you cannot control. The answer isn’t to have it undone but to learn to let it go because you will be much happier that way.
Everyone who has an ACE will have a different experience and some people may disagree with me and are able to easily track their symptoms while others cannot. This is my experience and it okay if yours is slightly different because we are all on our own journeys. My ACE has more stress than my vesicostomy but it has made me less independent on others and one of the best decisions I have ever made. Before this surgery, I became very constipated and there was nothing I could do to control it. It’s not perfect and I still get constipated and getting this stoma didn’t fix my bowel functions by any means but it has helped give me the ability that when I have these problems I am not stuck and can do something about it. I can remember there being days if complete misery for several hours and there being no way to get relief. I am glad I don’t have to put up with that because it was awful! Now when I feel this way I have the tools and equipment to resolve this issue so I can feel better and get back to life. Sometimes I still get frustrated with some of the challenges that I face because my bowel function isn’t working in the way they should but you could say that about pretty much any challenge I face because of my disability. I hope you learned a thing or two about my bowel problems and if you haven’t already make sure you check out the first part to this post talking about my bladder problems. If you have questions or enjoyed this post please let me know in the comments below.