When you have Spina Bifida it is common to struggle to have bladder and also bowel issues because it’s all connected. There are many ways you can manage constipation and not all doctors will do the same things because they may not be knowledgeable in the same procedures. If you don’t have severe constipation taking laxatives might work for you but I have never found that effective and it either does nothing for me or makes it so I am in the bathroom all day long. I have two stoma’s one to manage my bladder issues and the other I use to help relieve constipation. My second stoma is called an ACE which stands for Antegrade Colonic Enema and it’s basically a little hole I have on my lower abdomen that is connected to my colon that gives me the ability to have bowel movements independently. Living with an ACE can be interesting because you never know what to expect or how your body will react to it. Everyone has different experiences and no two people will be exactly the same because I know people who have had it longer than me with less issues and those who just got it with more. Living with an ACE will change your life because it will give you independence but it’s not perfect and there will be challenges. In this post, I am going to talk about my experience of living with constipation and how I manage it to get relief.
How does my bathroom regime work?- The first thing you need to understand is how my bathroom regime works because it’s not your average bathroom routine and is a little more involved. To start I basically fill a feeding bag with one-thousand milliliters of water and a scoop of Miralax. After that, I hang the bag over my head because it works by gravity and connect it to my catheter that I insert into my stoma. It’s like magic and an hour or so later I am going to the bathroom. Everyone is different and people who are not as mobile as I am may not be able to go as quickly and it could take several hours. Sometimes people get grossed out because they think I poop in the bag and then save it for next time but that is not how it works because that would be incredibly unsanitary and I would get terrible infections if I did that. Everything that I put in these feeding bags goes into my body and I poop in the toilet like normal person if I pooped in the bag I would be putting back in body what I was trying to get rid of. You don’t have to do this every single day because it’s a total clean out of your colon but it is recommened that you do it at least two to three days a week to stay of the hospital. I reuse catheters and feeding bags until they get moldy and I have to throw them out but for my vesicostomy I do not reuse catheters but throw them out after each use because you have to be more sanitary with your bladder than you do with your colon. Some people with stoma’s have bags permanently attached to them but mine is not like that and all my equipment is removed and after I use them and the only thing that there all the time is my stoma.
Some people don’t understand my dietary choices-People often don’t understand why I eat the way I do and assume I starve myself or avoid carbs because they don’t see me eat a lot, especially at parties so I am often reminded your body needs carbs. I am well aware that your body needs carbs to function and I do eat them but not when I am out. because my body reacts to sugar and carbs in general. I don’t want to run the risk of having a major explosion at a friend’s house and not have enough supplies to deal with it because that is embarrassing. If the get-together is in my own home I am not as worried and allow myself more things because I have everything I need to take care of it but when I am not home I don’t always have enough medical supplies. I limit food when I am out but I don’t starve myself because for years I thought was the solution until I realized it’s not and the solution is eating at a regular meals. If you see me not eating at a party assume I ate before the event and don’t want to eat to avoid any potential problems but if I was really that hungry I would ask! It’s frustrating when people think I eat healthy because I am on some weird diet when it’s not that at all. I have no choice because my body doesn’t process certain foods well so if I didn’t I would be in complete misery. Some days my body is doing well and I can eat more junk food and I will show no shame in eating three donuts and a bowl of pasta. It all depends on how I am feeling because days I am not feeling so great I have to be more strict with my diet.
Sometimes it’s loud- You have not experienced embarrassment until you have a stoma that makes loud noises at the absolute worst times! I have gone out places with friends and my stoma starts my weird loud noises that can smell and sometimes people will not notice or be kind enough to ignore it but other people cannot resist that rude comment. My stoma makes loud noises and sometimes it’s a leaking issue where I will need to change my entire outfit but a lot of the time it’s just smelly gas. You have to understand that it’s more embarrassing for me when this happens than it is for you so your extra commentary is not helping nor is it funny! I can’t control whether or not my stoma is going to make loud noises today but it’s something that just happens and all the diet changes in the world won’t fix that.
Some days it doesn’t work-An ACE is wonderful because it gives you the ability to go to the bathroom on your schedule but it’s not perfect and sometimes you will be sitting there for their hours and nothing! happens! Most days I can be finished and in the shower within an hour but not always and sometimes it doesn’t matter what laxatives I am using nothing is working. Sometimes if you stand up and incorporate a little movement or have a hot bath that can trigger something but some days your body is not cooperating and it’s not happening. It’s terrible because you have all this extra water inside of you that’s making you feel extra bloated that usually comes out but if it’s not working it’s a problem and it just sits there. You will be uncomfortable until your body absorbs that water and you are able to pee some of it out and that can take several hours. There is no solution to totally preventing constipation issues because it’s your body that is the problem and all you can do is wait a day and try again. I am lucky that I don’t struggle with any major constipation and that is mainly because I do my bowel regime as often as my doctor recommends and don’t allow myself to get backed up. I only hear of it becoming a problem when people go weeks and don’t give their bathroom regimes even a thought.
It feels weird- When I first got my ACE I thought the catether would feel similar going in as my vesicostomy but I could not have been more wrong. A catether going your bladder and one that goes into your colon feel very different and not even remotely similar. I can’t even explain it and it kind of felt weird at first and until I got use to it I really hated it but now since I have had it a few years it’s normal to me.
Some days it’s hard to get out the door- I wish my challenges ended at occasionally feeling constipated but that is only the beginning and if constipation was my only problem then that is a good day.. My ACE regularly leaks and sometimes it’s not that bad but other days I think it hates me because it a full explosion requiring me to do a full-on wardrobe change. I can’t tell you how outfits I have ruined and how many times I have changed into half my closet and it’s only ten a.m. Sometimes it’s hard to get out the door because I will be doing good all morning but five minutes before I need to be somewhere my body decides it’s time to have a bowel movement. It’s like my body knows when I need to be somewhere and it’s like you didn’t want to be on time anyway! I am never happy when this happens but when I am home and don’t have to be somewhere I don’t mind it as much but kind of expect it to happen. It’s only annoying to me when I am walking out the door and my body decides it wants to be a pest as I am leaving. Why couldn’t it act up an hour ago? In previous years I would skip breakfast when I had to be somewhere to avoid unnessary bowel issues but now since I have frequent headaches and migraines I can’t do that without triggering an even bigger problem. have missed church services and had to cancel appointments because of a leaking issue or unexpected constipation that happened so randomly and I didn’t see coming. It’s frustrating because you can’t plan for that but at the end of the day you just have to remind yourself it’s out of your control and to just deal with it.
Living with an ACE can and will change your life because it will give you the ability to relieve constipation without assistance. It also can be very stressful because every time you eat something you have extreme anxiety over whether or not that food is going to like you today or if it’s going to make you incredibly constipated and make you miserable for the rest of day. I got this procedure not because I was truly fond of having a second stoma but I needed a way to relieve constipation that I could do myself because there really wasn’t one. Laxatives don’t work for me and I can’t always rely on someone else to be available to help me go to the bathroom. I still sometimes struggle with constipation and always will because doctors can fix my condition but at least there is something I can do about it. Sometimes when I am really constipated I can’t get complete relief on the first try and it takes a few times but I at least I have a way where I can get some and have bearable pain which was very hard to do before. I have had a lot of challenges with my ACE and it took me years before I was able to figure out what I could have and what I couldn’t so if you are struggling with this be patient because sometimes it just takes time. . If you missed last week’s post about my bladder issues you can catch up by reading it here. Do you have an ACE and how do you manage constipation with Spina Bifida?
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