This is the first post in a series of 10 posts about the symptoms I've experienced during my 10 years with MS. This is me pulling back the curtain to show you what MS looks like for one particular person with MS. This disease can be drastically different from person to person, but this is what it's like for me.
I'm not going to go in any particular order in this countdown, but I figured I might as well start with the sexiest of all symptoms: bowel and bladder problems. I'll try not to get too graphic here. To quote
Tripping on Air: "There is a fine line between TMI and NEI (not enough information). It’s hard to talk about this stuff, so we don’t, and then it’s lonelier and scarier than it needs to be."
My first definite MS symptom was constipation. Like, pretty major constipation. I have for most of my life eaten a very healthy, high fiber, mostly vegetarian diet. As a result, I'd usually been fairly regular. But then, I wasn't. It was really bad, for quite a stretch of time. I was crabby and annoyed for weeks. It was the first thing in my mind when I woke up each morning, and it was on my mind constantly throughout the day. I was miserable. Fiber, laxatives, and the like didn't really do much at all. If anything, they made it worse. I was very close to going to the doctor about the constipation. If you know me, you know that it would have to be extremely bad for me to even consider going to the doctor, especially for something so personal/awkward/uncomfortable to talk about. Luckily, other symptoms joined the party so when I finally did go to the doctor, poop wasn't the first thing I talked about.
At my first awful appointment (after months of my right leg being numb, I fell down and couldn't get up...more on this in a future post in this series), the doctor did ask me about the state of my bowel and bladder. I admitted to the constipation. The doctor suggested I eat some fruit. She also suggested that my fall was probably due to tripping over my own feet, that I was very depressed and didn't want to be there (in grad school) and that I should take Tylenol. So, super helpful overall! Despite how that entire appointment made me feel, though, it was the clue I needed. Why had she asked about my bowel/bladder when I was talking about numbness and falling? Ten minutes on Google (looking for what could be behind both numbness AND constipation) and I finally pretty much knew for sure what was going on: MS.
The next few years were challenging in all kinds of way, but constipation remained faithfully by my side. There were some periods where the situation got a little better, but it always came back. In fact, it got significantly worse when medications came into the mix. Years of trial and error to find the right drugs for my chronic nerve pain (more about that coming in a future post in this series) only made the bowel situation worse. A lot worse. The drugs I was trying and the ones I ultimately settled on all had constipation as a major side effect.
My worst memory of this time period was my 2nd Thanksgiving since the diagnosis. A day when you gather with loved ones and eat a lot of good food. Well, let's just say I was in a state of severe pain and discomfort and the idea of adding more food to my system sounded impossible and awful. I was beyond miserable.
I started to dream (or have nightmares, as the case may be) about pooping. All the time, like every night. It was on my mind more often than not when awake as well. Good times, all around. These dreams continued for years, and I still occasionally have them now.
During all this struggle, I learned that I had to develop a "bowel routine." This also took some trial and error, but having a routine became absolutely vital. It still is to this day, though perhaps not as important as it once was. For me, the only shot I have at going #2 is in the morning, after breakfast. Get up, drink something hot (especially coffee, but I'd usually drink coffee plus LOTS of tea), eat something, and sit. Being active, doing anything that couldn't be done while sitting would mean my chance for the day was blown. When my schedule required me to be up and out of the house in the morning, I would be pretty upset about it, because it meant I would be missing out on going to the bathroom. If I missed one day, my chances of being able to go the next day were very low as well, leading to an awful snowball effect. My life came to completely revolve around my bowel routine. I became almost militant about it. The exact steps in my routine have changed a bit over the years, as I've accidentally stumbled across something that works better, or realized that something wasn't really necessary. There are some more details to my bowel habits that I won't go into here, since I promised not be too graphic.
One of the worst things about my constipation saga has been that I often can't feel when I have to go, or when I will be able to go. I wasn't getting the physical clues that people normally get. I learned other ways of knowing when it was time. I've regained some of this awareness physically over the years, but it still isn't a fully functioning system or back to "normal" by any means.
When I took Aubagio for a few months earlier this year, I very much experienced the nausea/diarrhea side effects. It wasn't really true diarrhea, but it was a drastic change, and for the better. Going #2 super regularly (like even more than once a day) and with much more ease was a beautiful side effect. I stopped Aubagio because it realllllly wasn't working for me at all, and to be honest, I was a little sad about losing out on this side effect. Weirdly, though, it hasn't entirely gone away. It's definitely not quite what it was, but my bowels have never gone back to my awful baseline either. A bowel routine is still vital for me, and going first thing in the day is still pretty much my only shot most days, but post-Aubagio, it's generally been easier.
I'm pretty sure that's more than enough talk about poo. Moving right along to urination! Bladder troubles also joined me pretty early in my MS journey. After that first awful doctor's appointment where they pretty much said nothing was wrong but also were very clearly thinking it was maybe MS based on the questions they asked me, things very quickly nosedived. Lots of things got worse, and lots of new symptoms joined the party.
Suddenly I had to pee CONSTANTLY. I'd go to the bathroom, and not even five minutes later I would have to go again. And quickly. I was peeing constantly. Since I was also having trouble walking, hightailing it the bathroom as fast as possible all the time was a bit of a comedy of errors. Time passes, I get diagnosed, I go on steroids, symptoms mostly disappear but then come roaring back, and the cycle of steroids and relapses goes round and round. The bladder problems were usually part of the relapse package. My mom and I still laugh about the time we drove from Michigan to Minnesota to see an MS specialist and had to stop at literally every single rest stop or gas station the entire drive. It usually takes 12 hours, but I'm sure it took quite a bit longer with all those stops!
It wasn't just frequency and urgency, though. I also had major issues with hesitation. I would feel like I reallllly had to go, but then it wouldn't come out. I would just sit there trying, really intensely concentrating. It would usually eventually start in a weak little trickle and then stop and maybe start again. I eventually was taught the trick to gently palpate the bladder, and this would usually make it happen when combined with the intense concentration.
And then there was the not making it in time part. This was a symptom I found more horrifying than any other when I read about MS. It hasn't happened to me a lot, but it has happened. I mentioned urgency before, and this urgency is often very sudden. Like all of a sudden, you have to go, and it has to be NOW. I usually made it in time. There were a handful of times, though, where I didn't exactly. I didn't entirely pee my pants, but I did partially pee my pants on the way to the bathroom. Luckily, this was usually either in the privacy of my own home, or wasn't super obvious and I could leave and change right away.
Only one time have I completely, fully peed my pants. I had just had my oral exam for my Master's degree, a big deal experience. I stopped at home, before going out for lunch with my primary professor. While unlocking the door to my apartment, that out of nowhere GO-TO-THE-BATHROOM-RIGHT-NOW-RIIIIIIIIIIIGHT-NOW feeling appeared. I hadn't even taken two steps into my apartment before I completely wet myself. The bathroom was less than 20 steps from the door, but I couldn't make it. So I went from feeling proud of myself on a big and exciting day, to peeing my pants and cleaning up my pee from the floor. It was not the best moment.
We're not done yet! Nocturia was another big one. Frequency wasn't just an issue during the day. I would also have to get up to go to the bathroom constantly during the night. I wasn't necessarily sleeping well for various other reasons, anyway, but this certainly didn't help. And then there were all the times when I didn't wake up. Yes, that's right folks, as an adult woman I have wet the bed around 10 times. There's nothing like waking up in the middle of the night only to realize what has happened, and then you're too tired/groggy/angry to want to deal with it, but you have to. This has happened twice in hotels, which just made the whole experience even better. I don't share my bed with anyone, but I really related to
Honey, I peed the bed.
This has pretty much only happened during periods of stress, when I'm doing way too much and being overtired as a result. This is big part of why I decided to quit my job a few years ago. I still have other jobs, but the most stressful/tiring one is gone, and I don't think I've wet the bed once since then. Hooray!
On the medical response to all this urination stuff, I of course get asked about it and talk about it at every single appointment always. I've had ultrasounds of my bladder. I've been told I will maybe/probably have to add a urologist to my collection of specialists at some point. And of course, I was taught the palpate your bladder trick that I use all the time. I was also once prescribed something to possibly help with the hesitation issue, a drug generally prescribed for men with prostrate issues. My insurance company denied it because I was not a man. The doctor tried to fight for it and was denied. I didn't personally really fight for it because I didn't necessarily know that the drug would work, and I've learned that I have to save my energy for the inevitable insurance battles for the drugs I truly absolutely cannot survive without.
In sum, bowel and bladder problems are very common for people with MS. For this person with MS, they've been a pretty major part of my life for 10 years now, in varying degrees of intensity. Constipation or having a just generally sluggish, not correctly functioning waste system is just part of daily life. And bladder frequency/urgency/hesitation/nocturia/incontinence come and go.
More than you wanted to know? For some of you, probably. Sorry! But it's my life. This is what (my) MS looks like. This is stuff I have to think about and deal with all the time.
Shout out to the people in my life who let me talk about poop a lot, haha. Especially my mom, my sistar, my niece, and a few good friends. And to those among them who know about the necessity of my routine and work to plan around it!
