I’m just going to tell you right now, that throughout this post, I’m going to sprinkle songs, starting with this one.
It’s time to name Captain Nameless Illness, and no his name’s not Kidd, but that was the first song with a captain’s name I could think of.
It has taken me a long time to work up the courage to write this down, but I’m going to try. I think, as I approach the anniversary of going back to work after being knocked flat by the thing I called Captain Nameless Illness, that it’s time that it not remain nameless anymore. Maybe, hopefully, writing this down might help someone else who is going through the same thing, and feels like some kind of freak. I know I did, until we figured out what the hell was wrong.
So what is this thing called? Well, it doesn’t have a quick and easy name. It’s called bile salt diarrhea.
Oh boy, now you wish you never knew. Believe me, I don’t like talking about it either. But when I was going through it, I felt so ashamed and alone, so hopefully I can help someone else.
So, what the hell is that, and how does one get that horrible-sounding thing? Well, here’s what I’ve learned. Before I had my gallbladder out, I thought the surgery was a pretty simple one. They go in through a couple little holes, take out your gallbladder, you go home and live happily ever after. You might find a few foods that don’t agree with you, but that’s about it. Bing bang boom. So I wasn’t too worried, aside from the usual thought of hey, they’re going to cut me open and rip out an organ and I’ve never had surgery before.
What I have learned that I’ve never heard before is that a few of us roll the dice and come up with this bile salt diarrhea thing. I guess, for us, too much bile goes into our gut, and acts as a laxative, and well, now you know the rest of the story.
I guess we all experience it differently, although there seem to be lots of similarities. This is what I went through. It wasn’t like anything I’d ever experienced before. It would hit me with little to no warning, and the only warning was a few seconds of really really intense pain. I would joke with Steve that it felt like demons were trying to escape, and during the time we didn’t know what this was, that was our name for it. Sometimes, even when I knew where the bathroom was, I couldn’t make it in time. Now, imagine being in a situation where you don’t know where the bathroom is, and that made it 100 times worse. And this happened nearly every day, sometimes several times a day.
Going through this made me realize just how many times I’m out and about and have no flaming clue where a bathroom is, or have no way to get to one. When I’m on the bus, even if I could pull the bell and get off at the next stop, how would I find a public bathroom super quickly after that? Keep in mind how little warning I would get. Many routes I walk have huge chunks of them that are in heavy residential areas. And, when I get into a store, I have no idea where the john is, and which one is women’s and which one is men’s. I have to ask for help, and hope that they give it immediately. One time I asked for help, and they told me to wait just a minute. No, ma’am, you don’t understand. This is urgent. When I started getting desperate and asking fellow patrons, they told the patrons “Don’t worry, we got it.” No, ma’am, you don’t got it.
Consequently, um, I had many accidents in horribly-embarrassing places, despite all my attempts to figure out a coping strategy. I tried to convince myself that if I could tell myself that the bathroom was near and break the journey into small fragments and tell myself to hold it until I got out of the room, into the hall, to the first turn, the second turn, I could make it. No. There was no psychology that could help. I had a finite amount of time and that was that.
This thing was such a tricky thing to figure out. Sometimes I felt like it was an intelligent being playing with my mind, terrorizing me. I know that probably sounds like I’m being dramatic, but I’ll try to explain. At first it always happened at the same time. When I would shift things so maybe I’d be in an area where I could run to the bathroom, it would change the time it would happen. I thought it was a new med that they introduced to me in the hospital, so as an experiment, I switched the time of day I took the med and it switched with it. I was sure that must have been the cause, so I asked to switch that med out, and the symptoms vanished for a good week or so, only to return at the utmost inopportune time of inopportune times. Then it went away again for a good couple of weeks, convincing me this was all over…only to humiliate me when I went out for the evening.
As you can imagine, this alone began to erode my life. I began to be afraid to take a walk, I first would show up late for work because I thought I was feeling warning signs, and so would stick close to home until things were taken care of. I was afraid to go to family gatherings or commit to anything, and I was too embarrassed to tell anybody anything, so started feeling isolated.
But like the announcer on the infomercial says, “But wait, there’s more!” I’ve talked a few times about how my endocrine system is pretty messed up, and I have to take medicine to regulate things that most people’s bodies just take care of. So now, because I was having all this…unplanned output, shall we say, you can imagine that this medicine was not getting in as it should, and I was once again being shown that in fact I need it, all of it, to function like a normal human being.
At first, I was tired all the time. I attributed this to the main problem I was having, because sometimes the episodes were really bad. But then I started noticing that I was having trouble focusing, or taking in more than one piece of information at once. Using a computer became difficult because there is so much detective work that goes on without you realizing it. Things like remembering the structure of a page, understanding what you need to do next, and perceiving that an error was made took so very very much effort. Sometimes I just couldn’t cope, and would have to walk away. I think it took me several days and several tries to order a simple Christmas present.
Then I noticed I was having significant trouble remembering things, to the point where I was writing really basic things down in my phone and asking Steve to be my memory, helping me keep an accurate log, reminding me to take my blood pressure, reminding me what pills I had to take, going to basic doctor appointments to take in the information as well, and help me remember to mention everything I’d wanted to. I think this was scary as hell for him, but damn did he do a good job.
For all the people who know me, just think about that for a while. People call me elephant brain and the human computer for a reason. I have a really really good memory. I remember things I don’t even need just because my brain says it can. And now, I was asking Steve to come to my doctor’s appointments in case they told me any piece of information at all. If the doctor tried to hand me too many papers, I would say “No, only give me what I need, or I will lose them.” I would take an extra trip back downtown later to pick up the extra papers just so I wouldn’t have to take extra things with me that I might misplace.
Just walking around doing day to day things was a challenge some days. I became increasingly afraid as I walked around because sometimes, at random, my mind would play tricks on me. I would see shadows that weren’t there, think I saw intersections that weren’t there, I would become disoriented and not be able to process the information that my senses were giving me, even on the most basic routes, like over to the mall. GPS became essential, not as a bit of a help, but as a step-by-step guide. If my phone died, as it had a nasty habbit of doing, I would panic.
It wasn’t just getting around that was a problem. Just doing basic things became hard. As an example, I suddenly couldn’t tell apart one pill from another. Being afraid that I would overdose on my blood pressure med by accident, I made the pharmacist put tape on the blood pressure med bottle. Now, I look at that pill and I have no idea why I couldn’t tell them apart, since it’s freaking obvious that it doesn’t resemble that other pill at all. But back then, I couldn’t do it.
Some days, I found it extremely difficult to communicate. I remember walking into the drug store to give them new prescriptions from my doctor. But all I could say was “I…have…prescriptions.” When the pharmacist asked if I was renewing a prescription, or needing a refill, all I could say, while profusely sweating because I was afraid we wouldn’t understand each other was, “No! I…have…prescriptions!” while pulling papers out of my bag. Only after she saw the papers did she understand.
If I had to get groceries, sometimes I would bring home the wrong things because it was too much effort to try and communicate what I really wanted. The effort of carrying on a conversation would knock me right out.
Every day was a roll of the dice. Some days were great. Some days were completely horrible. Some days I felt like I could walk and felt super strong physically, but had no mind, and other days, I was extremely weak physically, but my mind was racing a mile a minute. I remember transcribing a video for someone who had severe hearing loss, a task that took extreme focus and patience, but I could barely move around the apartment. And sometimes a day would start one way and would change halfway through the day. I called it spinning the wheel of misfortune. Because of this, I had to live day by day, hour by hour.
So, if anyone is wondering why I took a leave from work, that’s why. I could barely function doing basic things, let alone complex accessibility testing. Plus, I was desperately trying to log every single thing I ate, felt, went through, searching for a pattern. I wanted to find a way to control this out of control freight train.
Let me step out of these memories to ask you. Are you wondering what in hell this chain of songs have to do with each other? Well, remember back when I said our name for this problem I had was “demons?” All of those songs have references to demons in them. I could not get away from that word no matter how hard I tried. It would find me. That first video after the Great Big Sea song, for example, just happened to be on the radio. Of all the things, why would this poor Kandle woman have to get interviewed, and play her new single called “Demon”? And of all things, why a repeating line of “You’ve got to go!”? It’s funny now, but man, back then, it was evil.
While I was sick, the Grey Cup was on. And who was the halftime performer? Oh, Imagine Dragons.
And what was the theme song for Smackdown?
Fine, fine! I happened to walk in when Steve was watching this other Ring of Honour wrestling I think. And…?
Seriously, like the illness, even the word I’d jokingly picked to represent it wouldn’t leave me alone. I know that’s just my mind being a jerk, but gaaa!
The annoying part was mom and I had a pretty good idea what was going on by about August, thanks to mom googling her head off and finding that article I linked to above, but the main cause of the problem and all my wild and wacky endocrine symptoms were getting confused with each other. If I had only the main problem, maybe we would have gotten out of the woods sooner. But because I was having all kinds of cognitive issues, it sent things off on countless detours. Isn’t it fun being complicated?
Also, I don’t know how many doctors know about this whole post gallbladder thing, so of course, they send you for all the run of the mill tests, and when they come up normal, they throw up their hands and wait for the specialist.
But, because I wasn’t losing weight, which apparently is also a thing with this kind of diarrhea, the specialist was in no hurry to see me. So deeper and deeper into the endocrine woods I went. I never ever want to be as bad off as I was at the end of that November.
Thankfully, when I got to the specialist, he had a pretty good idea of what this was, and told me to try a couple of dietary changes, and if that didn’t work, he said I could start the prescription I had read about in the above article. And thank god, when I started taking it, I noticed something within 2 days.
But because I had so much false hope, I stayed off for another month, just to make sure I was back on the road to stability. Even when I came back, I was scared, and it took me months to feel like a human fully again. I was always tired, sometimes I could barely handle one-day trips to visit family, and I felt so stressed all the time. I might have gotten better faster if I didn’t have that foot problem and then the wisdom teeth, but I had no idea.
It’s a really weird condition. I had never heard of it before, but as I sort of started letting people know what was going on, it was like after I said a few magic words, several people told me they had it too. I think I can count 5 people who, after I said I just haven’t been the same since I had my gallbladder out, started letting me in on this ugly little secret. And boy, did that help. I didn’t feel like some kind of idiot.
It’s been a slow recovery, but it does feel like I’ve recovered. I’ve successfully taken trips, gone back to work, and done my usual weekend crazy packs of errands. It hasn’t been without setbacks, but holy wow, that powder is awesome. I always took my other medicines, but I was probably a little sloppy about it. Now, because the powder has to be taken a couple hours from my last med, I stick much closer to a schedule because I know this stuff works. It kind of rules my life a bit, because without it, I know I wouldn’t have one.
People ask me if I’m just going to be on this for a while, or forever. I don’t know, but I have a feeling it may be a forever thing. I would like to get off it some day, but I don’t know if that will ever happen.
There’s still a small part of me that is nervous to put this up. It screams that I’m leaving myself open to who knows what. I’m not just some faceless username on a message board. Bunches of my friends and coworkers might read this. I wonder if they’ll ever look at me the same way again. But then I think about how alone and weird I felt going through this. If this post helps one person, that’s all I can hope for.
So there it is. The captain has a name. How the heck do I end something like this. I guess, the moral of the story is ask questions, and if you have your gallbladder out and you start having this problem, and it won’t go away, this could be your problem. I should clarify. A little bit of that sort of thing after surgery is normal. But if it goes on for days, no matter what you eat, you could have joined our club. I wouldn’t wish this on my worst enemy, so I hope you never do. But if you do, you’re not alone, and I hope you can get on something to take care of it as soon as possible. Don’t let it steal half your year if you can avoid it.