Unfortunately, my gastroenterologist is now starting to suspect that my IBS may actually be something more than IBS. I have been dealing with my severe IBS-C for more than 20 years, so this is both not surprising and very frustrating. (Yes, I am only 26. I literally cannot recall a time in my life that I have not been constipated unless I was horribly ill and afflicted with diarrhea instead.) If I was told to name one singular illness that causes me the most negative impact on a daily basis, and that I have to most carefully plan my life around, I would choose my IBS. Yes, above the POTS that makes me so dizzy I can’t think straight, above the fibro that can make a gentle breeze feel like I’m being sand blasted, above the allergies that make my eyes feel like they’re full of sand, and above the asthma that can make me feel like I’m trying to run a marathon on top of Mt. Everest. My IBS literally runs my life and it is relentless.
(Disclaimer: This post is going to talk about poop, just in case you hadn’t figured that one out; you might not want to be eating.)
What is IBS? Well, the name is extremely misleading. IBS itself stands for “Irritable Bowel Syndrome.” Now isn’t that a happy sounding illness. So my intestines get a little cranky, big whoop. Right? Oh, but you are so wrong. Have you had food poisoning? The kind that makes you have uncontrollable diarrhea? That makes your stomach feel like a giant fist has decided to take up residence in your stomach and squeeze your intestines into a ball and contort them into shapes they just shouldn’t make? Well guess what, that is what an “irritated bowel” feels like. Now imagine that for absolutely no reason other than your intestines just decided they got a little cranky all of a sudden, like a toddler throwing a tantrum. Actually, pretty much exactly like a small child throwing a tantrum. And it’s on a spectrum. Anywhere from age 10 (mild) to newborn with colic (extremely severe). The younger means the more tantrums means the more severe the case. Some people have very few “flare ups” and can live a fairly normal life, some people end up on disability and live a life chained to their toilet.
Now, it’s not always diarrhea, though it appears to be the more common form of IBS. Well, IBS-D (diarrhea predominant). Some people have specific triggers that will trigger one type and then some triggers that will trigger the other kind, so they just have a “general IBS” (like a good friend of mine). Mine, however, is IBS-C. I have constipation predominant IBS. I don’t think this one tends to put people on disability as often, even in extremely severe cases, simply because I am not having to run to the toilet every ten seconds and don’t run the risk of gross dehydration and multiple hospitalizations because of such. I can leave my house, usually. However, I do have symptoms that people cannot see that make life extremely miserable. The only person I ever let “see” these symptoms is Dan.
What are these symptoms? Well, let me try to explain a few.
- The feeling of a knife being stabbed into my abdomen, usually just to the left of my belly button. I am not exaggerating. It will get so bad that I will fold in on myself and cry. This always scares Dan because of how high my pain tolerance is with everything else. It is caused by my intestines trying to squeeze down on constipation to move it through my system. Sometimes, though far less often, it can be caused by gas that is trapped behind constipation and is deforming my intestines.
- Extreme gassiness. It gets so bad that I will have to ask for a pass from Dan from saying “excuse me” when I pass gas because it is literally happening every two seconds for over two minutes. This is by far the most embarrassing symptom. I have actually turned down invitations to attend things I really wanted to do because I couldn’t control my gas. If I try to hold it in, then I get extreme pain and discomfort in my abdomen, and my abdomen will visibly swell. If I try to just stay in a restroom until it passes, I will cause my hips and back to shift out of place and there will be big problems to work out in physical therapy because I will be in there too long (these attacks usually will last for over an hour). This is not related to what I eat.
- Intestine spasms. I will go to the restroom, sometimes just peeing, and suddenly my bowels will start to spasm. These HURT. They hurt a lot. The muscles will suddenly decide they need to get something out, or they pretend they need to. However, the spasms are just completely uncoordinated. Every now and then, they do actually result in something coming out, so I can’t get off the toilet until they subside, but usually they are just a bunch of random spasms. This usually results in my trips to the restroom taking about thirty minutes. Sometimes I’ll even space out and forget where I am (especially if I’m really POTsie that day). This is part of why I try to avoid using the restroom anywhere buy my own home. I really can’t control when these will happen. Sometimes I can force these to come to an end by pushing or clenching pretty hard, but I’m always worried that I will somehow damage something.
Those are the non-stool related symptoms that most impact my life on a daily basis. I also have to deal with: delayed gastric emptying (pretty much gastroparesis but caused by full intestines instead of paralysis of the stomach, but it has the same symptoms), visible bloat that varies constantly and is painful to touch that makes me appear overweight even though I actually have a small waist, constant nausea, and lack of appetite.
Then there is the obvious one: constipation. I don’t have some constipation, either. I didn’t realize my thought of what constipation was and what most people thought of constipation was different until I needed Dan to fix the toilet once either.
First, some background.** I have some massive emotional/mental trauma in regards to the restroom thanks to my IBS. My parents didn’t understand it and were extremely frustrated by it while I was growing up. As I said, I’ve had it my whole life. Because of such, they didn’t handle it well. As a kid, they would stand in the restroom with me (while I was sitting on the toilet in immense pain) and yell at me about how I wasn’t trying hard enough while I choked down milk of magnesia and tried to push it out. It hurt, and they were telling me I wasn’t pushing I was clenching and I needed to push and how if I would just drink water then this wouldn’t keep happening but we weren’t going anywhere until I was done even though my feet were asleep and my butt hurt from the seat. Yup, a bit traumatic. Then, as I got older and the problem continued, I got banished from the downstairs bathroom, and was only allowed to use one bathroom in the house, and I had to break up the poop with popsicle sticks or corndog sticks or fish it out with trashbags and throw it away in the large trashcan (by the way, you could only get to the large trash can by going out the front door and walking across the entire front of the house to get to the trash can on the opposite side of the house from the front door and my parents don’t live on a super isolated street) if the sticks weren’t available because I wasn’t allowed to clog the toilet at all anymore, and I wasn’t allowed to walk outside at night so the few times I was out of sticks at night and there weren’t any bags in the restroom without holes I actually used my bare hands because I was so afraid of getting in trouble and that smell just doesn’t wash out until all your skin falls off and that much scrubbing really hurts over the course of a week. By the way, the only restroom I was allowed to use is the only restroom in the house with a working shower. I got really good at washing poop out of my underwear. They would force me to choke down Metamucil and Citrucel (both make me WAY worse, as I’ve discovered, even at half doses which they were having me do full doses), and I was drinking more than eight glasses of water (which I actually hate). I ate bean burritos for lunch every single day, which is also a lot of fiber, and I did actually get a decent amount of exercise. They would take me to the doctor and be like “she’s constipated because she isn’t doing the right stuff” and the doc would be like “okay, then she needs to do the right things” and I’d just be all weak voiced on the table and say “but I am” and no one would listen. It got to a point where I actually thought this was just how it had to be forever. Until:
I had the flu or something, or maybe it was just late, I can’t remember. I was really exhausted and didn’t feel that well. I was staying at Dan’s house (I pretty much lived there). He lived in the basement of the house, so that toilet was really finicky, which I was well aware of, and I’d clogged it several times. The plumbing had a root problem thanks to the tree in the front yard so it was just finicky. Anyway, I felt the telltale cramping, and I went to the restroom. I was in there quite some time, and then I came out. I hadn’t flushed, and I asked Dan if he had a grocery bag (which is what we use for trash bags in all but the kitchen trash cans, by the way) that didn’t have a hole in it. He looked at me like I was completely insane, and asked why. When I turned the color of a red crayola and then said, sheepishly, “Well, it’s quite large and I don’t want to clog the toilet, so I was just going to go throw it out…” he looked at me like I had just requested a lobotomy and said, quite blatantly, “Clog the toilet.” I started stammering nonsense about how I really didn’t want to and if he just had a bag it would only take a second and it really was okay, and I think I maybe started to cry and he looked terrified. He was completely confused. Suddenly, I was confused. Why was he telling me to clog a toilet he was always cursing about having to unclog and did he just suddenly tell me to use the plunger to break it up?! (By the way, the plunger was not even kept in the restroom at my parents house but in the garage and it was not supposed to touch poop.) I felt like I was in another dimension. Suddenly he was telling me to sit on the bed. I think I was pale, because I was shaking and getting woozy, which normally happens after I use the restroom. Then I was mortified because, before I could stop him, he was in the restroom! We hadn’t even been dating very long and he was going to see my poop! But it was too late, I could hear him doing something with the plunger. It took several minutes, but then I heard the toilet work normally. He washed his hands and came back in with a VERY concerned look on his face: (him:) “Are you okay?” (me:) “What?” “Are you okay? Do we need to go to urgent care? Do you need anything?” “What are you talking about? I’m fine, I’m just thirsty and tired.” “You’re sure? You aren’t going to pass out?” “It’s 2am, I’m exhausted.” “But, you’re fine? That was huge and there was blood…” “Um, I was just a little constipated. That’s normal… isn’t it?” “WHAT?!” “I think we need to talk…”
I was so used to being HORRENDOUSLY constipated all the time that I thought NORMAL constipation was being so constipated that you bled when you pushed it out. Yes, I thought you were only constipated when you were so badly constipated that you tore your anus. I thought anything small enough that it came out without blood wasn’t constipation. And, remember, I said that I pretty much can’t remember not being constipated. Yes, pretty much every single time I pooped I bled for TWENTY YEARS! The time he freaked out wasn’t even all that big, honestly. I’ve had just a few spots of blood on toilet paper, which I’m always thankful for… because I’ve also bled so badly that I’ve had to put panty liners my underwear to be sure I didn’t get blood on my pants from anus. I have bled so badly from pooping that I’ll get blood on toilet paper for several days (luckily, it only comes off on the toilet paper). I will be so constipated that the muscles in my pelvic floor simply aren’t strong enough to help get the poop out and I have to help by squeezing on the skin to reshape the fecal matter inside of me. I have had stools that are one solid piece that is the width of my wrist (I have tiny wrists for an adult, so about three inches wide) and at least six inches long, and completely solid, and that is completely normal for me. I have gone three weeks without having a bowel movement, and not noticed until suddenly I have an urge to go and the dread creeps in and I start thinking about when I went last and then the fear creeps in as I start to think about how much it’ll hurt and how much trouble I’ll get into. TMI, but it’s the truth.
Why am I sharing this? Because I have felt so helplessly alone and I thought it was NORMAL. I was trapped in hell for twenty years and I don’t want anyone else to be trapped there. I have developed an actual fear of using the restroom. I’m not just afraid of using the restroom in public, I’m actually afraid of going to the restroom, period.
I’m not just afraid of pooping, I’m afraid of peeing because I don’t know if suddenly my body will decide it wants to poop. I don’t actually have complete control of my bowels, so it’s actually a very real fear. I also will suddenly get a very strong “I must find a restroom NOW” sensation when my bowels do decide to move, in which I have exactly one minute to find a restroom or I will risk pooping in my pants. It’s the most terrifying part of this whole thing, because I’m always afraid it will happen when I’m out. I think it’s also a result of twenty years of untreated bowel and sphincter stretching: I think it broke my nerves. Thankfully, Dan knows about it and will find me a restroom if I say, “I need a restroom right now” and won’t let anyone try to make me hold it; he recognizes the terror in my eyes and knows exactly what it means.
Dan is the first person that truly listened. He was the first person I let past the wall I’d built to hide my digestive distresses. He was the first person that said “this isn’t normal, I think you should see a doctor.” Because of him, I finally took the steps necessary to start getting help. It’s taken way too long though. I only got my first IBS diagnosis at Metro and was given antispasmodic drugs because of stabbing in my abdomen around exam time, but I brushed it off after I could manage it again when I quite school. I didn’t go to a GI until I started choking on food, then decided that “you know what, enough is finally enough and this stomach stuff is getting ridiculous” because it started getting worse and I trusted my doctor.
Unfortunately, this post is the first time I have been able to fully disclose all of this to anyone other than Dan because of the trauma. But I need to. I know that I can’t be the only one that is living in their own person hell with IBS or something similar. As a culture, restroom discussions are taboo. I know it’s unsanitary and uncomfortable, but unfortunately, it makes people like me suffer for far longer than necessary. Why is it that we can joke about married couples and best friends not shutting doors when we pee/poop, but we can’t talk about serious medical conditions that involve the digestive tract? I think it’s time we talk about it, and without the snickering.
** I love my family. I truly deeply love my family and would gladly do anything for them. There were some things in my childhood that caused trauma for me as an adult, but part of being able to move past them is accepting them. Writing about it is part of that acceptance. I only put it on the internet as part of this blog post because it is an integral part of understanding the entire story and my mental issues involving the restroom.