why IBS is BS, plus fun times with upper endoscopies

In 2010, I had two upper endoscopies and one colonoscopy. Since the colonoscopy procedure is a bit more complex and requires a nasty clean-out-your-system cleanse, I’m saving it for its very own long, detailed, and utterly disgusting post. (I know you can’t wait.)

The medical term for an upper endoscopy is esophagogastroduodenoscopy.
Let’s break that massive word down:
*esophago = esophagus
*gastro = stomach
*duoden = duodenum (the first part of the small intestine)
*scopy = to see (suffix meaning “observation or a visual examination”)

An upper endoscopy is a procedure that enables a gastroenterologist (GI) doctor to visually examine the upper digestive system with a tiny camera on the end of a long, flexible tube. Sounds pretty straight forward. Kinda is.

Months after my kidney stone surgery, I was still having chronic pain of multiple kinds. There was the usual cramping and sharp pains in my intestinal track, the stomach aches that were pretty constant, regardless of what I ate, and a hot burning twisting throb at the bottom of my rib cage. I was having a hard time getting much done. I dropped the one course I was supposed to take and registered for independent study credits just to keep myself enrolled in my Ph.D. program and working towards something. I spent a lot of hours on the couch with a heating pad pressed against my gut.

What was most upsetting was that I really wanted to believe that the pain I had been in before the holidays was all related to kidney stones, despite the fact that my urologist told me it was very unlikely. I still wanted to believe it. I wanted to think that once the stones were gone and the ureteral stent got yanked out, I’d be all good to go.

My doctor put me on medication to deal with the constant pain. I started on hyoscyamine, prescribed for treating stomach and intestinal problems like cramping and irritable bowel syndrome. It’s like a muscle relaxant for your digestive track: it works by decreasing acid production in the stomach and slowing down or relaxing the stomach. When that didn’t help, we tried dicyclomine, also used to treat irritable bowel syndrome and relieve muscle spasms in the gastrointestinal track.

While both of these medications made me a lot more relaxed (to do the hard work of laying on the couch with a heating pad all day), they didn’t touch much of the chronic pain I was having. This is when I started to realize that my doctor really didn’t know what was going on with me. She kept telling me I had irritable bowel syndrome and that the stress of graduate school and living in a house under constant construction was giving me gastrointestinal issues and once I could find ways to relieve the psychological stress, my body would follow suit. Being the dutiful researcher that I am, I started reading as much as I could on irritable bowel syndrome, which is basically the blanket term for digestive-issues-we-don’t-understand.

I finally went to see a GI specialist. I spent a full hour with this specialist, going over every inch of my health history, my family’s history of Crohns disease, what I was and wasn’t eating. Then she told me I had irritable bowel syndrome. I asked her what that meant.

Her exact words: “Honey, when we tell you that you have irritable bowel syndrome, it just means we have no idea what you have. It doesn’t really mean much of anything.”

Awesome.

Here’s a heads-up on that one: In my experience, if you’ve been diagnosed with irritable bowel syndrome, it just means you have bowels that are irritable. Moody bowels. They don’t like stress. They don’t like certain foods (but you aren’t always sure what ones). Technically, IBS is about your large intestine (colon) getting all pissy about the food you’re eating, the booze you’re drinking, and the stress you’re under. But a diagnosis of IBS doesn’t really tell you much more than that. This is what frustrates me about modern medicine: my doctor wanted to put me on medications to try to relax the pain away without determining where the pain was coming from in the first place. If our bodies are tightly connected systems, shouldn’t there be more to find out here? Being told by my doctor that IBS is a “very typical issue for most graduate students” is one thing, but having IBS and intense pain chronically for months at a time to the point of being unable to operate normally seems like something else. Or at least, something more. Sure, IBS is real and it sucks. But being told you have IBS and then being told IBS means we don’t really know what’s going on is not very comforting.

My GI doctor decided I needed both an upper endoscopy and a colonoscopy to see if anything was going on in my insides, but I couldn’t get in for the procedure until July. It was May. I was tired and loosing weight. My GI insisted I start drinking protein drinks. She told me to stay off dairy and anything else that bothered me. (Which was pretty much every thing.)

The first week of June, I had a major bike accident. I broke both of my elbows, broke off two of my front teeth, and suffered a major concussion that had me blacking out once every 24 hours: I would wake up on the floor, C half holding me with a look of panic on his face. I’m skipping the bike accident details for now. I just wanted to include them because I had to go to my upper endoscopy and colonoscopy with broken elbows and lay on the bed in my slings, which I’m sure looked ridiculous.

There’s the skinny on upper endoscopies:
*There’s no real cleanse. You just stop eating and drinking at midnight. In the morning, I wake up thirsty and apprehensive.

*At the office, I sat in the waiting room with a bunch of tired looking people who are either waiting to also have tubes pushed down their throats or have just suffered the world’s worst colonoscopy cleanse and look like they would rather lick a toilet than go through it again. (That might be extreme, but seriously: it’s hard.) Some of these people are in their 50s and 60s are probably getting routine check-ins. Some of them are probably there for scary things like colon cancer. This makes me anxious.

*When the nurse calls me back, I stand in a freezing cold room while she takes my vitals, trying not to cringe when she touches my broken arms (which are not casted). I have C help me change into a super flimsy gown and sit in the freezing cold while she cheerfully asks me what feels like a million questions about what I did and did not eat or drink in the last 24 hours. She puts an IV in. She lets me put my sling back on my left arm, which is more broken than my right, where the IV is.

*I’m led into a hallway full of curtains. Behind these curtains are hospital beds, some empty, some with sleeping people who have just come out of procedures. I lay on one of the beds, holding my half slung arms against me, and wait, listening to people burping and passing gas and nurses softly saying “yup, that’s okay, it’s all air that has to come out, just relax.” Here’s what they don’t tell you about these procedures: When you’re done, you literally lay on a bed in a room full of other people laying on beds, half unconscious and so relaxed that air is coming out of their bodies and you realize that you are also one of those people, doing that. Procedures like endoscopies often require doctors to put gentle air pressure into you esophagus to inflate your digestive tract so the endoscope can move freely and the folds of your digestive tract are more easily examined. This explains the room full of people and all the air moving around.

*The room where the procedures take place is full of machines and screens and equipment. There’s lots of beeping and air compression noises. The nurse tells me that I will be awake for the procedure, but I won’t know I’m awake because of the sedative. I will talk to them, but I won’t remember most of it. An assistant asks me to open my mouth so she can spray anesthetic to numb my throat in preparation for inserting the long flexible tube. She also puts a plastic mouth guard in my mouth to hold it open. I don’t remember being asked to swallow the scope as it went down my throat. I don’t even remember it being inserted. There was nothing painful about it.

*When I came to, I was not in the room full of farting burping people. I was laying on my side and there was a large black tube in front of my nose. At the end of the tube was my other GI doctor, and he was moving the tube around. I panicked. I started to cry. There’s a figging massive black tube down my throat and I’m not supposed to be awake for this part. I felt myself let out the world’s largest belch. It felt like it echoed through the black tube. I could hear lots of talking. Someone rubbed my arm and said “It’s okay sweetie, just let that air out, that’s supposed to happen…”

*When I woke up again, I was in the room full of farting burping people. My throat felt a little sore. I felt like I was on a million muscle relaxants.

*C came in with a nurse. When you are put half-under for upper endoscopies, you are required to have someone with you. They don’t have to stay, but you can’t drive yourself home because of the effects of the drugs post procedure, so someone has to be there when it’s all over to take you home. I don’t remember much else from that day except that the drugs must have really hit me hard: when I got home, I went straight to bed and slept for 3 hours.

*Not everyone is put under a sedative for the procedure. Some of my family members told me they were fully awake when they had their endoscopies. A friend of mine just had one done and she went straight from the doctors to eat a big lunch at a cafe and then went home and took a nap. I’m not sure why they sedated me so much, but it’s also possible that given how sensitive I am to drugs, my body just passed right out from it.

*Results: They found damage, but not the sort they fully expected. At the base of my esophagus, there was deterioration from acid reflux. This explained some of the burning pain I was experiencing at the base of my rib cage. They told me it was so low in my esophagus that I probably didn’t realize that some of the pain I’d been having was related to acid reflux. That’s all they found.

*I was told I could change my diet to help with the burning sensation from the reflux, or I could just take medications and eat whatever I wanted. I was sent home from my endoscopy with a prescription for the cleanse powder I’m convinced is manufactured in hell.

*I had a sight sore throat for a day. The stomach pain continued.

*Part 2: Colonoscopy and surviving the worse cleanse of my life thus far.