My Anus Horribilis

This post isn’t really about Crohn’s, but I figured I’d write about it anyway, because it is digestive system related.

I’ve had a cough since about June 2013, so nearly two years. This cough happened nearly every day after I ate, especially in the morning. The cough improved after about a year, when I stopped drinking Crystal Light. It’s still around now, but much less severe. I’ve had a bunch of x-rays and breathing tests, and everything so far says I’m fine. My doctors seem to think it’s most likely acid reflux, and that’s what the esophageal pH test will tell us. I was on Prevacid for a while, and it seemed to help at first, but it never made it go away completely.

So my doctor booked me an appointment for an esophageal pH test. Basically, they put a tube into your esophagus and keep it there for 24 hours while you go about your regular day, and the tube measures the pH level in your esophagus. The test will tell you if you have acid reflux.

My appointment was for yesterday at 12:45. You’re not supposed to eat before your appointment, but since mine was so late in the day, I was allowed to have a light breakfast at 6:30. The morning before the test, I felt so hungry, even though I wouldn’t have eaten lunch until at least noon most days anyway; just knowing that I couldn’t eat made me want to eat.

I arrived at the hospital and checked in for my appointment. This particular lab was tucked away deep in the hospital, near what seemed to be patient rooms, and there was no one else in the waiting room. This indicated to me that this was going to be a scary, long appointment, because most other tests I’ve gone to have had tons of people in the waiting room, in and out quickly.

The nurse called me in and asked me to sit down in a chair to answer some questions, mostly about my symptoms, past medical history, things like that. She had me sign a form that said I agree to let them do this test, and also I agree they can give me blood products if I need them. That bit scared me; what could happen that they would need to give me blood? (Thankfully, I didn’t find out.)

She asked me to sit on a bed that was raised in a sitting position. She asked me if I had any problems breathing out of my left nostril, and I said no. She told me she was going to spray something in my nose to freeze it, and it would smell bad. I don’t think that part hurt or anything, and it didn’t really smell bad. She then put some gel in my nose, I think to hold the tube in place.

Then the fun part. She put the tube up my nose. My eyes started watering and my nose started watering and I started coughing. She had previously given me some kleenex and told me to cover my cough, but when it actually happened, I didn’t really feel like I had control over anything I was doing. She politely reminded me after a minute or so, I apologized, and covered my mouth with the kleenex. She told me to look at the clock and watch the second hand and try to keep about fifty seconds between swallows. After a minute, she said something like, “I’m not sure if you’re aware of this, but you’re still swallowing every 2-5 seconds”. She told me to focus on my breathing and gave me a few tips to try to keep from swallowing, like touching my tongue to the roof of my mouth or sticking my tongue out. The latter seemed to help, and soon she was telling me it was okay to swallow now.

While I was trying to breathe, she was monitoring things on the computer. After a while of me swallowing at proper times, she put a syringe filled with water in my mouth and had me swallow that. She did this a few times.

Then I think she told me she was going to remove the tape keeping the tube in place and take the tube out quickly, after which I remarked, “That was kind of gross”. It was much easier coming out than going in. She said the tube that I would wear home was smaller, and I would do fine with it. I kind of wished she would have just kept the first tube in so I wouldn’t have to go through that again, but she was telling the truth that the smaller one was easier. I didn’t get a good look at the big tube, but the small one was maybe 2mm wide; the big one couldn’t have been too much bigger, considering the size of my nostril, but it did make a big difference.

She then wrapped the tube around my left ear, so that if I pulled on the wire, it would tug on my ear and not my nose, and then she plugged the other end of the tube into a handheld electronic device. The device had a long strap that went around my head and under my arm, like a messenger bag.

She had me move to the chair, and then she taught me how to use the device. The device had an electronic display and four buttons, one with a pill on it, one with a bed, one with food, and one with a heart. The device is pretty self explanatory: press the bed button when you lie down, press it again when you get up; press the food button when you start eating, press it again when you stop; press the heart button when you experience symptoms (which in my case was coughing). She didn’t instruct me to use the pill button. She also gave me a clipboard with a paper where I would log each time I pressed the button. If I ate something, I would also write down what I ate.

She gave me another paper with instructions on what not to eat: no dry lettuce, because it could stick to the tube. No citrus, acidic, or juice type things, because they want to measure your acid, not the acid of the food. They encouraged eating chocolate, caffeine, and greasy foods, and things that tend to aggravate your symptoms. You’re mostly supposed to stick to your normal routine.

She told me if I happened to vomit or start coughing violently and coughed the tube up, I would know because it would come out of my mouth. I was waiting for her to say, “And then you would call 911”, but instead she said to just take it out of your mouth, take the tape off your nose, and throw the tube in the garbage. This was all very comforting. (Not.)

Before I left, I apologized to her for being so dramatic when she put the first tube in. She said not a problem, and that I was a good patient, and that I wouldn’t believe how some people react.

Home I went, with instructions to come back at 10:00 the next morning to have the tube removed and to return the device. I had planned on working on my computer from home most of the day, but I didn’t much feel like it. I just kept thinking about this foreign object down my throat, and did it move? Is it supposed to feel like that? I decided to take my mind off it by watching American Horror Story: Asylum, which is maybe not the best choice for someone who is squeamish about medical things on a normal day. I pretty much planted myself on the couch from the time I got home until the time I went to bed (which, in retrospect, was probably a bad idea, because I didn’t cough too much).

I had a sandwich for lunch, as I usually do. The paper said to chew your food well, so it probably took me ten minutes to eat it. I tried some banana bread and water (my usual afternoon snack) later, but didn’t eat much of it, because I was worried that the tube didn’t feel right. For supper, I had scrambled eggs with ketchup and a chocolate milk.

The device had two numbers on it, Prox pH and Dist pH. I have no idea what these things mean, but I noticed they normally stayed around 7 or 8. When I ate the eggs, it went down to about 5, and then when I drank the milk, it went back up to 7. I mentioned this to the nurse, and she said that it was probably the ketchup. (She also said that she eats ketchup on her eggs too, and everyone else seems to think that’s weird.) I noticed the numbers seemed to go up when I was walking around, and they also briefly increased when I burped, which happened a lot. I’m not sure if that’s because of the tube or not, because I’ve been pretty gassy lately anyway.

I had some ice cream after supper, because I’ve noticed I often cough after eating ice cream. Of course, it didn’t happen this time. I coughed a few times throughout the day, but I think that was more due to the fact that I was thinking about the tube being there, and not because I would have had to cough anyway. I’m not sure if I was purposely surpressing my cough because I was worried it would hurt, but I don’t think I was.

Normally I have a shower at night, but since I had this electronic device attached to me, I wasn’t allowed to.

I tried not to talk too much because it didn’t feel great when I did. I think I kept my mouth slightly open most of the time. Around 9 pm, my throat was feeling very dry, and talking felt especially bad, so I had half a bottle of water, and I felt much better after that.

I didn’t get much sleep at night. I also slept (well, tried to) on my back most of the night, which is not how I usually sleep, so that probably affected the test. I usually sleep on my stomach, but I didn’t want to with this tube coming out of my face. I woke up around midnight to go to the bathroom (which is normal, due to my Crohn’s). I noticed the Dist pH was at around 2 before I got up. At around 4 am, I woke up, looked at the clock, went back to sleep. I woke up again, figured it must be about 6:00 now, looked at the clock, and saw it was 4:30. After that, I slept on my side, and then I must have managed to actually get some real sleep, because my alarm at 6:30 woke me up from a dream.

I found when I woke up, I could no longer feel the tube in my throat. The day before, I could feel the tube fairly often throughout the day, and especially when I swallowed. It didn’t hurt; it just kind of tickled. I was a little worried that I had swallowed it or something, but the monitor seemed to be working as it had before, so I guess not. I also felt pretty icky, like I do when I wake up when I have a cold.

I went through my normal morning routine, eating Cheerios and chocolate milk at around 7 am, but chewing extra well. This is usually when my symptoms appear, but unfortunately, on the day I really wanted to cough, I didn’t end up coughing much. I even used the super foam toothpaste that always irritates my coughing, and even that didn’t cause major symptoms. A few times, I did get some saliva in my mouth, which often happens when I cough, but nothing major.

I got some actual work done in the morning, and then left for the hospital to have the tube removed. The nurse looked over my log of food and symptoms and asked me a few questions. She asked me to unplug the tube from the device and take the tape off of my cheek. She then came over to the chair to remove the tape and tube, and I wondered why she wasn’t going to get me to sit in the bed first. Turns out it was no big deal at all the remove the tube. She gave me a special cloth thing to help remove the tape; it smelled like nail polish remover. Then I went home on my merry way.

I’m feeling fine now, but a bit tired. My throat’s a little sore, and I’m hungry. But overall, not too traumatic of an experience; putting the big tube in was the worst part, and everything after that was pretty easy.