My Anus Horribilis

Last week, I had an appointment with a new gastroenterologist. The reason I have a new gastro doc is because back in January/February, I was doing pretty bad. I wasn’t sure if I was having a flare-up because I also had the flu around the same time. I don’t know if I’ve ever had the actual flu before; this time was really bad. And frustrating, because I was missing classes, which makes me stress out, which makes me even more sick. I tried going to my linguistics class, but I had to sit down in the hallway halfway there, and then I just ended up going back home. My parents came to see me in residence just to make me scrambled eggs so I would eat something. It really, really sucked.

So I made an appointment with my doctor at school. He thought I was having a Crohn’s flare-up, since I guess I was having Crohn’s symptoms as well. I don’t remember. He knows that I can’t swallow pills, and he has been pretty good about that in the past. He says that he couldn’t swallow pills either until he was twenty. But now he says, I’m twenty-one, so he doesn’t have as much sympathy for me.

Anyway, he prescribed me a liquid called Pediapred, which I deduced was Prednisone for kids. I didn’t know exactly what Prednisone was, but I knew it was a medication used to treat Crohn’s, and pedia- is like pediatrics, which is kid doctors, so, yeah… Prednisone for kids. He also prescribed me a suppository, but since I wasn’t sure what part of my bowel had Crohn’s, he didn’t know if it would work. So, he recommended I see my gastroenterologist.

It always takes awhile to get an appointment with either my family doctor or my gastro doc, so I always end up booking an appointment when I’m having a flare, but then when I actually go see him, I’m fine. So, sometime in February I saw my gastro doc. I told him what my university doc had said and showed him what he had prescribed for me. My gastro doc said the suppository wouldn’t work, since my Crohn’s is “higher up”, and he said he had never heard of Pediapred.

So, basically, I was diagnosed with Crohn’s in December 2009, and had surgery. A few months later, I had a colonoscopy, and have seen my gastro doc every few months since then. He had never put me on any medication because I wasn’t feeling that bad, and he figured the side effects of medication could be worse than what I was going through (which was mostly just pooping a lot). Also, he kind of couldn’t put me on medication, because all the medication for Crohn’s was in pill form, and you couldn’t crush it up or take it any way other than swallowing because they’re all time-release stuff that has to get to a certain part of my body before being absorbed. He did give me a trial pack of Asacol/5-ASA that I could try to learn to swallow with, but I was never able to. The next time I saw him after he’d given it to me, I mentioned that I couldn’t swallow them, and he said, “I never gave you that. I wouldn’t have given you that”. Uh, yeaah, you did, who else would have given it to me? He checked his notes and said, “Oh, yeah, I guess I did”.

When I went to see him earlier this year, he said basically I have to grow up and learn to swallow pills. Actually, that’s what he has said every appointment. I remember at one of the first appointments, he said that I’m gonna have to learn to swallow pills, because how am I going to take birth control? Little did he know I was already on birth control: the patch. See? Other medications can be accommodating.

So, he says grow up, and I really don’t know what to do. I know I’m not going to be able to take pills, so at most appointment, I end up saying, okay, prescribe me something, and I’ll go and try to swallow it, knowing full well that I won’t be able to, but also knowing it’s the only way I’m going to be able to end this appointment before I start crying. I think my gastro doc was pretty fed up with me last time, because he left the room while I talked with my dad for a bit, then he came back and said that he could recommend me to another doctor who might be more sympathetic to my feelings. This was the best thing he’s done for me.

Getting an appointment with my new gastroenterologist was a bit messy. She’s only available on certain days, and those days were inevitably when I had classes or exams. Plus, she’s going to be away for a few months soon, so I had to get an appointment with her before she left. I had an appointment a few weeks ago, but she had to reschedule. I finally had an appointment for last Thursday.

About a week before my appointment, I started having symptoms really bad. For a few months, the only symptoms had been going to the bathroom a lot, but then I started getting stomach pains. It’s also summer, so I tend to get a bit depressed and don’t feel like doing or eating anything (which sucks — seasonal depression happens during the winter for normal people!). I wrote myself a computer program hat basically was just a little button on my taskbar that I would press whenever I ate, pooped, threw up, or had stomach pains. After keeping track of this for a few days, I found I was consistently going to the bathroom about six times every morning for two hours after I woke up, and then I would be fine until 4:30 p.m., when I would start having sporadic short stomach pains, which lasted until I went to sleep.

Now, during the week before the appointment, it got even worse. I was having really bad stomach pains, which were lasting into the night and waking me up. I haven’t had the wake-up-and-swear pains since before I had surgery. This is scary. I was also waking up in the middle of the night to go to the bathroom — another pre-surgery symptom. I also had to sleep on my back, because every time I slept on my side, I would get bad pains and nausea. This. Really. Sucked.

So, early Thursday morning, my mom drove me to my appointment. We had to park in a parking garage, which, well, bad start. This means walking in a enclosed, stuffy, smelly place to an elevator, then waiting for the elevator, then finding the doctor’s office in this huge place, then waiting for the doctor. Huuuge anxiety.

After waiting in the waiting room for quite awhile, a woman comes in. She is not my doctor, but I think a nurse. She tells me she’ll be here while my regular doctor is away, so if I have problems, I can see her. She even gives me her card and says I can email her any time I have any problems. She is really nice. I explain my history and recent symptoms, and she writes it all down. She gives me lots of pamphlets and things about Crohn’s and medication. She leaves for awhile and then comes back with my doctor. My doctor is also really nice. They explain the different types of medication for Crohn’s. I don’t really remember all of it, since it was a lot of information. Basically, there’s stuff like 5-ASA, which my old doctor described as aspirin for Crohn’s. Then there are steroids, which are more heavy duty, then biologics, which are injections or infusions every few months. Then there’s surgery, which is kind of a last resort. The nurse said doctors are changing their way of thinking about Crohn’s. I think she said they used to start people on the ASA stuff and then get stronger treatments, but now they’re thinking it might be better to start off with biologics. I could be wrong though. There were a lot of big long generic names that I didn’t recognize.

So my doctor says they’re going to start me on Prednisone. She says I can crush up the pills and take it with food or water, because it doesn’t matter where it is absorbed. I’m not crazy about this, because the last time I took medicine in a drink (liquid iron), well, fruit punch has never been the same. And taking liquid Prozac, squirting it in my mouth from a syringe every morning, it was so gross. But at least something is being done. Plus, she says I’ll only be taking it for a few months. I’m on 40mg for two weeks, then down 5mg every week. This is not an indefinite thing. I’ll be done by the end of summer! I like knowing when I won’t have to take medicine any more.

She also has me get a chest x-ray and get bloodwork done, as well as make sure my vaccinations are up-to-date and have a TB skin test done so that I can be prepared for future treatments. She says Prednisone is not a long term thing. I’m going to take it, and it will put me in remission, but then I need something else afterwards, a maintenance drug to keep me in remission.

My university doctor had said the Pediapred would basically go in like a sledgehammer and knock the Crohn’s out. When I told my old gastro doctor this, he said nothing could do that. But that’s basically what I felt my new doctor was saying about Prednisone. Sigh.

The nurse had my mom and the doctor leave for a few minutes so she could give me a physical. She said my heart was really fast, like 140 BPM, I think? She asked if it was because I was nervous, which I said yes. I always get nervous at doctor’s appointments, but I guess I also just normally (or Crohn’s normally) have a high heart rate. They told me in the hospital I had an irregular heart beat. I don’t know if that’s a permanent thing or it was like that just at the time.

She told me she knew they were giving me a lot of information, but what did I think? I said well, I was told by my surgeons and doctors and everybody that people with Crohn’s can have full, fulfilling, normal lives, and I had decided that yes, this would be me, but before, I didn’t really realize that these people were still taking medicine; I thought that I could do it on my own, without medicine, and that the Crohn’s would just disappear. I realized now that I needed to actually do something about it.

I hated taking my Prozac every morning, back when we were treating depression as the cause and not the symptom. I didn’t want to be a person who has a pill box, a medicine cabinet. I don’t like putting foreign objects in my body, even if they are supposed to be good for me. Now I’m definitely not a modern science and medicine naysayer, but I’d rather not put something in my body if it’s not naturally normally there. I started taking a chewable daily multi-vitamin around when I started getting sick since I was losing so much weight. I also found a chewable vitamin D around the beginning of the school year and started taking that every day as well. I had a nice routine; I’d have breakfast, go to calculus, take my vitamin when I got back home. It wasn’t that bad. I was afraid I wouldn’t remember to take them, which some days I did, but I most of the time, I remembered. Back before I started taking the patch to regulate my periods, I was terrified about having to remember to change this sticker on my butt once a week. But it really wasn’t that bad. I still can’t swallow pills, but I’ve made some progress on my attitude towards medicine.

So, I’m feeling really good about my new doctor. She’s really nice and understanding and something is going to be done.

When my new doctor asked about my colonoscopy I had last year, I said I wasn’t sure about the results. I think my old doctor mentioned that it showed I still had Crohn’s, but that’s all he said about it. Every time I had an appointment with him, he would spend the first ten minutes rereading his notes about my last appointment, but still not seeming to remember anything from before. I think when I had the appointment after the colonoscopy to get my results, he asked me, “Well, why are you here?”, and I had to tell him. My new doctor had the colonoscopy results there, and she said that it showed that I had pretty bad Crohn’s and I had polyps. I don’t entirely understand what those are still, but they are bad. They can turn into cancer.

And my old doctor never told me about this?!?

Let’s be done talking about him now.

So, the appointment was done, and then I had to go running around the hospital to get an x-ray and bloodwork. X-ray was fine, nice and easy. I like x-rays. I’m a little concerned about being exposed to radiation, but I feel like x-rays are actually useful and will tell you something, and they aren’t invasive or involve drinking large amounts of liquid. Speaking of, I am so glad my new doctor hasn’t got me scheduled for a colonoscopy or barium flow or whatever.

Next, is the bloodwork. Unfortunately, I end up waiting a long time, because my gastro doc didn’t specify something on the paper about one of the tests, so the bloodwork doctor (are they called doctors?) had to call my gastro doc, but she was in a meeting. The bloodwork doctor sent me back down to my doctor’s office to get her to clarify, so I was waiting there for awhile. And now it’s like three hours after my appointment started, and I haven’t had anything to eat since breakfast. My mom and I stop in the cafeteria, and I get a chocolate milk (which was really cold and made me realize how not cold the ones at school are). We ask at my doctor’s office if the nurse would know anything about the blood test, but she’s on lunch. Eventually, it all works out, and the nurse goes to bloodwork and clarifies. Then my mom and I go back up to bloodwork.

The doctor doesn’t have too hard a time finding a vein, so everything seems to be going good. But then she takes a really long time taking the blood. “That’s a lot of blood,” I say nervously, and she laughs. I know what’s coming; this has happened to me before. “Sunshine, lollipops, and rainbows…” I sing in my head, but that’s the only part of the song I know. I tell her I’m feeling a bit faint. Then I start closing my eyes, and she tells me to keep them open. Next thing I know, there’s a damp cloth on my head, and my mom is standing next to me.

I hate passing out. The last time I did was at my doctor’s office after getting a needle. I can remember being half-conscious, not being able to see, but hearing everything. It was very calming. This time, I didn’t remember a thing. I was out for a minute, or more, I guess. I don’t know. Long enough for them to find my mom and a cloth and apple juice. I hate going out like that, with time passing and not being aware of it. I think I managed to not swear this time, though. Usually my reaction to being told I passed out is, “Fuck, that sucks, I’m sorry”.

So, we wait around awhile until I can see again. Then we’ve got to go back to the elevators that take a really long time and back in the stuffy parking garage. While my mom and I are standing at the elevators, me with my arm around her neck and her arm around my waist, a man comes up to us and says, “I’m sorry to interrupt, but that would make a great picture”. I smile a little, but I just want to go home and cry and sleep.

We get home and I cry and sleep. Not too exciting. My mom drops off my prescription, my dad will pick it up that night, and I’ll start it on Saturday morning.

Friday morning, I wake up and my dad, who had the morning off, tells me that mom wants me to take the medicine today. She has already crushed up the eight (!) little pills I need to take, I just need to put it in a drink. I was not mentally prepared to do this today.

However, I didn’t get up at all the night before, and I was even able to sleep on my side. I think anxiety about going to see the doctor had a lot of do with the badness of my symptoms the week before.

Here’s the routine: the medicine goes in about half an inch of cranraspberry juice. Then I have another glass with a little bit of untainted cranraspberry juice. Then I have a chocolate milk and two pieces of toast with butter and jam. I stir up the medicine, drink it down, go BLEEEEECH (optional), repeat two more times to make sure I get all of it, then have my toast and milk.

The first day I took it, it took awhile for me to get psyched up to take it. I cried, I swore. My dad and my brother laughed at me, and I laughed (through tears) too, because I knew how ridiculous I looked. But when it was all done, I realized it wasn’t that bad. The next day I took it, my mom said to just take it all in one gulp so I wouldn’t taste it. And she was right; I hardly did. And I suppose that’s exactly how you take a pill. Maybe I will learn how to do it.

Now, during the week, I’ve done it all myself. I don’t even go BLECH any more. I hardly taste it. It’s really easy. I feel a little nauseous after, but it’s just because I’m used to throwing things up. I just need to go and check my FarmVille to take my mind off of it, then I’m good.

So, I have read that Prednisone makes you aggressive and you have mood swings. I don’t think that’s happened to me. Maybe that’s only a long-term side effect. Shorter term, it apparently gives you acne and round cheeks. Not a big deal to me. I don’t go anywhere, and no one sees me. I’ll be off the medicine before I go back to school. I’ve been using face cleansing stuff pretty consistently since I’ve started to hopefully fend off the acne. I read a story about a girl who was taking Prednisone around the time she was getting her high school graduation photos done. That sucks. But I don’t have to worry about that.

I’ve heard a lot of people on Prednisone gain a lot of weight. This is one side effect I love. I weighed 99 pounds last Thursday, and that was with jeans and shoes on, so really I was only about 97 or so. Yesterday, I was 101 pounds. To have a normal BMI for a person my height, it would be 108 to 145 pounds. I would love to be around 120 pounds, which is what I can remember being a long time ago when I was healthy. Really, I would like to be whatever weight will give me a period again. I love not having a period, but I think I’d love even being healthy and warm and cushy even more (as opposed to cold and bony all the time).

I have a crazy good appetite now. Also, I am in love with baloney and mustard sandwiches. I never used to eat mustard on my baloney sandwiches, but I’ve been having it every day for lunch. I had toast for breakfast, a baloney sandwich for lunch, four hot dogs for dinner (which sounds like a lot, but that’s how many hot dogs I’ve always eaten), lots of snacks, and another baloney sandwich after dinner yesterday. I’m even eating chocolate I have leftover from Easter. I got a pack of Maltesers a few weeks ago at the movies and ended up only eating a bit of them. The day after I started taking Prednisone, I looked at the pack and thought, “Hey, those look good”.

I cannot tell you the last time I thought food looked good. I actually have cravings now.

The nurse said my body has been constantly working overtime, trying to fight the Crohn’s; it’s no wonder I didn’t want to eat or do anything. My family and I went for a “hike” a few weekends ago, but it (or should I say, I) only lasted like ten minutes.

Back in 2009, we went to see Judas Priest at Molson Amphitheatre. It was such a long walk from parking to the venue. I threw up in a garbage can afterwards. This Sunday, we went to see Supertramp at Molson Amphitheatre. I didn’t even notice the walk. I felt like a normal person. I had no anxiety. Zero.

Prednisone has been a miracle drug. But, like my doctor said, it is not a long-term solution. It does weird stuff to your bones, weakens them I guess, and puts you at risk for osteoporosis. Hopefully this is only if you take it for a long time. I read a lot of Crohn’s IAmAs on reddit, and everyone who said bad stuff about Prednisone said that they took it for years. I won’t be doing that.

I’m a little worried about tapering off Prednisone, because I’ve heard people having trouble with that, but my doctor seems to have me doing it slowly. I’m also worried about what I will do when I stop taking Prednisone. Infusions and injections are scary and expensive, and I haven’t even looked at side effects of those. But this is all in the future. Right now, I am enjoying being a normal person.

I’ve been working on a lyrics database for one of my websites. The other day, I wrote down a list of things I needed to fix, and that night, I just went boom-boom-boom down the list, getting things done, crossing things out. I have gotten so much accomplished. I just want to do things. I kind of wish I had been like this back when I was still in school! Maybe I would’ve actually cared about doing well on exams.

I’ve heard I should take Prednisone in the morning, not night, because it can interrupt your sleep. It has kept me up a bit. I usually go to bed around 11 or 12 lately, but I wasn’t able to get to sleep until at least 2:00, and then I woke up before 7:00. But I wasn’t really tired during the day. It kind of feels like I what imagine Adderall — or whatever those crazy focus medicines are — to be like.

I took the medicine earlier yesterday and then did yoga before bed, and I managed to get to sleep at a normal time last night, and then I woke up around 9:00 this morning, which is earlier than usual, but more like normal person time.

So, basically, I am doing great now, and I hope it lasts.

Also, the Bruins won the Stanley Cup, and that is a big deal in my house. GOOOOO BRUINS!