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, because this time was really bad. And frustrating, because I was missing classes, which makes me stress out, which makes me even sicker. 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 it 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, and -pred is like Prednisone, 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 a while 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-up, but then by the time 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 I showed my gastro doc what the university doc 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 never put me on any medication because I wasn’t feeling that bad, and he figured the side effects of any medication would 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 he said 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 take to 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 it, 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 at every appointment. I remember at one of the first appointments, he said that I’m gonna have to learn to swallow pills anyway, because how am I going to take birth control? Little did he know I was already on the birth control 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 appointments, 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.
That was the best thing he’s ever 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 on leave for a few months soon, so I had to get an appointment with her before she left. I had an appointment scheduled for a few weeks ago, but she had to reschedule it. I finally had my appointment 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 I 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 that’s basically a button on my taskbar that I could press whenever I ate, pooped, threw up, or had stomach pains. After keeping track of these things 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., and then I would start having sporadic short stomach pains, which lasted until I went to sleep.
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 was a bad start. That meant 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 a while, a woman came in. She was not my doctor; I think she was a nurse. She told me she would be here while my regular doctor is away, so if I have problems, I can see her. She gave me her business card and said I can email her any time I have any problems. She is really nice. I explained my history and recent symptoms, and she wrote it all down. She gave me pamphlets and things about Crohn’s and medication. She left for a while and then came back with my doctor.
My doctor is also really nice. They explained 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 are medications like 5-ASA, which my old doctor described as aspirin for Crohn’s. Then there are steroids, which are more heavy duty. Then there are 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; they used to start people on the ASA stuff and then move on to 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.
My doctor said they were going to start me on Prednisone, a steroid. She says I can crush up the pills and take them with food or water, because it doesn’t matter where in the body the mediciation 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 since. And when I took 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 I decrease the amount by 5mg every week. So 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. My doctor says Prednisone is not a long term thing. I’m going to take it, and it will put me in remission, but then I will need to start taking another maintenance drug afterwars to keep me in remission.
She also wanted me to get a chest x-ray and bloodwork done, make sure my vaccinations were up-to-date, and have a TB skin test done so that I can be prepared for future treatments.
My university doctor 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 that nothing could do that… but that’s basically what 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 rate was really fast, like 140 BPM, I think? She asked if it was because I was nervous, and 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 when I was in the hospital that I had an irregular heartbeat. I don’t know if that’s a permanent thing or it was just temporary.
The nurse 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, normal lives, and I had decided that that’s what my life would be, but before, I didn’t really realize that those people were still taking medicine; I thought that I could do it on my own, without any medicine, and that the Crohn’s would just disappear. I realize now that I need to actually do something about it.
I hated taking Prozac every morning, back when we were thought depression was the cause of my problems and not just a symptom. I didn’t want to be a person who has a pill box or a medicine cabinet. I don’t like the idea of putting foreign objects in my body, even if they are supposed to be good for me. 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 would forget to take them — and some days I did — but most of the time, I did remember. Back before I started taking the birth control patch to regulate my periods, I was terrified about having to remember to change a sticker on my butt once a week, but it really wasn’t that bad. I still can’t swallow pills, but at least I’ve made some progress on my attitude towards medicine, and I’m not as scared of it any more.
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 the colonoscopy I had last year, I said I wasn’t sure of 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 re-reading 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, but they are bad; they can turn into cancer.
…and my old doctor never told me about this?!?
Let’s stop talking about him now.
After the appointment, I had to go running around the hospital to get an x-ray and bloodwork. The 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, and they don’t involve drinking large amounts of liquid. Speaking of, I am so glad my new doctor hasn’t scheduled me for a colonoscopy or barium flow or any of those other fun tests.
Next was the bloodwork. Unfortunately, I ended up waiting a long time, because my gastro doc didn’t specify something in the paperwork about one of the tests, so the bloodwork doctor 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 a while. By now, it’s about three hours after my appointment started, and I haven’t had anything to eat since breakfast. My mom and I went to the cafeteria, and I had a chocolate milk (which was really cold, and it made me realize how not cold the ones at school are). We asked at my doctor’s office if the nurse would know anything about the blood test, but she was on lunch. Eventually, it all worked out, and the nurse went to the bloodwork lab and clarified. Then my mom and I went back up for bloodwork.
The doctor didn’t have too hard a time finding a vein, so everything seemed to be going well. But then she took a really long time taking the blood. “That’s a lot of blood,” I said nervously, and she laughed. I know what’s coming; this has happened to me before. “Sunshine, lollipops, and rainbows…” I sang in my head, but that’s the only part of the song I know. I told her I was feeling a bit faint. Then I started closing my eyes, and she told 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 — long enough for them to find my mom and a cloth and apple juice. I hate going out like that, with time passing and me 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 waited around a while until I could see again. Then we went back to the elevators that take a really long time and back in the stuffy parking garage. While my mom and I were standing at the elevators, me with my arm around her neck and her arm around my waist, a man came up to us and says, “I’m sorry to interrupt, but that would make a great picture.” I smiled a little, but I just wanted to go home and cry and sleep.
We get home, and I cry and sleep. Not too exciting. My mom dropped off my prescription at the pharmacy, 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 needed to take, and 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 severity of my symptoms the week before.
Here’s the routine: the medicine goes in about half an inch of cranraspberry juice. Then, there’s another glass with a little bit of untainted cranraspberry juice, a cup of 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 the medicine, it took a while 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’re supposed to 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 afterwards, 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, and then I’m good.
I have read that Prednisone makes you aggressive and gives you mood swings. I don’t think that’s happened to me, so maybe that’s only a long-term side effect. Shorter term, it apparently gives you acne and round cheeks, which is 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 taking the medication in order 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 that people on Prednisone can gain a lot of weight. This is one side effect I’m looking forward to. 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 even more, I think I’d love being healthy and warm and cushy (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 may sound like a lot, but that’s how many hot dogs I’ve always eaten; they aren’t very big), 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 at the time, I 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 about ten minutes.
Back in 2009, we went to see Judas Priest at Molson Amphitheatre. It was such a long walk from the parking lot to the venue. I threw up in a garbage can after the concert. 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 11pm or 12pm lately, but I wasn’t able to get to sleep until at least 2am, and then I woke up before 7am. But I wasn’t really tired during the day. It kind of feels like I what imagine Adderall — or whatever those 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 9am 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!