I've Got a Gut Feeling
Saturday April 23, 2005
It’s 4:30 in the morning and as I’m laying here in bed staring down the alarm clock, I decided that I feel inspired to write down my whole big ordeal. Some of you may be thinking, “Big ordeal - what is going on with Kim that she is up at 4:30 and writing about it?” Others of you may be thinking that it’s about time you figured out where I have been. So here you go. I’ll warn you, it’s a long story. It isn’t meant to be a woe is me tale, but when you have to field so many questions by so many people about what exactly is going on, you just want to get the whole story out there. If you have no clue what I am talking about, the short of it is I am on medical leave from school because I have been diagnosed with Crohn’s disease. If you are interested to know the whole story, then sit back my friends and enjoy. Take a break from those program notes or read this while you wait for an interesting update in Jill’s live journal.
I will offer a little caveat. It’s a little personal and even blush worthy at times. For those of you who know me you know I am a pretty modest person (cut to mental image of me in my shorts over my bathing suit). But after you’ve had an in-depth tour of your innards and a handful of people’s hands explore your rear, you don’t have such a hard time opening up (haha - no pun intended). Now I would say skip over the gross parts, but that’s like telling an English class to just skip over the nastiness in I Know Why the Caged Bird Sings. So enough of this intro, let’s get started.
I’ll go back to second semester. It’s a while back, but this wasn’t something that just hit me over the head Easter weekend. I wouldn’t go as far to say that I have been suffering for the last semester, but my health has started to go down hill. As far back as Thanksgiving break my family has remarked on my sickly appearance when I lost ten pounds. I wasn’t much healthier at Christmas. Perhaps you remember a little ditty called “I Feel Shitty” and my crazy high temps of 105 degrees. Well things weren’t much better after Christmas break either. My diet had really dwindled down to wheat thins, yogurt and cereal. I didn’t even attempt to go to servo for meals any more because I knew that there was nothing there for me that wouldn’t make me sick.
I had become extremely fatigued, which I now know is because I am anemic. Now I know what you are thinking. “Kim’s always tired. She goes to bed at 9:00 every night.” But I had really been exhausted. Many a night did Lisa attempt to wake me around 6:30 pm to finish my homework as I lay passed out in a sea of masterlisting or Italian. Friday afternoons I would go to bed at 3:00 pm and sleep through the next day.
I didn’t think anything was seriously wrong with me. Everyone knows that I get mono every spring or some other phantom fatigue syndrome. And I was taking vitamins for the first time in my life so the fact that I hadn’t seen chicken for months wasn’t worrying me a whole deal. But my fatigue wasn’t the only thing. Here comes the fun stuff. I’m sure I will exhaust my vocabulary for human waste by the end of this. I was having a lot of trouble going to the bathroom. If you have been on a music trip with me you know I have bathroom issues to begin with. I was having really bad constipation and rectal bleeding from anal fissures. I also hadn’t had my period since January (and yes Peaches, I am 100% sure I am not pregnant). I was living in this less than healthy state for quite a while, and about two weeks before spring break my life only got more hectic. Someone put a hit out on my dad. Just Kidding! But, it turns out that what my dad’s doctors had been treating as acid reflux disease since last summer was actually a heart with all of his arteries 95-100% clogged. They didn’t know how he had lived the past 6 months. It turns out he had probably suffered 4-5 heart attacks since last August, one of which while driving me to Gettysburg. While he went in for a stress test he had a heart attack and ended up in ICU with a catheter pumping his heart for a week before they could get him stable enough to perform a five way bypass and ventricular surgery.
As if life as a music ed student isn’t stressful enough, I was having a pretty hard time dealing with all of this. The whole week before spring break I was a ball of stress on the verge of tears. I was throwing up at least one meal a day and wasn’t having any bowel movements. I blamed all of this on stress and thought once I got home from tour and got some KFC I would clean myself out and be fine. All I had to do was make it through one more week. So my fellow New Hampshirite and JC Penney lover Emily took me grocery shopping for tour and I got myself together for Ohio.
Friday afternoon I boarded the bus with my lunchable and frozen grapes and was determined to finish the whole thing. It took me 2 hours. I got a kid’s meal at Wendy’s on the way to Jim’s church and felt like I had eaten a horse after getting that down. But I figured I had barely eaten all week and hadn’t been to the bathroom so my horrible stomach ache was just a result of that. That night I started popping gas-ex and Fibercon and continued to do so at every meal to try and stop my horrible stomach and chest pains and nausea. I barely ate anything over the course of that week, not that church pot luck dinners have much else besides a roll I would eat anyway. The horrible pains continued after every meal I got down. I was curled up in a ball on the bus and every concert I felt about ready to pass out on Nick as I counted down the songs to Camerata so I could sit for a few minutes. I could barely sing half of the time and tried desperately to keep from grimacing in response to Nick’s incessant elbowing to get me to smile.
I was having a horrible time sleeping at night. Lord knows what I put poor Leah and Katie through as bedmates. By the time we made it to the hotel at the end of the week I finally had a bowel movement, but I didn’t relieve any pain. The last night in Ohio after eating a chicken breast at the brewery I had all I could do to jump off the elevator and get to the bathroom in time to projectile vomit everything. The last day of tour I was curled up with my pillow on the bus trying to self medicate with Dramamine to sleep off some of the crappiness I was feeling.
The next day I was more than ready to go home. At the airport I got down a couple bites of the grossest pizza ever next to servo and stole a couple of Catie’s fries. I listened to some good ole James Taylor on the flight back as I dreamt about the toilet that awaited me at home. Mike picked me up at the airport and remarked on my weight loss - he said I looked like the kid on the cover of his diet book that has Crohn’s disease. If only he knew…
To my mother’s disbelief I passed up KFC for dinner and just had a piece of bread. That’s when she knew something was seriously wrong . I had all I could do to visit my dad in the hospital that night. When I got home I went into labor for an hour to deliver the most petite stool ever. The next day I had to go the doctor’s to get this disgusting rash checked out that I got from the lovely barracks of Rice Hall’s bathroom. I didn’t say anything about the pain because I thought I was still constipated.
Later that night the same thing happened all over again. This time I had a horrible fever on top of it. My mom refused to let me go back to school unless I got a clean bill of health, so Saturday morning off we went to the ER. I told them everything. The pain, the fever, the vomiting, the fatigue, the rectal bleeding, the mouth ulcers (oh yeah I almost forgot about those). Well, I’m pretty sure the two ER nurses thought I was bulimic. The nurse kept looking at this cut on my hand by my middle finger (Gladys dropped my 50 pound suitcase on my hand - what a radish) and saying “So how many meals a day are you vomiting?”
In the end my ER visit led me down a path leading to nowhere. My blood work came back saying I was anemic, dehydrated and malnutritioned. Shocker. The doctor blamed this on my less than favorable diet. All my other strife? Constipation. They said that my x-rays showed that my intestines were backed up with stool right to my stomach. So I got some prescription laxatives and an enema and was sent home. I just needed a “good cleaning out” and the doctor suggested I transfer to a school that can better suit my eating issues.
For the next five days I stayed at home while everyone returned from spring break. I planned on returning back to school that Saturday, but that obviously didn’t happen. I barely ate all that week and when I did I was wrenched in excruciating pain for the next six hours trying to digest the food. Going to the bathroom was a nightmare. I was taking the laxatives religiously but the problem was, there was nothing in me to clean out - I wasn’t constipated. The laxatives were just sloughing away at my intestines. The doctors were sure I had a complete blockage and that an enema would do the trick. It did absolutely nothing and I just passed it right back out with no sign of stool.
My pain and fevers were only getting worse. Every time I ate I would spend hours belching like you have never heard in you life - even big for me. Christina’s boyfriend could hear them through the phone in the next room over. My mom had to have large bowls in every room in the house for vomiting. My nights were horrible. I woke up every night in a pool of sweat and a 103 degree fever. That Friday I got dressed for the first time in a week and went to go see the directors before I went back to college. I put on a pretty good show and almost looked healthy with the ten pounds of makeup I had on. I was almost feeling ok. I thought if I could get myself together I would be fine to go back to school the next day. I changed my mind that night. Much to my family’s relief I decided I couldn’t imagine going back to school feeling the way I did. So the next day my mom dragged me in my pj’s to the doctor’s to see what the problem was. I certainly couldn’t be constipated any more. So we told the whole list of symptoms to the doctor and he decided I should go for some ultrasounds and blood work to see if something was wrong with any of my organs. Also- I think he thought I was pregnant. You tell a doctor you haven’t had your period in three months and they start to wonder. Needless to say, I wasn’t pregnant. The ultrasounds were a big ordeal. The first one for my abdomen was fine, but the pelvic one was another story. You have to drink 36 ounces of fluid in 10 minutes an hour before the test so your bladder will be fully expanded and they can see your other organs. So I drank the liquid and waited, hopped on the table and got all KY jellied up, and the nurse started getting all agitated looking at the screen. “Did you go to the bathroom? Are you sure? Did you drink the liquid?” I was so dehydrated that my body sucked up every ounce of that water. So I had to drink another 36 ounces and at that my point my bladder was still only about half full, but they still did the ultrasound. Everything on the first ultrasound came back clear, but the second one showed evidence of fluid in my stomach cavity from a burst ovarian cyst. Time to go to the OB-GYN. So the next day I head on down and tell my gynecologist everything about the past months as she wrote down all the details. I didn’t see what mouth ulcers and my eating disability had to do with ovarian cysts, but, what the hey- she seemed interested.
By the end of my story she said that ovarian cysts had to be the least of my problems. Granted they suck - but not this bad. After looking over the report from my ultrasound she found out that the technician never took a picture of my appendix (idiot), so the doctor thought that maybe I had appendicitis. I still had to have a pap smear, get tested for STD’s and take a pregnancy test. When I was checking out she peeked outside into the waiting and said, “I know you’re going to be shocked, but the test came back negative .” She sent me for some blood work and a CAT scan the next day. Boy are those fun. First you drink the “cool aid” barium and sit for an hour in the waiting room. Then you strip down into one of those sexy johnnies and lay out on the table for a barium enema up to your eyeballs. Lastly they give you the contrast dye via IV which makes you feel all warm and tingly - and like you just wet your pants. I had an allergic reaction to the dye. That was fun - sneezing, itching, hives …woo hoo.
After running to the bathroom to expel the gallon of barium that just got shot up my rear, and then waiting for the results for an hour, I was told my gynecologist wanted to see me right away. Lovely.
So we head back on up to see the doctor and she takes my mom and me into this little conference room and sits us down. The good news - my appendix was fine. The not so good news - the CAT scan came back Crohn’s disease positive. I started laughing right there. So did my mom. “I don’t think you understand how serious this is, Kim.” I got it, but I couldn’t stop laughing. My mom and brother had been saying I had Crohn’s since Thanksgiving, and she had spent the past two weeks trying to get me to a gastroenterologist. But no, I was constipated. Or pregnant (funny every time). And then the ovarian cysts. And now I’m sitting in the gynecologist’s office being told I had Crohn’s. It was a relief to know what was wrong with me. Everything added up to Crohn’s. It was just pitiful that it took all those tests and mistreatments to get there. The doctor even said that the majority of the foods I have never been able to eat are consistent with foods that are dangerous to a person with Crohn’s disease and that all these years my eating disability was in part a result of my body rejecting the food because of the Crohn’s.
They didn’t want to label me Crohn’s yet. I would have to see a gastroenterologist (finally) and have a colonoscopy and some other tests. So the next day we went to go see Dr. Rubin who put me to shame with my lack of knowledge about Gettysburg. He set me up for a colonoscopy that Tuesday and an Upper GI series with small bowel follow through for that Wednesday. He also emptied my eight little bottles worth of blood that looked like airplane alcohol viles to send to Massachusetts to test for parasites and bacteria.
I was so relieved. I finally knew what was wrong with me. I could finally tell Lisa something besides “my stomach hurts.” God knows what my teachers thought at this point. The emails they got from academic advising were also sent to me and said “Kim’s mom called and said she has abdominal pain and fevers and will not be returning to school.” I understand they were keeping my privacy, but that is a pitiful explanation for two weeks absence from school.
If you are still reading this, props. I know its long but it is now 6:00 in the morning and I have nothing better to do with my time right now. I’m sure you do, so take a break. I’m just getting started. Come back later when you are ready for more and eat a bowl of popcorn for me. Ahh popcorn, that sounds good.
On my way home from the gastroenterologist my mom took me to Burger King. I was starving because I had been fasting all week for my tests and blood work. I had five chicken tenders, a large fry, and a medium chocolate shake. Man was that good. If only I knew I was that I’d go through hell that night trying to digest it. And then it came. The most foul fecal matter I’ve ever seen in my life. It was like someone threw up frothy oatmeal and, here’s the kicker, the toilet was full of blood. I’m not talking like a little on the toilet paper. It was horrifying. I cried myself through a night of horror only to wake to the sound of my mom on the phone with the doctor’s office. She was told to get me to the ER and have me admitted and the doctor would meet us there. I was livid. I had spent the last two weeks in the doctors’ offices and all I wanted to do was stay home for the weekend. I wasn’t showered, I hadn’t shaved and I was still in my pj’s. In the ER I just sat on the verge of tears and told my mom she would have to do the talking. I couldn’t explain it one more time - it was the same EMT from 2 weeks ago when I was “constipated” and the last thing I wanted to do was sit and rate my pain on a scale of one to ten. The EMT brought me into the only room with a TV. He said I would probably be there for a while. Oh joy.
In came the lab technicians to drain me of blood for a cache of tests. I had to be checked for all kinds of bacteria and infection that could have been harvesting in my intestines. They knocked me up with some pain medication to put me out of my misery until the doctor arrived. About an hour later they woke me up. I was hooked up to an IV delivering intravenous antibiotics, fluids, and a blood transfusion. I had lost a lot of blood and was dangerously anemic. The doctor was absolutely appalled at my CAT scan. He couldn’t believe the doctor had sent me home for the weekend with no antibiotics and was going to put off the colonoscopy until Tuesday. I was rampant with infection, inflammation, and pain. He said the CAT scan showed that my small intestine was almost completely swollen shut. There were air bubbles all on the outside wall of the intestines where blood and toxic infection were just leaking out into my stomach cavity. He was putting a rush on my colonoscopy and standby for emergency surgery.
That night I had to start preparing for the test. I don’t think I could ever do that again. The phosphate soda you have to drink is the most putrid stuff I’ve ever had in my life. After my first attempt I immediately threw it up. The doctor insisted I was supposed to have three doses of it to “clean me out” so I would be clear for the colonoscopy. Seriously, there was nothing left to me. I don’t know why he thought there was. He ordered anti-nausea medicine and told me to try again. This time the nurse tried mixing it with apple juice and ice chips. It was the slushy of death. She wanted me to swig back my pills with it, but I yelled at her (ok it’s me we are talking about, I begged and pleaded) for a cup of water to take the pills with or else I knew I would throw up. She assured me the anti-nausea medicine would make me keep it down when all it did was make me drowsy and umm…nauseous! I fell asleep mid slushy and she woke me up with a fresh cup. The doctor said I had to get more down because I had yet to go to the bathroom. Hello, that’s because I didn’t have to go. I tried to drink one last dose. It was cut time and I wasn’t supposed to have anything after midnight. I told the nurse to carry me to the bathroom and I would do something so she would have to leave me alone. I passed some foggy liquid and called her in. As I was standing there clinging to my IV pole ready to pass out from all the physical exertion and nausea I managed to grab my barf bag and expelled whatever foam my stomach acid managed to work up. I held out the bag for the nurse. So much for keeping that down.
I popped a sleeping pill and headed to bed. I was completely drained. Six o-clock am wake up call to my doctor, surgeon (just in case my intestines burst or needed to be removed) and more blood work. They couldn’t believe I hadn’t been running to the bathroom all night and gave me an enema to give it one last shot. Oh, the enema. They should use those at frat parties and see how long the guys can hold it. I went fifteen minutes - twenty if you count the five it took to drag my body and IV pole across the room into the bathroom.
The nurse told me to keep my underwear off for the colonoscopy, but I knew the surgeon was coming back to check me out before I went in. There was no way he was going to flip up the blankets with me in no underwear, so I snuck it back on. I wish I could have seen the look on the doctor’s face when they lifted up my Johnny as I lay passed out on the table and they realized they had to take off my underwear.
I woke up about five hours after in the hospital bed. I was on my third bag of blood transfusions. I wouldn’t get to talk with the doctor until he made his rounds the next morning, but my mom showed me the pictures from the colonoscopy. Disgusting. My colon was ridden with ulcers, puss, and blood. The entrance to my small intestine was so swollen that they couldn’t even fit the scope in. I was supposed to be on complete bowel rest. The only thing I was allowed to have was ice chips, and if they melted the nurses took them away. I had some visitors that afternoon, popped another sleeping pill and was out for the night. The next morning at 7:00 am I was wheeled down to x-ray for my upper GI series. They sat me in the hallway with two cups of barium and said to drink it as fast as I could. Hah, that’s funny. Two days of nothing but ice chips and now I’m supposed to chug down two cups of what might as well be cement. I got it down in about half an hour. I was proud. They said it would take about 45 minutes to pass through the small intestine. Every half hour I had to crawl onto my stomach on the x-ray table to check and see if it had gone through. Four hours later it had passed through the small intestine. As if hopping up and down off the table and drinking barium wasn’t painful enough, for the GI series the doctor took a paddle with a ball on it and pressed it around my stomach to move my small intestine around. “Let me know if this hurts, but it shouldn’t. It’s like a balloon on your stomach.” #@!$* Some balloon. Might as well have been pelting me with wrenches like in Dodgeball.
Hopefully that was the last x-ray I will have to take for a while. I got more x-rays taken in those three weeks than most people in a lifetime. Holy mother of radiation. Five hours later I returned to my room. Time to meet with the doctor. “It’s official. You have Crohn’s disease and at the moment also have ulcerative colitis.” No shit, Sherlock. The doctors prescribed antibiotics and antiparasitic drugs that had to be given intravenously for maximum effect. To add to this, my body was so overridden by infection that it had become terribly inflamed. To combat this, I was prescribed two heavy-duty, highly toxic steroid medications, hydrocortisone and prednisone.
Crohn’s disease is a much worse diagnosis than I had imagined. It is a condition primarily involving the small bowel and the area where it joins the colon that causes the intestinal wall to thicken and cause narrowing of the bowel channel, blocking the intestinal tract. The result is abnormal membrane function, including nutrient malabsorption. Crohn’s disease is incurable. Patients with Crohn’s disease experience frequent and progressive symptoms of abdominal pain, diarrhea, and extreme weight loss as seen in other wasting conditions such as cancer and AIDS. Many patients experience premature death. How’s that for making you feel hopeful about your diagnosis! At the moment it looks like I will be on medication for the rest of my life. Yet, the side effects of the medications are almost as bad as the disease itself.
I stayed in the hospital for six days. I was living off of Ensure, Italian ice, and ice chips with apple juice. I was feeling pretty decent. I wasn’t eating so I wasn’t in pain, and all the blood transfusions and medicine had helped me gain back some strength. Granted I smelled rank and was puffed up like a balloon. I gained 10 pounds from the IV liquid. That’s how dehydrated I was. But I was almost feeling decent. I was even laughing. Thank you so much to all my family and to Sarah, Robbie, Cynthia, Mike and Andy for visiting me and taking care of me. You made my stay that much more bearable.
I was starting to lose it in the hospital, though. I couldn’t get any sleep. They were checking my vitals every two hours and changing my IV every hour and a half. After a couple of days my right arm had become all bruised and swollen from the IV and it took three nurses and an EMT an hour to get an IV into my left arm. Later that night the meds they gave me turned my veins all red going right up my arm so they had to move it to my right hand which is still bruised. That bled like a mother.
I was starving to death and when I finally got to eat, all the pain and nausea came right back. The food sucked anyway. Andy wouldn’t even eat it - and that says something. Thursday morning the doctor said that they were possibly thinking that maybe I could go home Friday, so when he came back that afternoon I thought something was wrong. The practice is in Somersworth and the docs made their rounds at 6:00am. So he walks in and closes the curtain.
“Are you in pain?”
“No.”
“Are you nauseous?”
“No.”
“Did you have diarrhea?”
“No.”
“Do you want to go home tonight?”
“YES!”
So they called my mom and unhooked the IV. I was out of that bed so fast that by the time she got there to help get everything together I was all dressed and had everything packed. All that activity made me a little green around the gills but I was so excited to get out of that hospital.
I’ve been home from the hospital for nine days now. I’ve been taking 23 pills a day around the clock. The side effects are horrible, and after eating for a few days all the pain has come back. I can’t go anywhere because my immune system is so completely shot. One of my meds is to shut down my immune system to keep my body from rejecting the new blood and my intestines. I’m on tons of steroids which will more than likely add up to some marked weight gain. I’m an insomniac! You’ve seen me on the internet way past my bedtime. And when I do sleep it’s all nightmares. One night I dreamt of five different scenarios for the apocalypse, one of which involved me giving birth to the antichrist. The next night I dreamt that they let me go back to school to pack my stuff and Dr. Gratto locked me in a room and gave me three hours to do my make-up work. I’m losing my hair by the fistfuls. Even my eyebrows are starting to fall out.
My intestines are still so bad that they can’t very well assimilate the nutrients in the food I eat so I am still suffering from malabsorption and anemia. My stools just leak blood into the toilet from all the internal bleeding. I’m on a diet with no fruit, juice, vegetables, wheat, fiber, and very little dairy. Not that I ate most of that to begin with because of my eating disability (it all makes sense now doesn’t it).
The steroids make me starving out of my mind, but my intestines can’t handle any substantial amount of food. So, yes I’m out of the hospital, but still very sick. I’m back at the doctor’s on Monday and perhaps I can come back to Gburg at the end of next week to say goodbye, pack up, and see if I can salvage anything academic wise. I miss everyone. I hope you didn’t forget about me. If you read this, thanks for indulging me and my story. Hopefully it made you laugh a little. I hope to see you all soon.
Kimberley
It’s 4:30 in the morning and as I’m laying here in bed staring down the alarm clock, I decided that I feel inspired to write down my whole big ordeal. Some of you may be thinking, “Big ordeal - what is going on with Kim that she is up at 4:30 and writing about it?” Others of you may be thinking that it’s about time you figured out where I have been. So here you go. I’ll warn you, it’s a long story. It isn’t meant to be a woe is me tale, but when you have to field so many questions by so many people about what exactly is going on, you just want to get the whole story out there. If you have no clue what I am talking about, the short of it is I am on medical leave from school because I have been diagnosed with Crohn’s disease. If you are interested to know the whole story, then sit back my friends and enjoy. Take a break from those program notes or read this while you wait for an interesting update in Jill’s live journal.
I will offer a little caveat. It’s a little personal and even blush worthy at times. For those of you who know me you know I am a pretty modest person (cut to mental image of me in my shorts over my bathing suit). But after you’ve had an in-depth tour of your innards and a handful of people’s hands explore your rear, you don’t have such a hard time opening up (haha - no pun intended). Now I would say skip over the gross parts, but that’s like telling an English class to just skip over the nastiness in I Know Why the Caged Bird Sings. So enough of this intro, let’s get started.
I’ll go back to second semester. It’s a while back, but this wasn’t something that just hit me over the head Easter weekend. I wouldn’t go as far to say that I have been suffering for the last semester, but my health has started to go down hill. As far back as Thanksgiving break my family has remarked on my sickly appearance when I lost ten pounds. I wasn’t much healthier at Christmas. Perhaps you remember a little ditty called “I Feel Shitty” and my crazy high temps of 105 degrees. Well things weren’t much better after Christmas break either. My diet had really dwindled down to wheat thins, yogurt and cereal. I didn’t even attempt to go to servo for meals any more because I knew that there was nothing there for me that wouldn’t make me sick.
I had become extremely fatigued, which I now know is because I am anemic. Now I know what you are thinking. “Kim’s always tired. She goes to bed at 9:00 every night.” But I had really been exhausted. Many a night did Lisa attempt to wake me around 6:30 pm to finish my homework as I lay passed out in a sea of masterlisting or Italian. Friday afternoons I would go to bed at 3:00 pm and sleep through the next day.
I didn’t think anything was seriously wrong with me. Everyone knows that I get mono every spring or some other phantom fatigue syndrome. And I was taking vitamins for the first time in my life so the fact that I hadn’t seen chicken for months wasn’t worrying me a whole deal. But my fatigue wasn’t the only thing. Here comes the fun stuff. I’m sure I will exhaust my vocabulary for human waste by the end of this. I was having a lot of trouble going to the bathroom. If you have been on a music trip with me you know I have bathroom issues to begin with. I was having really bad constipation and rectal bleeding from anal fissures. I also hadn’t had my period since January (and yes Peaches, I am 100% sure I am not pregnant). I was living in this less than healthy state for quite a while, and about two weeks before spring break my life only got more hectic. Someone put a hit out on my dad. Just Kidding! But, it turns out that what my dad’s doctors had been treating as acid reflux disease since last summer was actually a heart with all of his arteries 95-100% clogged. They didn’t know how he had lived the past 6 months. It turns out he had probably suffered 4-5 heart attacks since last August, one of which while driving me to Gettysburg. While he went in for a stress test he had a heart attack and ended up in ICU with a catheter pumping his heart for a week before they could get him stable enough to perform a five way bypass and ventricular surgery.
As if life as a music ed student isn’t stressful enough, I was having a pretty hard time dealing with all of this. The whole week before spring break I was a ball of stress on the verge of tears. I was throwing up at least one meal a day and wasn’t having any bowel movements. I blamed all of this on stress and thought once I got home from tour and got some KFC I would clean myself out and be fine. All I had to do was make it through one more week. So my fellow New Hampshirite and JC Penney lover Emily took me grocery shopping for tour and I got myself together for Ohio.
Friday afternoon I boarded the bus with my lunchable and frozen grapes and was determined to finish the whole thing. It took me 2 hours. I got a kid’s meal at Wendy’s on the way to Jim’s church and felt like I had eaten a horse after getting that down. But I figured I had barely eaten all week and hadn’t been to the bathroom so my horrible stomach ache was just a result of that. That night I started popping gas-ex and Fibercon and continued to do so at every meal to try and stop my horrible stomach and chest pains and nausea. I barely ate anything over the course of that week, not that church pot luck dinners have much else besides a roll I would eat anyway. The horrible pains continued after every meal I got down. I was curled up in a ball on the bus and every concert I felt about ready to pass out on Nick as I counted down the songs to Camerata so I could sit for a few minutes. I could barely sing half of the time and tried desperately to keep from grimacing in response to Nick’s incessant elbowing to get me to smile.
I was having a horrible time sleeping at night. Lord knows what I put poor Leah and Katie through as bedmates. By the time we made it to the hotel at the end of the week I finally had a bowel movement, but I didn’t relieve any pain. The last night in Ohio after eating a chicken breast at the brewery I had all I could do to jump off the elevator and get to the bathroom in time to projectile vomit everything. The last day of tour I was curled up with my pillow on the bus trying to self medicate with Dramamine to sleep off some of the crappiness I was feeling.
The next day I was more than ready to go home. At the airport I got down a couple bites of the grossest pizza ever next to servo and stole a couple of Catie’s fries. I listened to some good ole James Taylor on the flight back as I dreamt about the toilet that awaited me at home. Mike picked me up at the airport and remarked on my weight loss - he said I looked like the kid on the cover of his diet book that has Crohn’s disease. If only he knew…
To my mother’s disbelief I passed up KFC for dinner and just had a piece of bread. That’s when she knew something was seriously wrong . I had all I could do to visit my dad in the hospital that night. When I got home I went into labor for an hour to deliver the most petite stool ever. The next day I had to go the doctor’s to get this disgusting rash checked out that I got from the lovely barracks of Rice Hall’s bathroom. I didn’t say anything about the pain because I thought I was still constipated.
Later that night the same thing happened all over again. This time I had a horrible fever on top of it. My mom refused to let me go back to school unless I got a clean bill of health, so Saturday morning off we went to the ER. I told them everything. The pain, the fever, the vomiting, the fatigue, the rectal bleeding, the mouth ulcers (oh yeah I almost forgot about those). Well, I’m pretty sure the two ER nurses thought I was bulimic. The nurse kept looking at this cut on my hand by my middle finger (Gladys dropped my 50 pound suitcase on my hand - what a radish) and saying “So how many meals a day are you vomiting?”
In the end my ER visit led me down a path leading to nowhere. My blood work came back saying I was anemic, dehydrated and malnutritioned. Shocker. The doctor blamed this on my less than favorable diet. All my other strife? Constipation. They said that my x-rays showed that my intestines were backed up with stool right to my stomach. So I got some prescription laxatives and an enema and was sent home. I just needed a “good cleaning out” and the doctor suggested I transfer to a school that can better suit my eating issues.
For the next five days I stayed at home while everyone returned from spring break. I planned on returning back to school that Saturday, but that obviously didn’t happen. I barely ate all that week and when I did I was wrenched in excruciating pain for the next six hours trying to digest the food. Going to the bathroom was a nightmare. I was taking the laxatives religiously but the problem was, there was nothing in me to clean out - I wasn’t constipated. The laxatives were just sloughing away at my intestines. The doctors were sure I had a complete blockage and that an enema would do the trick. It did absolutely nothing and I just passed it right back out with no sign of stool.
My pain and fevers were only getting worse. Every time I ate I would spend hours belching like you have never heard in you life - even big for me. Christina’s boyfriend could hear them through the phone in the next room over. My mom had to have large bowls in every room in the house for vomiting. My nights were horrible. I woke up every night in a pool of sweat and a 103 degree fever. That Friday I got dressed for the first time in a week and went to go see the directors before I went back to college. I put on a pretty good show and almost looked healthy with the ten pounds of makeup I had on. I was almost feeling ok. I thought if I could get myself together I would be fine to go back to school the next day. I changed my mind that night. Much to my family’s relief I decided I couldn’t imagine going back to school feeling the way I did. So the next day my mom dragged me in my pj’s to the doctor’s to see what the problem was. I certainly couldn’t be constipated any more. So we told the whole list of symptoms to the doctor and he decided I should go for some ultrasounds and blood work to see if something was wrong with any of my organs. Also- I think he thought I was pregnant. You tell a doctor you haven’t had your period in three months and they start to wonder. Needless to say, I wasn’t pregnant. The ultrasounds were a big ordeal. The first one for my abdomen was fine, but the pelvic one was another story. You have to drink 36 ounces of fluid in 10 minutes an hour before the test so your bladder will be fully expanded and they can see your other organs. So I drank the liquid and waited, hopped on the table and got all KY jellied up, and the nurse started getting all agitated looking at the screen. “Did you go to the bathroom? Are you sure? Did you drink the liquid?” I was so dehydrated that my body sucked up every ounce of that water. So I had to drink another 36 ounces and at that my point my bladder was still only about half full, but they still did the ultrasound. Everything on the first ultrasound came back clear, but the second one showed evidence of fluid in my stomach cavity from a burst ovarian cyst. Time to go to the OB-GYN. So the next day I head on down and tell my gynecologist everything about the past months as she wrote down all the details. I didn’t see what mouth ulcers and my eating disability had to do with ovarian cysts, but, what the hey- she seemed interested.
By the end of my story she said that ovarian cysts had to be the least of my problems. Granted they suck - but not this bad. After looking over the report from my ultrasound she found out that the technician never took a picture of my appendix (idiot), so the doctor thought that maybe I had appendicitis. I still had to have a pap smear, get tested for STD’s and take a pregnancy test. When I was checking out she peeked outside into the waiting and said, “I know you’re going to be shocked, but the test came back negative .” She sent me for some blood work and a CAT scan the next day. Boy are those fun. First you drink the “cool aid” barium and sit for an hour in the waiting room. Then you strip down into one of those sexy johnnies and lay out on the table for a barium enema up to your eyeballs. Lastly they give you the contrast dye via IV which makes you feel all warm and tingly - and like you just wet your pants. I had an allergic reaction to the dye. That was fun - sneezing, itching, hives …woo hoo.
After running to the bathroom to expel the gallon of barium that just got shot up my rear, and then waiting for the results for an hour, I was told my gynecologist wanted to see me right away. Lovely.
So we head back on up to see the doctor and she takes my mom and me into this little conference room and sits us down. The good news - my appendix was fine. The not so good news - the CAT scan came back Crohn’s disease positive. I started laughing right there. So did my mom. “I don’t think you understand how serious this is, Kim.” I got it, but I couldn’t stop laughing. My mom and brother had been saying I had Crohn’s since Thanksgiving, and she had spent the past two weeks trying to get me to a gastroenterologist. But no, I was constipated. Or pregnant (funny every time). And then the ovarian cysts. And now I’m sitting in the gynecologist’s office being told I had Crohn’s. It was a relief to know what was wrong with me. Everything added up to Crohn’s. It was just pitiful that it took all those tests and mistreatments to get there. The doctor even said that the majority of the foods I have never been able to eat are consistent with foods that are dangerous to a person with Crohn’s disease and that all these years my eating disability was in part a result of my body rejecting the food because of the Crohn’s.
They didn’t want to label me Crohn’s yet. I would have to see a gastroenterologist (finally) and have a colonoscopy and some other tests. So the next day we went to go see Dr. Rubin who put me to shame with my lack of knowledge about Gettysburg. He set me up for a colonoscopy that Tuesday and an Upper GI series with small bowel follow through for that Wednesday. He also emptied my eight little bottles worth of blood that looked like airplane alcohol viles to send to Massachusetts to test for parasites and bacteria.
I was so relieved. I finally knew what was wrong with me. I could finally tell Lisa something besides “my stomach hurts.” God knows what my teachers thought at this point. The emails they got from academic advising were also sent to me and said “Kim’s mom called and said she has abdominal pain and fevers and will not be returning to school.” I understand they were keeping my privacy, but that is a pitiful explanation for two weeks absence from school.
If you are still reading this, props. I know its long but it is now 6:00 in the morning and I have nothing better to do with my time right now. I’m sure you do, so take a break. I’m just getting started. Come back later when you are ready for more and eat a bowl of popcorn for me. Ahh popcorn, that sounds good.
On my way home from the gastroenterologist my mom took me to Burger King. I was starving because I had been fasting all week for my tests and blood work. I had five chicken tenders, a large fry, and a medium chocolate shake. Man was that good. If only I knew I was that I’d go through hell that night trying to digest it. And then it came. The most foul fecal matter I’ve ever seen in my life. It was like someone threw up frothy oatmeal and, here’s the kicker, the toilet was full of blood. I’m not talking like a little on the toilet paper. It was horrifying. I cried myself through a night of horror only to wake to the sound of my mom on the phone with the doctor’s office. She was told to get me to the ER and have me admitted and the doctor would meet us there. I was livid. I had spent the last two weeks in the doctors’ offices and all I wanted to do was stay home for the weekend. I wasn’t showered, I hadn’t shaved and I was still in my pj’s. In the ER I just sat on the verge of tears and told my mom she would have to do the talking. I couldn’t explain it one more time - it was the same EMT from 2 weeks ago when I was “constipated” and the last thing I wanted to do was sit and rate my pain on a scale of one to ten. The EMT brought me into the only room with a TV. He said I would probably be there for a while. Oh joy.
In came the lab technicians to drain me of blood for a cache of tests. I had to be checked for all kinds of bacteria and infection that could have been harvesting in my intestines. They knocked me up with some pain medication to put me out of my misery until the doctor arrived. About an hour later they woke me up. I was hooked up to an IV delivering intravenous antibiotics, fluids, and a blood transfusion. I had lost a lot of blood and was dangerously anemic. The doctor was absolutely appalled at my CAT scan. He couldn’t believe the doctor had sent me home for the weekend with no antibiotics and was going to put off the colonoscopy until Tuesday. I was rampant with infection, inflammation, and pain. He said the CAT scan showed that my small intestine was almost completely swollen shut. There were air bubbles all on the outside wall of the intestines where blood and toxic infection were just leaking out into my stomach cavity. He was putting a rush on my colonoscopy and standby for emergency surgery.
That night I had to start preparing for the test. I don’t think I could ever do that again. The phosphate soda you have to drink is the most putrid stuff I’ve ever had in my life. After my first attempt I immediately threw it up. The doctor insisted I was supposed to have three doses of it to “clean me out” so I would be clear for the colonoscopy. Seriously, there was nothing left to me. I don’t know why he thought there was. He ordered anti-nausea medicine and told me to try again. This time the nurse tried mixing it with apple juice and ice chips. It was the slushy of death. She wanted me to swig back my pills with it, but I yelled at her (ok it’s me we are talking about, I begged and pleaded) for a cup of water to take the pills with or else I knew I would throw up. She assured me the anti-nausea medicine would make me keep it down when all it did was make me drowsy and umm…nauseous! I fell asleep mid slushy and she woke me up with a fresh cup. The doctor said I had to get more down because I had yet to go to the bathroom. Hello, that’s because I didn’t have to go. I tried to drink one last dose. It was cut time and I wasn’t supposed to have anything after midnight. I told the nurse to carry me to the bathroom and I would do something so she would have to leave me alone. I passed some foggy liquid and called her in. As I was standing there clinging to my IV pole ready to pass out from all the physical exertion and nausea I managed to grab my barf bag and expelled whatever foam my stomach acid managed to work up. I held out the bag for the nurse. So much for keeping that down.
I popped a sleeping pill and headed to bed. I was completely drained. Six o-clock am wake up call to my doctor, surgeon (just in case my intestines burst or needed to be removed) and more blood work. They couldn’t believe I hadn’t been running to the bathroom all night and gave me an enema to give it one last shot. Oh, the enema. They should use those at frat parties and see how long the guys can hold it. I went fifteen minutes - twenty if you count the five it took to drag my body and IV pole across the room into the bathroom.
The nurse told me to keep my underwear off for the colonoscopy, but I knew the surgeon was coming back to check me out before I went in. There was no way he was going to flip up the blankets with me in no underwear, so I snuck it back on. I wish I could have seen the look on the doctor’s face when they lifted up my Johnny as I lay passed out on the table and they realized they had to take off my underwear.
I woke up about five hours after in the hospital bed. I was on my third bag of blood transfusions. I wouldn’t get to talk with the doctor until he made his rounds the next morning, but my mom showed me the pictures from the colonoscopy. Disgusting. My colon was ridden with ulcers, puss, and blood. The entrance to my small intestine was so swollen that they couldn’t even fit the scope in. I was supposed to be on complete bowel rest. The only thing I was allowed to have was ice chips, and if they melted the nurses took them away. I had some visitors that afternoon, popped another sleeping pill and was out for the night. The next morning at 7:00 am I was wheeled down to x-ray for my upper GI series. They sat me in the hallway with two cups of barium and said to drink it as fast as I could. Hah, that’s funny. Two days of nothing but ice chips and now I’m supposed to chug down two cups of what might as well be cement. I got it down in about half an hour. I was proud. They said it would take about 45 minutes to pass through the small intestine. Every half hour I had to crawl onto my stomach on the x-ray table to check and see if it had gone through. Four hours later it had passed through the small intestine. As if hopping up and down off the table and drinking barium wasn’t painful enough, for the GI series the doctor took a paddle with a ball on it and pressed it around my stomach to move my small intestine around. “Let me know if this hurts, but it shouldn’t. It’s like a balloon on your stomach.” #@!$* Some balloon. Might as well have been pelting me with wrenches like in Dodgeball.
Hopefully that was the last x-ray I will have to take for a while. I got more x-rays taken in those three weeks than most people in a lifetime. Holy mother of radiation. Five hours later I returned to my room. Time to meet with the doctor. “It’s official. You have Crohn’s disease and at the moment also have ulcerative colitis.” No shit, Sherlock. The doctors prescribed antibiotics and antiparasitic drugs that had to be given intravenously for maximum effect. To add to this, my body was so overridden by infection that it had become terribly inflamed. To combat this, I was prescribed two heavy-duty, highly toxic steroid medications, hydrocortisone and prednisone.
Crohn’s disease is a much worse diagnosis than I had imagined. It is a condition primarily involving the small bowel and the area where it joins the colon that causes the intestinal wall to thicken and cause narrowing of the bowel channel, blocking the intestinal tract. The result is abnormal membrane function, including nutrient malabsorption. Crohn’s disease is incurable. Patients with Crohn’s disease experience frequent and progressive symptoms of abdominal pain, diarrhea, and extreme weight loss as seen in other wasting conditions such as cancer and AIDS. Many patients experience premature death. How’s that for making you feel hopeful about your diagnosis! At the moment it looks like I will be on medication for the rest of my life. Yet, the side effects of the medications are almost as bad as the disease itself.
I stayed in the hospital for six days. I was living off of Ensure, Italian ice, and ice chips with apple juice. I was feeling pretty decent. I wasn’t eating so I wasn’t in pain, and all the blood transfusions and medicine had helped me gain back some strength. Granted I smelled rank and was puffed up like a balloon. I gained 10 pounds from the IV liquid. That’s how dehydrated I was. But I was almost feeling decent. I was even laughing. Thank you so much to all my family and to Sarah, Robbie, Cynthia, Mike and Andy for visiting me and taking care of me. You made my stay that much more bearable.
I was starting to lose it in the hospital, though. I couldn’t get any sleep. They were checking my vitals every two hours and changing my IV every hour and a half. After a couple of days my right arm had become all bruised and swollen from the IV and it took three nurses and an EMT an hour to get an IV into my left arm. Later that night the meds they gave me turned my veins all red going right up my arm so they had to move it to my right hand which is still bruised. That bled like a mother.
I was starving to death and when I finally got to eat, all the pain and nausea came right back. The food sucked anyway. Andy wouldn’t even eat it - and that says something. Thursday morning the doctor said that they were possibly thinking that maybe I could go home Friday, so when he came back that afternoon I thought something was wrong. The practice is in Somersworth and the docs made their rounds at 6:00am. So he walks in and closes the curtain.
“Are you in pain?”
“No.”
“Are you nauseous?”
“No.”
“Did you have diarrhea?”
“No.”
“Do you want to go home tonight?”
“YES!”
So they called my mom and unhooked the IV. I was out of that bed so fast that by the time she got there to help get everything together I was all dressed and had everything packed. All that activity made me a little green around the gills but I was so excited to get out of that hospital.
I’ve been home from the hospital for nine days now. I’ve been taking 23 pills a day around the clock. The side effects are horrible, and after eating for a few days all the pain has come back. I can’t go anywhere because my immune system is so completely shot. One of my meds is to shut down my immune system to keep my body from rejecting the new blood and my intestines. I’m on tons of steroids which will more than likely add up to some marked weight gain. I’m an insomniac! You’ve seen me on the internet way past my bedtime. And when I do sleep it’s all nightmares. One night I dreamt of five different scenarios for the apocalypse, one of which involved me giving birth to the antichrist. The next night I dreamt that they let me go back to school to pack my stuff and Dr. Gratto locked me in a room and gave me three hours to do my make-up work. I’m losing my hair by the fistfuls. Even my eyebrows are starting to fall out.
My intestines are still so bad that they can’t very well assimilate the nutrients in the food I eat so I am still suffering from malabsorption and anemia. My stools just leak blood into the toilet from all the internal bleeding. I’m on a diet with no fruit, juice, vegetables, wheat, fiber, and very little dairy. Not that I ate most of that to begin with because of my eating disability (it all makes sense now doesn’t it).
The steroids make me starving out of my mind, but my intestines can’t handle any substantial amount of food. So, yes I’m out of the hospital, but still very sick. I’m back at the doctor’s on Monday and perhaps I can come back to Gburg at the end of next week to say goodbye, pack up, and see if I can salvage anything academic wise. I miss everyone. I hope you didn’t forget about me. If you read this, thanks for indulging me and my story. Hopefully it made you laugh a little. I hope to see you all soon.
Kimberley