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My personal journey of living with Ulcerative Colitis
By Heather B. Jacobs
AuthorHouseCopyright © 2014 Heather B. Jacobs
All rights reserved.
My Life Changed Over Night June 10, 2010
I can't remember being so uncomfortable ever in my life: this hard bed, these thin sheets, and worst of all the blue walls and plexi-glass window. These pajamas they are making me wear have a huge opening in the back, and they think they make up for that by giving me a nice pair of itchy pants. It's all so unfamiliar to me. I long for my big comfy comforter and my pink walls, my flannel jammies and my own home.
My life changed last night and will never be the same. It all began with my graduation night. I graduated 8th grade from the Catholic school I had attended since kindergarten. Both of my grand moms were in town for that big night. It was an emotional one for me. My last year at school was a stressful year with lots of drama with both the teachers and the other students. I'm happy to be done, but also already a little nervous about starting high school. I will be moving up to a small town in the mountains in a few weeks and will start a new life there. My family had bought some land there a few years ago to build a vacation cabin, which then became a dream house, which will soon be our home. I'm sad to leave my friends and the people I've known all my life, but I know that I will love my new home and moving will be a good experience.
So how did I end up in this hospital bed? Well, when my graduation ceremony was finally over, my mom, dad, little sister, my grand moms and I were going to celebrate with dinner at my favorite Italian restaurant. Everyone was excited! But, in the car on the way there I began to complain of stomach pain. I thought it was nothing; that I was just hungry, so we continued onward to dinner. All was great, food was delicious and everyone had a good time. We all went off to bed, exhausted after a long day and the next morning headed up to our mountain house. That is when the trouble started. Without any warning, I started having more and more stomach pain and bleeding. I was freaking out!! My mom took me straight to the doctor. They ordered some tests, took my blood and some poop and sent us home.
Over the next two days, I just got worse. My mom called the doctor and she said the lab results weren't back yet. At about 2AM on the third day, I woke up, sick as a dog. I spent an hour in the bathroom and then passed out - Stone cold on the bathroom floor. My mom bundled me up and headed for the emergency room ... and so the journey began.
My mom and I sat in the cold emergency room for at least 2 hours with nothing to show, but a wristband. In severe pain I sat curled in a ball in a waiting room chair. I watched person after person go in to see the doctor before me. Some with broken arms, some just wanted drugs, and others you could see were in pain. There was one man I remember distinctly. He was old, about 85, and was with a younger woman, his daughter I imagine. They too had been waiting for hours and began to get fed-up. The woman went over to the ER nurse and started yelling at her. She was saying that the man was in severe pain and if someone didn't help him now he would die right there. We looked over at the man who was sitting in a plastic blue chair like the rest of us, but he seemed quite content. He didn't appear to be in great pain nor did he appear to be dying. This frustrated me, because I knew that I needed help immediately, but I waited as multiple over-reacting phonies passed through the doctor's doors. I wondered how there could be so many people in the ER at 4 in the morning! My mom held me in her arms until finally my name was called, "Heather Jacobs".
Must have slept another couple of hours in the ER, because the next thing I remember was being in a wheelchair to be taken by ambulance to another hospital. I'm kind of mad about not being allowed to walk myself. It's not like I'm some kind of mental patient or a big flight risk! The wheelchair was probably a good idea though, since I kept passing out. That was better than being strapped onto a gurney in the ambulance. Only good thing was that one of the paramedics that lifted me into the ambulance was totally cute. Too bad I looked like crap.
I don't have my own room. I am in ICU and I am sharing with two other children. One is a baby, a few months old, I would guess. She has lots of IVs and sleeps, lifelessly. Then, there is the boy. He is about 4 years old and very confused. He doesn't understand why he is here and is insistently asking questions that can't be answered, like, "when are we going home?" There are constantly nurses, doctors and people coming into my curtain room. The worst visitor was the priest. He asked if I needed to give confession before he went home for the night! He acted like I was going to die. Am I going to die?
Just a few hours ago my nurse came in to give me a new IV. This time it's a 20 gauge, whatever that means. The first IV didn't hurt that bad, just a pinch, but this one, oh man! She poked my arm and instantly blood shot at least a foot into the air and covered my nice thin sheets. I already didn't like her, and then she said, "Oops, sorry about that, you have small veins." Yesterday, I had big easy veins and today they are small? I'm confused. I wonder what the next one will be like? Ouch ...
"Welcome To Hell. We Have Pee-Water." June 11, 2010
Last night was a hard night for me. Not only because of the pain and the constant trips to my personal toilet, but because of what I heard. The baby across the way (the one that is only a few months) didn't make it through the night. I was lying in my bed, partially asleep, when I heard her monitor sound out. Her lifeline had gone flat and the alarm sounded. Nurses came running from every direction; doing everything they could to resuscitate her. But nothing could be done. When they turned off her machine, the cries from her father, who had never left her side, broke my heart. He had lost his baby.
I know that this memory will never leave me, because it truly broke my heart. Words cannot describe the feelings this memory left behind.
I don't have my own bathroom, well I guess in a sense I do. It's portable. A small plastic toilet that they wheel into my room whenever I have to go is what I have to call my porcelain throne. I have to have some tests done, which means I have to drink some disgusting stuff that tastes like pee-water. The test is a Meckel's Exam to see if I was born with a little pouch of stomach growing into my intestine. Therefore, I am forcing down this pee-water so the doctor can image my tummy.
Seems like I was under that metal pan for hours, but it was only half an hour of no movement whatsoever. Just the sound of clunks like the two-ton chunk of metal suspended from the ceiling was going to come crashing down and smash me flat onto the cold, hard table.
* * *
Okay, so I don't have Meckel's Diverticulum. That's good, but now it just means more tests ...
Now I am moving on to an Endoscopy and a Colonoscopy. With the Endoscopy they are going to put a tube down my throat to see into my stomach and intestines. With the Colonoscopy, they are going to go the other direction ... up my butt.
It might be nice to get out of this curtained room for a little while. Last night, around 1:00AM, the sheriff and a bunch of other people came into the curtain room to talk to the doctors about a six-year old boy who had just come in. Apparently, he fell down the stairs at home; they think his mom pushed him ... There was a lot of yelling and they were only about 3 feet and a curtain away. The boy was bleeding, the father was crying and the mother was very upset at the police. It was being threatened that CPS was going to be called ... I wonder if they were.
On the other side of me is a child who looks like a man, but he is in a crib. He screams a scream that doesn't sound like speaking. It sounds like the groan of a walrus in severe pain. And I know that he must be suffering, but I don't know what of.
I hate it here. Everywhere I look there is pain, and suffering and fear of the unknown.
I am scared and it doesn't help that I have to jump on the plastic toilet next to my bed every half hour.
Meeting Doctor Asshole, MD June 11, 2010
Well now I have no idea where I am. Last thing I remember I was in the pre-op area with a Russian lady putting sleep drugs into the IV in my arm. Shortly after that, the T.V. shot a mile away and then came super close to my face. Lights Out!
So now I am in a private, sterile room. No more curtain room, but still super thin sheets. At least I have my own bathroom and a shower.
Still a little loopy when my grand mom came in. She was a little confused about what was going on and freaked out just a tad. My sister and my dad were with her. My sister, Merel, brought me knitting supplies; to have something to do all day and my dad brought a bag of clean underwear.
My next visitors were the doctors. With them was the one I like to call "Dr. Asshole, MD." He was a real prick! Right away he started telling me that he does lots of surgeries and takes out lots of colons. "Sometimes kids get new ones, but not always", he said. "The kids that don't get a new colon get a colostomy bag." Basically, this is a bag attached to the outside of their stomach that their poop goes into. That's disgusting! ... No way!
There is a whiteboard in my room. It is attached to my bathroom door so we can record how much and how often I poop. It was a lot and mostly blood. So I decided to use the whiteboard as a tribute to Dr. Asshole MD. I wrote his 'name' all over it!! Then, unfortunately, the medical students came in to ask the same questions again, "Have I been drinking lake water? Had we travelled out of the country? Had I been drinking anything to poison myself?" No, no, no. That's when my mom blew a gasket and told them all to get out! It was a little bit embarrassing.
* * *
The nurses keep coming in to get my 'stool samples'. I actually have to poop into a bucket in the toilet, and then my mom has to measure how much and then call the nurses. It smells yucky. Mostly blood, so it doesn't smell like poop.... Worse!
Now, the nurses are wearing gloves, and gowns and masks since apparently I have been put into 'isolation' because I am now contagious. That's new. The nurses look like those guys on Monster's Inc. who shower down the monsters after they touch a kid! Boy, that makes me feel super special.
Sneaking Out Of Isolation June 12, 2010
I'm allowed to eat today. I was excited until I saw the menu. Not a lot of choices on a "Low-residue diet". It seemed like Mac-n-cheese would be a good choice, but they managed to make it disgusting. I passed it around to my family so everyone could taste how bad it was. It literally tasted like someone had thrown-up on a bowl of noodles!! My dad refused to taste it. The sight alone was enough for him. There was a bowl of jello ... there was always a bowl of jello ... that was good.
So now ... I am hungry.
I am so glad mom got some white bread from the cafeteria. It's crazy that we snuck out of isolation to eat some bread. Mom thought a "picnic" with some fresh air would be nice, so we walked to the courtyard on our floor. It was kind of tricky walking with my IV pole and hospital gown, but I did it. The nurses saw me walking out and even said hello. Then, just as I was finishing my bread and butter, we got busted!
One of the nurses came out and yelled at me because I was an "isolation patient and could be infecting all of the others". The nurse this morning obviously didn't get the memo because she came in without the Monster's Inc. sterile-team costume and suggested that some fresh air would be nice today.
So ... we walked back to our room.
On the way I saw a boy in a wheelchair. He was bald, and his family surrounded him, all crying hysterically. I did not know what was going on until I overheard them speaking. "It is going to be okay, you will be with Jesus soon". They were saying goodbye ...
There are no words to express the feeling that comes over someone when they witness something like that. A child, with his whole life still ahead of him, had to say goodbye, too soon.
This is when I realized that others had it worse ... and that I was going to be okay. I had to be.
* * *
It is kind of late now, but the nurse just took my IV out and said I could have my first shower. Having an IV pulled – slowly pulled- out of your vein is definitely something you can feel. A shower is also something you can feel. And boy did that feel good!
Beep Beep Beeeeeeep.... June 13, 2010
Today was a long day ... My mom and I have been forced to take up knitting. I have been released from isolation and moved to a new room–which should be a good thing – but my new nurses freaked out as soon as I fell asleep. My heart rate goes too low. That led to a full EKG to basically inform everyone that since I am an athlete my heart rate runs low.
Papa and sissy visited. They decided to mix things up a bit and ride their bikes to the hospital.
Basically today was spent knitting and visiting. After knitting we enjoyed a gourmet dinner consisting of rubber salmon, cold rice and frozen peas. All I can say is thank God for the jello.
M ... R ... I ... June 14, 2010
Sissy brought me a teddy bear last night that she won at the amusement park. My dad brought me more clean underwear. Thanks Papa! I slept with that teddy bear all night. He is kind of ugly ... in a cute sort of way. I'm not really sure if it is a dog or a bear. The head, at least twice as big as the body, has plastic eyes and a big smile. My teddy dog is the same pale blue color as the sheets.
* * *
Today is the day I get sent into the magnetic tube. Yippee! MRI day ... Too bad my teddy dog can't go with me. He's gone. He got folded up in the sheets and taken away. I went to the bathroom for two minutes and the nurse changed the sheets with my teddy dog in them. If only he had been a different color.
No one told me I was going to be forced to drink 3 liters of Barium – worse than the Pee Water. Barium resembles ground up, pureed puke and tastes about the same. After handing me three bottles of this nasty stuff, the nurse informed me that I had 15 minutes to finish it all. Fifteen minutes seems like a long time, but not when you are on the edge of puking up every sip. Then it seems like a lifetime. At first, I took my time, but then was told I would lose my time slot for the test if I didn't finish it all, so I downed the last bottle in 5 minutes ... Take that!
To make matters worse, I was drinking Barium when I met the child therapist. Short, wavy brown hair and a squeaky voice. She said she was here for me if I needed to talk or wanted to be comforted during this tough time. She also said she was available for my parents and family because this would be a tough time for them too. I don't think I will be calling her any time soon. If anything, she seems like she would just make matters worse. Her voice drove me crazy, and she kept touching my arm when she talked - little did she know that blood had just shot out of it and it hurt! She was supposed to help me feel calm while I had to drink three bottles of barium in 15 minutes.... Not helping! She then felt the need to inform me that "I might feel like I am suffocating ... then I might need to throw-up while strapped to the table ... Which could then cause me to suffocate ..." She also let me know that "the noise can be deafening ..." Then she reassured me with some goggles "so you can watch Little Mermaid." Yeah ... while you slide me into this magnetic tomb that I can't escape from, I will remember how much I love Little Mermaid.
I guess the mean Barium Nurse wasn't so bad after all. After my horrifying experience inside the loudest, coldest cylinder imaginable I was greeted by a stuffed Panda bear from the gift shop, seated on my wheelchair. My mom had told the nurse about my missing teddy dog while I was in the MRI, so the nurse got me the panda.
Home At Last!!! June 14, 2010
It is late and I am exhausted, but I'm home. It's just my mom and me. Merel and Papa have gone up to our new house in the mountains because we are in the process of moving. We built a house up there about two years ago and have decided to make that house our home. My sister will be starting 6th grade at a whole new school and I, a freshman in high school.
I have Ulcerative Colitis. The doctors told us it is an autoimmune disease that I will have the rest of my life. Basically, my body is attacking my own colon and leaving big, bleeding ulcers behind. They told me to get used to life with a chronic disease, because now it will forever be a part of my life ...
Excerpted from I'mpossible by Heather B. Jacobs. Copyright © 2014 Heather B. Jacobs. Excerpted by permission of AuthorHouse.
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Most Helpful Customer Reviews
I found this to be a really candid and honest book. I was very impressed with the information that was provided and the experience that was shared. I have thought of many people I would like to give this book to. The author provided recipes at the end which made it that much more important to anyone dealing with food limits.