Amelia's Story

I was 10 years old when I started experiencing nausea, vomiting, diarrhea, fever, abdominal cramps and listlessness. After visiting my pediatrician, he told my mom I had a stomach virus and to give me liquids for the next few days and the symptoms should subside. After a couple of days, I was feeling better but not by much. I still couldn't go to school because of the weakness.....I couldn't keep any solid food down. The next week, I was back in the pediatrician's office with the same symptoms, only worse. Again, he sent me home on a liquid diet and bedrest. After a few more days of not getting any better, my mom took me to another pediatrician. This doctor listened to what had been going on for the past 2-3 weeks and started asking about family medical history. "Is there anyone in the family with any chronic illnesses?" he asked. "Yes," replied my mother. "I have Crohn's Disease". After a few more minutes of questions, I had an appointment with a gastroenterologist.

Blood tests......upper and lower GIs........the dreaded "scope"..........it was all positive. I was 10 years old and I had Crohn's Disease.

Being only 10 years old, I didn't quite understand the disease. I just knew that it made my mom so sick that she had to be hospitalized and if she was running for the bathroom, you better get out of her way. She was so upset with my diagnosis that we went for a second opinion....all the while knowing in her heart that I DID have Crohn's Disease. She felt guilty and responsible for me being sick. The second opinion confirmed it yet again. The stress of it all made my mom even sicker.

About 6 months after finishing the medications, I had a week where I was not feeling well at all. My gut had started to cramp again and eating became a chore once again. I also noticed extreme joint pain in my legs and hips. I had to have a tutor come to the house with school assignments. It was right around the Christmas Holidays....my favorite time of the year but I couldn't enjoy it. Helping put up the Christmas tree took every ounce of energy I had.

In the middle of the night, I woke up with the hardest, most painful abdominal cramps I had ever had. I got up to go to the bathroom and I remember walking down the hall when I heard this loud roaring in my ears and my vision getting very splotchy and distorted. The walls around me started spinning and just as I was nearing the bathroom, I went down. THUD. I had hit my head but I didn't care. My mom and dad heard me fall and came flying out of their bedroom. I remember mom saying, "Oh dear God!" and she kept saying my name over and over. I tried to respond to let her know I heard her, but my mouth wouldn't move. She sounded like she was in a tunnel....the roaring in my ears grew louder. I remember my dad picking me up out of the floor and taking me to the livingroom to put me on the couch while mom got a wet washcloth for my forehead and tried to put on some clothes. That is when she saw the blood on the floor. Blood on the back of my nightgown. Blood everywhere. They were talking to me, trying to keep me awake, but it all sounded like the teacher talking from the Peanuts cartoons..."WAH WAH WAH WAH WAH". I do remember mom wanting to call an ambulance and dad telling her that they could get me to the hospital quicker in the car. They bundled me up and I rode with my head in mom's lap in the backseat of the car while dad sped and ran red lights.

At the Children's Hospital, they put me in a room right away and no fewer than 10 doctors and nurses were beside me all at once. I kept drifting in and out of consciousness. My pediatric GI guy was called and he was there in no time too. He ordered an arteriogram. OH MY GOODNESS! That had to hurt and burn more than anything I had ever experienced. I was losing blood as fast as they could pump it in. My doctor did a scope........he came out and talked with my parents. My hematocrit had dropped to 16, my blood pressure was 60/40 and my colon looked like ground hamburger meat. I was hemorrhaging so hard and so often. He told my parents that he was going to do everything he could. Mom said dad cried. I've never seen my dad cry.

Little did I know that this would be the start of a 2 month hospital stay for me.....the first of MANY hospital stays to come. The next day, I was feeling somewhat better. The hemorrhaging had stopped for the time being and I was coherent enough to carry on small conversations. My doctor came in with his assistant who sat down on the side of my bed. She had a piece of paper and a pen and wrote down the word "hyperalimentation" and handed it to me and asked me if I knew what it was. I told her no. She and my doctor proceeded to explain what it was. I started getting a little nervous when they told me the type of access they would need to administer the hyper-al. I wasn't too keen on the idea of a tube going in my neck. But the final straw was when she said that during this time, my colon would be getting a rest...i.e....NO FOOD. I lost it right then and there. I could not fathom the idea of no food for at least 6-7 weeks!! Were these people crazy? Why, I would starve to death! She kept on explaining to me that I would not starve and that the hyper-al had all the nutrition I needed. I didn't hear that part nor did I WANT to hear it. All my 10 year old brain heard was "NO FOOD". I cried and I cried and I cried and I cried some more. Didn't help. THEY had their minds made up.

Over the next 2 months my health status was a rollercoaster. One day, I would be doing fairly well then the next day, I would have to have 2 or 3 units of blood because of the hemorrhaging. I was on 80 mgs of Prednisone by mouth along with other medications. I was allowed 90 cc's of clear liquid per 8 hour shift. I would try to take all my medications with the smallest amount of water and save my left over cc's allotment for half of a Popsicle. Those Popsicles tasted grand! I made each one last as long as possible. They even would let me have a few sips of chicken broth from time to time. That tasted so good too......anything with taste tasted good!

The holidays rolled right past. Before I knew it, it was February and I hadn't needed a blood transfusion in over a week. They were discussing letting me go home. Slowly, my intake was increased and I tolerated it well. Finally, my doctor came in and told me I could go home the next day. YEAHHHH HOOO!!!! I was so happy, I started crying. They came in and took out the central line.............I WAS FREE!!! I jumped out of my bed to go to the bathroom without the IV pole which I affectionately called "My Skinny Friend." As soon as my feet hit the floor, I heard a loud pop in my back and then extreme pain. Pain that literally took my breath away because I couldn't tell my mom I had just hurt my back. When I finally got my wind back, I let out a yell. Mom and the nurses helped me back to my bed and the doctor came back in. X-rays showed a slipped disc in the lower thoracic spine due to lack of inactivity and such high doses of Prednisone. That little stunt earned me another day in the hospital and a back brace to wear for 6 months.

Over the next few years, I did surprisingly well. From 9th grade to my senior year, I was hospitalized only once. I was your typical teenager on the go, working part time in a pharmacy and hanging out with my friends. I graduated in the top 10% of my class and was given "The Scholar of the Year" award by our English Department. I had a boyfriend and a "new-used" car (new to me.....used to everyone else). Life was going pretty good.

Soon after my 21st birthday, I started getting sick again. The usual symptoms ensued and mom and I were making weekly trips to the doctor for check-ups. The doctor I had at that time was not very aggressive in his approach for treating the active disease. He was more into research to prevent recurrence which was all fine, well and good but it wasn't helping me at that moment. I remember the afternoon we saw him for the last time. I was steadily losing weight, running fever and cramping terribly. I could barely sit up in a chair, so a kind, elderly couple got out of their seats on the couch so I could lay down. I saw the doctor and he just told mom to keep on with what we were doing and come back the next week. Mom said on the way home that this was ridiculous.....I was wasting away to nothing and I wasn't getting any better. When we got home, I went to bed and mom got on the phone and made me an appointment with another GI doctor. We saw him the next day and I give this man credit for saving my life. I was wheeled in to the exam room because by this time, I could barely walk. He examined me and did some blood work in the office and came back and sat down with mom and me. I was so sick, I couldn't add anything to the conversation so I just tried to listen as best I could. This new doctor wanted to do surgery. SURGERY?!? He had my attention then... although I don't think you could tell it on my face. He proceeded to tell mom about what an ileostomy was and that he felt with everything I had been through, it was time. Mom told him of the conversation she had had with the previous doctor ......that doctor said that if I had an ileostomy done, I wouldn't have enough good intestine left to live on. I remember his response clear as day. Pointing to me in the wheelchair, he asked my mom, "You call that LIVING?"

I was admitted the next day to the hospital. They started hyperalimentation to help "build me up" so I could withstand the surgery. I had started hemorrhaging so I was receiving blood transfusions again. Before the surgery day, I started having Grand Mal seizures. I had gotten up during the night to use the bedside potty and had a seizure while sitting on it. I woke up in ICU with 2 black eyes and a cracked bone between my nose. I had fallen head first in the floor and whacked my head on the base of my IV pole. It's a thousand wonders I didn't yank my central line out. They never really said why I was having the seizures, but we wonder if there was a mix-up in the medications I was taking or was there a mix-up in the blood I received that night. To this day, we still don't know.

Surgery was delayed for a few days while they ran tests on my head and brain but finally, the big day came. Mom said I was in surgery for 5 1/2 hours. When I came to, I was a little disoriented and wasn't sure where I was or what day it was. Then it all started coming back to me........I took a peek under the bedsheet. Yep. They did it. There was a bag on my right side....just even to where my bellybutton USED to be. I reached down and touched it and pulled my hand back as if it were a hot stove. I felt like I had been run over by a truck. I couldn't roll over onto my side without some assistance and a great deal of pain. I didn't know the magnitude of the pain I would be feeling. The ostomy nurse came in and she went over some do's and don'ts with the ostomy and the stoma. She took the pouch off and there it was......The Stoma. I felt sick to my stomach. I couldn't look at it. I turned my head as she proceeded to tell me what a good job the doctor had done with the stoma and how "pretty" it was. How she could have called that thing "pretty" was beyond me! I was moved out of ICU after a few days and into a private room where I started on that long road to getting better.

2 weeks after the surgery, I was released from the hospital. I was so glad to get home! I had changed the ostomy appliance twice in the hospital with the ostomy nurse there to help me out but I was going to have to change it on my own and I had a growing fear about it. But I had to do it. There was no bigger production than the one that went on in the bathroom when I changed it for the first time by myself. I had so much "stuff" in the bathroom at arms reach just in case. Mom laughed and said I could live in there with all the things I brought to the bathroom. But I wanted to make sure that once I sat down, I didn't have to get back up. And it went smoothly. It went great. My fear of this "rosebud" was diminishing and for that I was very grateful. I was finally dealing with this thing......physically and emotionally. I was afraid at first of the ostomy itself.....then I was afraid of how people would perceive me. I wasn't a bag attached to a person. I was a person with a bag. Once I believed that in my heart, I felt my self esteem grow by leaps and bounds.

7 months after the surgery , I was re-admitted to have reconstructive surgery on my bottom. The area where my anus had been was not healing, so they took a muscle graft from the inside of my left thigh and grafted it into the hole. I was in the hospital for a week.

That was in 1987. Since then, I have been re-admitted for problems brought on by the initial surgery like adhesions and pelvic hematomas. I did have a reoccurrence of the Crohn's near the stoma so a new stoma was made and a few more centimeters were removed from the small bowel. If I had a choice today to re-write the past and NOT have the ostomy surgery done, I would still have the ostomy surgery. It has given me a better quality of life than ever before. Sure, there have been problems and complications...but nothing like the pain and discomfort I was having before the surgery. With the good, we have to take the bad. I am currently on hyperalimentation at home. Seems that I am not absorbing food as well as I should be, so the nutritional support is important right now. I work full time plus overtime and have been with the same company for over 5 years now. Just the fact I am ABLE to work is a blessing in itself. I know so many people are debilitated and can't because of this disease.

I describe my relationship with my ostomy as a love/hate thing.......

I hate that it was necessary.......
I love the life and freedom it has given me.

Thanks for listening to my story.

Amelia Fowler
Memphis, Tennessee
USA

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