In college I had a great time. I went to school, I did well, I had an active social life, and yes I drank and ate poorly. Looking back I did not eat as poorly as the general public but I was poor. Top Ramen and tomato soup were my staples. I was sick all the time. Twenty minutes after I ate I would need to use the restroom. I did not want to eat out or at friends homes because it was embarrassing. Who wants to be the girl who stinks up the bathroom. I thought it was stress. I thought it was something I ate. I thought it was the 5 beers I drank the night before. It only increased in frequency. I went to my college health center and they told me it was probably IBS or an allergy to dairy. Nothing I tried or took worked. In fact, anti diarrhea medicines worked for 24 hours and then my symptoms came back with a vengeance. Not fun stuff. I was tired most of the time. I could not stay out till 2 or 3 am like most of my friends. I needed at least 8 hours of sleep, still do. BUT nothing was really serious enough at the time for me to do something about it. Plus, the symptoms were gradual and I did not see a significant increase all at once.
My first year of teaching, by the way I am a kindergarten teacher. No stress there. My first year of teaching was hard. That is typical. I was nervous, stressed, tired, and did not get the exercise that I was used to. I realized I had a problem when I had to dash out of the classroom to use the bathroom at all hours of the day. My students were so understanding, they were a 3rd/4th grade combination then. I was not leaving 5 years olds alone. I also had a code sign with a neighboring teacher when I need to run off to the restroom. Still, not the best impression at a new school with new teachers, a new boss, and concerned parents. This still was not enough for me to go to the doctor. I was always taught that things will get better with sleep, exercise, and healthy food. In general there is no need to run to the doctor for every little thing.
It was when I started throwing up all night long that I realized I was sick. I would feel full and swollen for a day or two. I would be starving but my stomach was full. I was tired and cranky. It would come to a climax always at night. I would feel sick. I would lie down, put a heating pad on my belly, I would take several baths, and nothing worked. Before midnight I would be throwing up. I would throw up for hours. It would last until sunrise usually but sometimes longer. I could not sleep. I could not get comfortable. I would fall asleep against a wall, standing up, in my house until I felt my body slipping. I would lie on the cold tile floor in my house. Nothing calmed my body. I am a sleeper by nature. The minute my head hits a pillow I am out. But I could not fall asleep for the life of me. This started out happening every other month, then monthly, then weekly.
I began my search for a doctor. Being a teacher I did not have many options. Teachers are supposed to have great health coverage but that is a thing of the past. Costs too much, but that is another story. I would see a doctor and tell them my symptoms. They would say that I was young (24 years old then) and that it was probably stress. They would then offer me some version of anti depressants or anti-anxiety medicine. I knew in my heart that it was not all in my head. I knew that something was wrong with me. I went to 4 doctors, tried two types of anti depressants, and months of agony before I found a doctor that listened. She was my general practitioner. I do not exactly believe that she thought something was wrong with me but she did get tests ordered for me. TESTS! You would think after all the x-rays, colonoscopies, barium swallowing I had done they would have an answer. OH NO, not yet. Then I was sent to a gastroenterologist. He was ok. He was not interested in my past history. He wanted to know how I feel and immediately put me on ASACOL. This was a low grade steroid. I found out later that they don't do much. They do little to control Crohn's (at least in my case) but you get all the lovely side effects. I was monitored and tried to eat things that did not bother my stomach. Which by the way is hopeless. What bothered me one day did not the next. I was sick of throwing up so I began to not liking all the foods that I threw up. Which left me few options of food I could stomace. Not to mention, if I ate, that meant that I would be on the path to throwing up in the next few days. I would be ok for a week or so and then hit a low point. I thought that the drugs were kind of working? I just wanted them to work so bad. I started to get sicker. I looked three months pregnant BUT WASN'T. My principal pulled me aside and asked if I was pregnant and would need to leave before the school year was out. That was uncomfortable. I was constantly rubbing my stomach. It hurt. I just wanted to feel better. One night I could not stop throwing up so I went to the ER. My doctor was out and I go another doctor from the same practice. He was fabulous. He had great beside manor and a great sense of humor to boot. I asked if I could see him instead. He said of course. I was put on an IV and medicine to help me to stop throwing up. I was given a prescription for a muscle relaxer. This way next time I was throwing up I could control it. PROBLEM was I would throw up the medicine (of course I did not know that until I tried it). I began to see this new doctor. He started me on another low grade steroid. I forget the name at the moment. I was happy because I felt someone was listening and cared.
I still got sicker though. I had a CAT Scan and for the first time ever the officially told me that I have Crohn's Disease. There is no conclusive test (to my knowledge other than the CAT Scan that can verify Crohn's, and at that you have to have an active infection and often scar tissue, which I had). I was so happy but mad that I had to go through all those terrible tests when all it took was one easy test. If I were to do it again, I would DEMAND a CAT Scan immediately. I got sicker and sicker still I was loosing a lot of weight and it was summer vacation now. I could eat white rice, chicken broth, and gatorade. I had to move homes and could not stay awake long enough to help my family adn friends help me move. My parents, a friend, and my boyfriend had to move everything. In fact, my mom was vacuuming next to my head and I did not wake up. I was that tired. I am a sleeper but not during the day. I can't even take naps during the day. I am also a hard worker. I would never have let my parents move with out my help before that day. Though I of course appreciated their help. That night I got sick. I was so sick throwing up but trying to be quiet as to not wake my parents up. I am not sure why now that I am thinking about it. I had been so sick for SO LONG that I was used to it. I did not want to bother anyone else with my problems. People had been so understanding and helpful that I was ashamed to still be sick. My mom did get up to check on me and I could tell she was worried but I did not see the panic my dad expressed that she felt that night. I found out later that she went home the next day and stayed up all night looking up Crohn's disease and doctors. She ended up at the website for Stanford Hospital. SHe found the women in charge of the gastroenterology department specialized in Crohn's disease, Dr. Christine Cartwright. She is the woman who saved my life.
Meanwhile, my local doctor scheduled a colonoscopy (again) and he found nine polyps. They were not cancerous, thank god. They were there due to all the irritation in my colon. Other than that he said I was fine and looked good. My mom called me the next day. She demanded that I call and make an appointment with Dr. Cartwright. I called the hospital and they took my insurance and I made an appointment. Problem was I had to wait I think almost 3 months. I had a new job at a new school. It was October. I love the fall and I love Halloween. I was so excited. I was sick but preoccupied with my new job and new students. I told my mom to meet me at Stanford. We met and planned on going in and meeting with the doctor and then going out to lunch. Lunch never happened. Dr. Cartwright was all business. She is direct and exudes confidence. She simply asked me for my history and not to skip anything. Start from the beginning and she meant it. She only interrupted me to ask for MORE detail and to CLARIFY. She listened to me like nobody else did. She gave no appearance to be making judgments or jump to conclusions. When I was done she looked at me and said " You are one very sick girl". These were the words I was waiting to hear for so long. What came next was not something I thought she was going to say. She asked me not to be alarmed but asked to admit me that day. She said it was her intent for me to have surgery. I was speechless. My mom and I looked at each other with blank faces. What? We are going out to lunch? I feel ok today? My mom negotiated for us to drive back to my house to get clothes and books. I was still in shock. I have to admit I was a little excited. I knew that this was going to change my life.
When I returned at 3pm, as promised, I was confused, excited, nervous,and scared about what to tell my new boss. My mom called my work and said that I would be having surgery and not be back to work for at least 4 to 6 weeks. That was that. She did not want me to worry about it more than that. Of course I did but it all worked out in the end. The substitute that took over for me was a students' mother and now we are very close. I had to stay in a hospital bed with NO FOOD for three days. I was subject to a battery of tests. In the end the surgeon and my new doctor decided it was necessary for an ILEUM RESECTION. I was to have laproscopic surgery. My surgeon only does this surgery. It was his only job. I had confidence in him and my new doctor. My parents were much more scared that I was. I was actually just starving to be honest. I wanted to eat. I had not eaten things that I loved in years, let alone anything in the past three days. I had the surgery. I survived the surgery. I had much more wrong with me then they knew. I had 7 inches of my small intestine removed. It was as hard as a PCP pipe due to infection. I had my secum removed, my appendix removed, and I had a fistula. Fistulas are bad. This one was imbedded in my body and had not reached the surface of my body. I have three scars to prove it. I am doing excellent now. I am on 6MP and feeling great. I am not thrilled to be on 6MP but for the time being I do believe it is necessary and I do not want Crohn's to come back now. I am not free of Crohn's disease. It is a chronic disease. It could come back at any time. I am in remission but that means really nothing for Crohn's disease. It may come back next year, in ten years, or if I am lucky never. Now I am living my life day to day.
My regrets are many. I can't live my life looking back. What I can say is the BEST THING I EVER DID WAS TO BECOME PROACTIVE IN MY LIFE, MY BODY, AND MY CARE. You have to listen to your body and listen to heart. I knew I was sick. I did not stop until I found a doctor who listened, believed me, and took care of me.
Through endless nights on the internet I have several books I will recommend someone with Crohn's of Crohn's like symptoms to read. I have a great diet I will suggest. I am NOT A DOCTOR. Doctors in my experience will not agree or disagree that diet and exercise make a difference. I believe diet and exercise always make a difference. There is a great diet I will recommend. It is a cross between two diets in two different books. We are all different and all have different symptoms but I hope my experience can help someone out there. I will post the books, the diet, and recipes soon. I plan to post more about what Crohn's disease etc. soon. I would like to post website that were beneficial as well.
I hope my story helps someone. Remember to be proactive for yourself, nobody else will.
