Monday, September 7, 2009

How I Got Here

I actually consider myself quite lucky that I even know I have Ulcerative Colitis. I sometimes wonder how many people are out there with this illness--knowing something is not quite right--but not knowing what it is. I was sick for five years before I found out I had UC. (Sorry, this is going to be a long story).

I had always had a sensitive stomach. I would always get butterflies in my stomach whenever I was nervous or upset. I remember pretty clearly the day I knew it was more than just nerves. I had been asked to be a guest lecturer for a college class of 500 students. Being quite introverted I was scared out of my mind. The morning I was supposed to speak I was incredibly sick and spent most the day in the bathroom. I still went to give my presentation and before it started made several trips to the bathroom then too. It was then that I first saw blood.

I was convinced I was dying. I thought the blood meant cancer or something worse. I was a college student and didn't have a lot of money so I went to the free clinic at the University. The doctor there talked to me about my symptoms and checked the regular stuff (blood pressure, weight, etc.). She asked how many credits I was taking. I told her 21 (it is considered full-time to take 12 credits) and that I was a student fellow and also had a part-time job and an internship. She said with all that going on it was no wonder I had these symptoms. She told me to make sure I was eating well, to get plenty of rest, and to try to eat more fiber. Looking back at this time, I was under an incredible amount of stress. I thought I could handle having that much stress if it were for just a short amount of time (I was close to graduating). But I think now all that stress triggered my UC.

A year passed and I was still sick. In fact I was quite sick every morning though I would feel better as the day went on. I went to a nurse practitioner. She also had a discussion with me and said it looked like I wasn't handling the stress in my life very well. That confused me a bit because I really didn't feel like I was under stress at that time, especially compared to how I was the year before. She prescribed sedatives for me and told me to have a follow-up appointment in a month.

Back in her office a month later she asked me to tell her on a scale of 1-10 how much improvement. I said a 2. She frowned and said she would have thought I'd be feeling a lot better than that. Then she prescribed anti-depressants and again told me to follow-up in a month. The process of me trying the prescriptions and returning for a follow-up continued for quite some time. Each visit she would prescribe a stronger medication, but I never really felt much better. Eventually I decided if it was about stress, it was just something I needed to get control of on my own. I stopped seeing the nurse practitioner. I started a regular exercise program. I also learned about a friend with Caeliac disease that had similar symptoms so I got tested for that, but it was negative.

My mother is really into alternative medicines. Around this time she started taking me to all kinds of wellness specialist, chiropractors, and spiritual healers. I would call them all witch doctors. I tried all kinds of alternative medicines including foot baths, foot zoning, laser therapy, clearings, and color therapy. They had me taking all kinds of vitamins, herbs, and special diets. I was skeptical of all of these alternatives to traditional medicines. My mother would pay for them because they weren't covered by insurance and I wouldn't have tried them if I had to pay for them. Ultimately though, I never felt better, not even after trying the different treatments for several months. When I finally did discover that I had UC I started feeling slightly better within days of starting Asacol. To do this day though my mother still thinks the reason the alternative treatments didn't work was either because I didn't believe them (and thus willed myself into still being sick) or because I didn't stick with the treatments long enough. But I couldn't let my mother keep paying for the expensive treatments that weren't working and to me seemed no more beneficial than a sugar pill. Sometimes they would say they could sense an emotional problem for my illness. I think there could be some legitimacy to those claims and I'll write a post about that later.

More time passed and I had grown accustomed to my condition. I didn't realize how sick I was because I was just used to it. At this point, I would get sick anytime I ate anything. And I felt sick pretty much most of every day. People would ask my mom if I had an eating disorder or cancer because I had lost so much weight and I looked (and felt) horrible. One evening I went to a movie and ate some theater popcorn. After I got home I felt extremely sick. It was the worst I had ever felt with extreme abominable pain and diarrhea. The pain was worse than giving birth (and I'm a mother, so I know!). My husband took me to the Emergency Room and after four hours and receiving some type of pain killer (I don't remember what), they sent me home. The next day I went to see a family physician. She suspected the violent attack was due to an allergy to something I ate. Probably the movie theater popcorn since that is the only thing that was unusual that I had eaten.

I had my blood drawn and tested for allergies. They came back positive for mild to moderate allergy of corn, wheat, and soy. The doctor thought I had the attack because of the popcorn and that I was regularly sick because of everything else I ate. I was instructed not to eat corn, soy, or wheat in any form for the rest of my life. I met with a dietitian who helped me create menus. It was very difficult because so many things use corn or wheat as fillers and alternative food products usually used soy. Still I did it. It was very hard and very expensive but I went one full year without eating any of the foods. I was willing to do it because I just wanted to feel better. But I just kept getting sicker. I thought I must still be eating the foods I was allergic to. That maybe I was missing them in the ingredients or that there were trace amounts in the foods I was eating.

During this time I was pregnant with my son. Because of my dietary restrictions I was eating really healthy (there aren't a lot of junk foods or dessert type foods without corn, wheat or soy). I was still sick though and talked to my obstetrician about being sick while I was pregnant. She said I probably had hemorrhoids from having diarrhea so much and that was what the bleeding was from. She felt that if I continued to not eat those things I would get better but it would take some time for my body to heal.

Then, my son was born. This was another really stressful time in my life. I was still working (though working from home then) and I was also helping writing a grant for my old college department. The night wakings/feedings and responsibilities of being a new mother were overwhelming. I think I weighed 107 then. A couple days later my body went into shock. I was freezing and couldn't get warm, my temperature had dropped quite a bit. I had another trip to the emergency room.

After this my mother had had it. After a friend of hers told her I really needed to see a specialist she convinced me to see a Gastroentrologist. I had thought about going to one before but I was scared they would make me have a colonoscopy which I was terrified of having. I went and he did make me have one. It's really funny because the colonoscopy wasn't bad at all. In fact I don't remember any of it! The worse part was the preparation, which wasn't that much different from how my days went anyhow. (If anyone out there is scared of getting a colonoscopy, don't be! They really aren't that big of a deal!) That is when I found out I had UC.

Doctor prescribed Asacol and a few months later I was completely better! It was amazing how it felt to not feel sick at all! I couldn't believe I was willing to live with the symptoms when I could be feeling so good! After a couple more months on the medicine the doctor said to stop taking it and to see how I would feel without it. I still felt great! Every morning I would have so much gratitude when I was in the bathroom (weird, I know). I honestly thought I was healed and would never be sick again.

Eleven months passed and I suddenly had a flare-up. It was surprising to me how quickly I went from feeling just fine to feeling just as bad as ever. I desperately called my gastroenteroligist but he was on vacation and couldn't see me until the next week. It was one of the longest weeks of my life. I begged the nurse to put in a prescription of Asacol for me but she said she couldn't until I saw the doctor.

I finally got to see him and it has been a couple months now. I have gradually started feeling better. It seems to be taking longer to feel well this time than last time, but maybe I have just forgotten. I am taking 10 pills a day and hope that once my symptoms are under control I can reduce the amount of pills. This time I won't stop taking the medicine. My doctor said I will probably have to take pills the rest of my life.

Call it what you want, but I consider getting the diagnosis and the medicine a miracle in my life. I hope everyone that feels ill can get the help they need. It is amazing to me that I had met with so many medical professionals without any of them considering UC. Next time, I'll start with the specialist.

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