My entire life I have had stomach issues. I went and saw the doctor numerous times for my bouts of nausea and vomiting. “She’s just more susceptible to catching stomach viruses, that’s all.” When I was 16, I had missed so much school from stomach pain and these “bugs” that I went to the doctor thinking that something more serious must be going on. My doctor asked me, “Well my dear, what is your G.P.A. in school?” I replied, “A 4.0.” He smiled and replied, “Well obviously you are just nervous and stressed from all of the school work that you are doing!” Yeah not convinced but…okay. I let it go. The summer before my senior year of high school I had my first “scary” symptoms. My family had just moved to Texas, and we were still living in a motel. I stood up to pull up my pants, and bright red drops of blood were on the floor. I didn’t immediately panic, thinking that it must be my period. Well, it wasn’t. I told my mom and dad, and they immediately blamed it on the fact that we had been traveling, eating a ton of fast food, and not to worry too much about it. Three days later it went away, and I didn’t think about the incident again until almost a year later. My senior year of high school had been going great…until February, that is. I became so incredibly tired…every day. I slept and slept and slept, but I never felt refreshed. I had no energy. I went from 130 pounds to 114 pounds; my hair started falling out and really thinned. As soon as I would come home from school, I would rush to my room to sleep…sleep became the only thing that I really cared about. I was miserable, and yet I was too tired to even be miserable enough to really complain…I just focused on my schoolwork and just getting through my senior year. Surely this would go away, and things would get better, right? Wrong. The summer before my freshman year of college was awful. I kept on losing weight, my hair kept falling out, I had ulcers in my mouth, was experiencing abdominal pain, red pimple like bumps appeared on my legs. I thought that I was having an allergic reaction to something. In spite of it all, I was so excited about going to the University of Florida that I ignored my symptoms and began college. From there, things steadily got worse. Every time I ate I had diarrhea and rectal bleeding. My legs were covered in unsightly spots. Having to wear pants in 95 degree heat really stinks. My hair was thin, I was pale, I was in pain, and I was all alone. My parents still lived in Texas, and I was in Florida with no car, no immediate family. I went to the ER at UF, hoping to find some relief. When I told the ER docs that I was experiencing rectal bleeding, they gave me that look like they didn’t believe a word I was saying. They did a test, and wow, low and behold…I wasn’t lying after all. After multiple CT scans, an MRI, and doses and doses of morphine, they sent me home. To this day I have no idea how I got home, I left the hospital at 3 am totally drugged. I woke up naked in a puddle of sweat on the bathroom floor in my dorm room the next day. So far my college experience had been amazing. I was referred to a gastroenterologist, who later diagnosed me with Ulcerative colitis – proctitis in this case. I was put on oral Asacol tablets, which really didn’t do much to alleviate my symptoms, and went home for a year to recover at home. I couldn’t really catch up with school after I had missed so much. My symptoms were never under control and I had about 5 flares a year on the oral Asacol. In 2008, while living in Norway, I continued having UC flares. I took my medication, but it didn’t seem to be working. I had another colonoscopy in 2009 in Norway, without any sedation (I figure if I survived that, childbirth will be a cinch someday). I cried the entire time and cursed my Norwegian doc under my breath and probably left nail marks in my nurse’s hand…or broke her hand. At that point, I still had ulcerative proctitis and he prescribed mesalamine (asacol) suppositories. I should be thrilled, I only had UC up 6 inches of my colon, he told me. Amazing how little inflammation you need to make you feel positively rotten. I felt better on those to a point…but they burned something awful so I stopped taking them. I went cold turkey on all of my meds for a year, and let me tell you that was a biiig mistake. Now I am in nursing school back in the US, and as I went cold turkey on my meds, it’s been no walk in the park. I’ve pretty much started all of my treatments from scratch with my new gastroenterologist, had another colonoscopy in May and now my colitis has spread to my sigmoid colon as well…so take your meds UC people! I’m now on Rowasa enemas, a form of mesalamine, and they haven’t worked. I’ve been taking my meds religiously, getting enough sleep, not staying out late, basically behaving like a 50 year old woman and I still am not in remission and am experiencing symptoms…this time with extreme abdominal distention (a new symptom), bleeding, going to the bathroom 6-12 times a day, passing out from pain, dehydration, and blood loss, which has landed me in the ER twice this spring. The only relief I’ve ever had has been on corticosteroids. I was only on them for a brief period, but that during that period I was able to feel how it must feel to people when they are in remission, with no symptoms. It was the most wonderful 3 days I had experienced in a long time! I could eat whatever I wanted to eat, I had tons of energy, I was so productive, I felt alive, vibrant, like I really am 22 years old. Unfortunately as a result of my issues with UC, I was forced to withdraw from school to avoid failing a second time. This was incredibly difficult for me as I was number 1 in my class. I was so ill that I couldn’t go to the award ceremony to receive my nursing award! So many of my holidays have been spent in the bathroom, so many plans of mine have been cancelled, so many dreams of mine have been put on hold. It’s hard not to get down in the dumps about how much life I am really missing out on. The only thing that keeps me going is my faith…faith in God, my church family, and support from my family and friends. I met another lady at my church that has UC as well, and just being able to talk to her about it has been such a comfort to me! So I suggest talking to others that are experiencing what you are. I also have hope that things will improve and get better for me even though I just feel like curling up in a ball and crying…and just remember not to give up on your goals and dreams when some adversity like UC hits you, even if it takes you longer than the average bear to accomplish them. I hope and pray that I will be able to go back to school this fall and will be able to give others some great medical care for a change, instead of always being the patient.
My entire life I have had stomach issues. I went and saw the doctor numerous times for my bouts of nausea and vomiting. “She’s just more susceptible to catching stomach viruses, that’s all.” When I was 16, I had missed so much school from stomach pain and these “bugs” that I went to the doctor thinking that something more serious must be going on. My doctor asked me, “Well my dear, what is your G.P.A. in school?” I replied, “A 4.0.” He smiled and replied, “Well obviously you are just nervous and stressed from all of the school work that you are doing!” Yeah not convinced but…okay. I let it go.
The summer before my senior year of high school I had my first “scary” symptoms. My family had just moved to Texas, and we were still living in a motel. I stood up to pull up my pants, and bright red drops of blood were on the floor. I didn’t immediately panic, thinking that it must be my period. Well, it wasn’t. I told my mom and dad, and they immediately blamed it on the fact that we had been traveling, eating a ton of fast food, and not to worry too much about it. Three days later it went away, and I didn’t think about the incident again until almost a year later.
My senior year of high school had been going great…until February, that is. I became so incredibly tired…every day. I slept and slept and slept, but I never felt refreshed. I had no energy. I went from 130 pounds to 114 pounds; my hair started falling out and really thinned. As soon as I would come home from school, I would rush to my room to sleep…sleep became the only thing that I really cared about. I was miserable, and yet I was too tired to even be miserable enough to really complain…I just focused on my schoolwork and just getting through my senior year. Surely this would go away, and things would get better, right?
Wrong. The summer before my freshman year of college was awful. I kept on losing weight, my hair kept falling out, I had ulcers in my mouth, was experiencing abdominal pain, red pimple like bumps appeared on my legs. I thought that I was having an allergic reaction to something. In spite of it all, I was so excited about going to the University of Florida that I ignored my symptoms and began college.
From there, things steadily got worse. Every time I ate I had diarrhea and rectal bleeding. My legs were covered in unsightly spots. Having to wear pants in 95 degree heat really stinks. My hair was thin, I was pale, I was in pain, and I was all alone. My parents still lived in Texas, and I was in Florida with no car, no immediate family. I went to the ER at UF, hoping to find some relief. When I told the ER docs that I was experiencing rectal bleeding, they gave me that look like they didn’t believe a word I was saying. They did a test, and wow, low and behold…I wasn’t lying after all. After multiple CT scans, an MRI, and doses and doses of morphine, they sent me home. To this day I have no idea how I got home, I left the hospital at 3 am totally drugged. I woke up naked in a puddle of sweat on the bathroom floor in my dorm room the next day. So far my college experience had been amazing.
I was referred to a gastroenterologist, who later diagnosed me with Ulcerative colitis – proctitis in this case. I was put on oral Asacol tablets, which really didn’t do much to alleviate my symptoms, and went home for a year to recover at home. I couldn’t really catch up with school after I had missed so much. My symptoms were never under control and I had about 5 flares a year on the oral Asacol.
In 2008, while living in Norway, I continued having UC flares. I took my medication, but it didn’t seem to be working. I had another colonoscopy in 2009 in Norway, without any sedation (I figure if I survived that, childbirth will be a cinch someday). I cried the entire time and cursed my Norwegian doc under my breath and probably left nail marks in my nurse’s hand…or broke her hand. At that point, I still had ulcerative proctitis and he prescribed mesalamine (asacol) suppositories. I should be thrilled, I only had UC up 6 inches of my colon, he told me. Amazing how little inflammation you need to make you feel positively rotten. I felt better on those to a point…but they burned something awful so I stopped taking them. I went cold turkey on all of my meds for a year, and let me tell you that was a biiig mistake.
Now I am in nursing school back in the US, and as I went cold turkey on my meds, it’s been no walk in the park. I’ve pretty much started all of my treatments from scratch with my new gastroenterologist, had another colonoscopy in May and now my colitis has spread to my sigmoid colon as well…so take your meds UC people! I’m now on Rowasa enemas, a form of mesalamine, and they haven’t worked. I’ve been taking my meds religiously, getting enough sleep, not staying out late, basically behaving like a 50 year old woman and I still am not in remission and am experiencing symptoms…this time with extreme abdominal distention (a new symptom), bleeding, going to the bathroom 6-12 times a day, passing out from pain, dehydration, and blood loss, which has landed me in the ER twice this spring. The only relief I’ve ever had has been on corticosteroids. I was only on them for a brief period, but that during that period I was able to feel how it must feel to people when they are in remission, with no symptoms. It was the most wonderful 3 days I had experienced in a long time! I could eat whatever I wanted to eat, I had tons of energy, I was so productive, I felt alive, vibrant, like I really am 22 years old.
Unfortunately as a result of my issues with UC, I was forced to withdraw from school to avoid failing a second time. This was incredibly difficult for me as I was number 1 in my class. I was so ill that I couldn’t go to the award ceremony to receive my nursing award! So many of my holidays have been spent in the bathroom, so many plans of mine have been cancelled, so many dreams of mine have been put on hold. It’s hard not to get down in the dumps about how much life I am really missing out on. The only thing that keeps me going is my faith…faith in God, my church family, and support from my family and friends. I met another lady at my church that has UC as well, and just being able to talk to her about it has been such a comfort to me! So I suggest talking to others that are experiencing what you are. I also have hope that things will improve and get better for me even though I just feel like curling up in a ball and crying…and just remember not to give up on your goals and dreams when some adversity like UC hits you, even if it takes you longer than the average bear to accomplish them. I hope and pray that I will be able to go back to school this fall and will be able to give others some great medical care for a change, instead of always being the patient.
