Hey all,
I'm a 26/F from the U.S. currently living in the U.K. for graduate school. I was diagnosed with Crohn's colitis day before yesterday. Since then, I've been all over the map as far as emotions go. I've experienced everything from a strange sense of relief to total despair. Right now I'm despairing and hope I can find some support or at least kind commiseration here.
My story in brief: Started having symptoms about 2 years ago when I was still living in the States. From what I've read here and elsewhere, my symptoms were not as severe as many, and therefore, easier to dismiss as mere "stress". I would have D 5 times a day and only once experienced blood once. A combination of denial and misdiagnosis led to the delayed diagnosis. In the end, I saw 5 docs on 2 continents and 3 countries, all of them dismissed my symptoms as IBS, stress, stomach flu, etc. Anyways, had my first real "flare" in August while I was living with my boyfriend in Asia. Super high fevers, D over and above my "normal" daily D, vomiting, etc. Lasted for two weeks. Then it happened again in January. In between I was barely functional, super weak, missing classes, spending all day in bed. I didn't know if I was dying of cancer or just lazy and depressed. My self-esteem plummeted because everybody else I knew from grad school was networking, publishing, getting cool jobs, and I could barely attend lectures. I made few friends from grad school because I was almost never there, and when I was there I was so embarrassed about missing so much I kept to myself. I was worried that all of my professors thought I was a slacker student or some kind of hypochondriac and that all of my fellow students thought so too.
So fast-forward to the last few months. Have gotten sicker. Got a blood test at the school health centre and it revealed I was anemic and had an inflammation somewhere in my body. The docs prescribed antibiotics, that made things worse. Finally got into see a specialist who dismissed my symptoms as IBS but then decided I should probably have the dreaded colonoscopy just in case. I put this off as long as I could, mortified by the idea. Finally, I relented and scheduled an appointment. That about brings us up to speed. Because I don't know anyone here, I went alone.
In my still-groggy state, the doc told me i had a patchy colitis throughout much of my colon with "rectal sparing". great! guess that's the silver lining. They also said that endoscopically, it looked like Crohn's colitis but they are awaiting results of the biopsies they took. Diagnosis on the final report was illeitis/colitis. I was given a prescription for Pentasa oral 4 g/day.
Initially I actually felt ok. Finally I had an answer. I wasn't just lazy or depressed, there was a real reason why I'd been inside so much, tired, sick, depressed and confused about what was wrong with me. My boyfriend (who lives in another country), has spoken with me via google video every night and has been very supportive. But he's far away. I've got nobody here to talk to about it with. I feel so isolated and alone with this news. I have a stream of images of colostomy bags, stomas, remicade infusions, high medical bills, massive amounts of debt, inability to work, steroid side effects, colonoscopies, and hospitalizations running through my head. I am feeling sort of hopeless and diseased. I've told a few friends, but how can they understand? It seems like something people don't want to know about, or think about. Hell, I don't really want to know or think about it. I want to be well, and have energy. So much we take for granted. I really feel dependent on my boyfriend for moral support, but he has a great life and lots of friends where he lives, and I don't want to just be some complainer that burdens others. That's almost as much of a turn off as irritable bowel syndrome itself.
Sorry this was so long. Just feeling desperate and sad and alone with this news. It's so hard to be abroad, in the middle of final exams, with no family or friends to listen or help.
Thanks a lot.
-H
I'm a 26/F from the U.S. currently living in the U.K. for graduate school. I was diagnosed with Crohn's colitis day before yesterday. Since then, I've been all over the map as far as emotions go. I've experienced everything from a strange sense of relief to total despair. Right now I'm despairing and hope I can find some support or at least kind commiseration here.
My story in brief: Started having symptoms about 2 years ago when I was still living in the States. From what I've read here and elsewhere, my symptoms were not as severe as many, and therefore, easier to dismiss as mere "stress". I would have D 5 times a day and only once experienced blood once. A combination of denial and misdiagnosis led to the delayed diagnosis. In the end, I saw 5 docs on 2 continents and 3 countries, all of them dismissed my symptoms as IBS, stress, stomach flu, etc. Anyways, had my first real "flare" in August while I was living with my boyfriend in Asia. Super high fevers, D over and above my "normal" daily D, vomiting, etc. Lasted for two weeks. Then it happened again in January. In between I was barely functional, super weak, missing classes, spending all day in bed. I didn't know if I was dying of cancer or just lazy and depressed. My self-esteem plummeted because everybody else I knew from grad school was networking, publishing, getting cool jobs, and I could barely attend lectures. I made few friends from grad school because I was almost never there, and when I was there I was so embarrassed about missing so much I kept to myself. I was worried that all of my professors thought I was a slacker student or some kind of hypochondriac and that all of my fellow students thought so too.
So fast-forward to the last few months. Have gotten sicker. Got a blood test at the school health centre and it revealed I was anemic and had an inflammation somewhere in my body. The docs prescribed antibiotics, that made things worse. Finally got into see a specialist who dismissed my symptoms as IBS but then decided I should probably have the dreaded colonoscopy just in case. I put this off as long as I could, mortified by the idea. Finally, I relented and scheduled an appointment. That about brings us up to speed. Because I don't know anyone here, I went alone.
In my still-groggy state, the doc told me i had a patchy colitis throughout much of my colon with "rectal sparing". great! guess that's the silver lining. They also said that endoscopically, it looked like Crohn's colitis but they are awaiting results of the biopsies they took. Diagnosis on the final report was illeitis/colitis. I was given a prescription for Pentasa oral 4 g/day.
Initially I actually felt ok. Finally I had an answer. I wasn't just lazy or depressed, there was a real reason why I'd been inside so much, tired, sick, depressed and confused about what was wrong with me. My boyfriend (who lives in another country), has spoken with me via google video every night and has been very supportive. But he's far away. I've got nobody here to talk to about it with. I feel so isolated and alone with this news. I have a stream of images of colostomy bags, stomas, remicade infusions, high medical bills, massive amounts of debt, inability to work, steroid side effects, colonoscopies, and hospitalizations running through my head. I am feeling sort of hopeless and diseased. I've told a few friends, but how can they understand? It seems like something people don't want to know about, or think about. Hell, I don't really want to know or think about it. I want to be well, and have energy. So much we take for granted. I really feel dependent on my boyfriend for moral support, but he has a great life and lots of friends where he lives, and I don't want to just be some complainer that burdens others. That's almost as much of a turn off as irritable bowel syndrome itself.
Sorry this was so long. Just feeling desperate and sad and alone with this news. It's so hard to be abroad, in the middle of final exams, with no family or friends to listen or help.
Thanks a lot.
-H
