- Joined
- Jan 13, 2012
- Messages
- 1
Hello, I'm new to the forum and I'm looking forward to having a place to ameliorate the pain, embarrassment, and isolation of Crohn's.
My story:
The summer before my senior year of college, I went vegan and of course, almost immediately began feeling ill, but because I'm a bullheaded idiot I continued to eat this (to a Crohn's person) poisonous diet. How I kept going like this for another year and a half, I have no idea. I was the thinnest I ever was, and I'm ashamed to admit (as I never have in person) I think part of me liked that. Although I've never been overweight, my mother has always scrutinized my figure, reminding me constantly how much skinnier she was when she was my age. (Of course, overtime, the thinness gave way to disfiguring bloating, but again somehow, I was unable or unwilling to believe there was something wrong with my body so much as there must be something wrong me (i.e. eating too much, exercising too little, etc.).)
On Thanksgiving of 2010, (after ignoring obvious symptoms for a little over a year), I felt a pain in my lower left side I couldn't ignore. It started slowly in the morning (before I'd eaten) and grew worse and worse as the day progressed. By mid-morning it was clear I wasn't going anywhere for the day, and by the afternoon, I was sobbing and screaming in pain alone in my apartment unable to do anything but clutch my side and watch TV. (My apartment building was mostly college students and other young people, so I don't think anyone was around to hear me, or I'd think they'd have knocked or called the cops.) I know it sounds ridiculous now why I wouldn't call a doctor, but I knew because of the holiday I would have to go to the emergency room, which meant I would have to get an ambulance (because I was in no condition to take myself any place) and I didn't think I could afford the bill. Besides, all my Googling told me it was unlikely any vital organs were in danger based on the location of my pain. ::facepalm:: Finally, at 2am, unable to sleep and in excruciating pain for over 12 hours, I gave in and called my parents who live 20 minutes outside of NYC where I live. Although they came to pick me up, they were unwilling to believe I was in enough pain to take me to the hospital (which would have been less than 10 blocks from my apartment). Instead they agreed only to take me to their internist, who had hours the next day on Long Island. Too weak to do anything about the situation, I simply stayed up all night and waited until noon the next day when I finally got to see a doctor.
You'd hope you'd get to catch your breath here, and I'd finally get the medication and dietary advice I need, but alas I wouldn't be diagnosed for another 6 months and wouldn't be prescribed anti-inflammatories for more than a year.
How did this happen? My mother insisted on being in the room with me.
NOTE: If you are a doctor or planning to be a doctor and you are reading this, GET THE PARENTS OUT OF THE ROOM. Sometimes, “well-intentioned” can turn into “wishful thinking,” especially if the parent and child haven't been living together for quite some time. (Christ, I was 22 there was no reason for her to be there.)
I know, I know, it sounds weak, and I'm certainly somewhat to blame for being so shy and stubborn about the COMPLETELY OBVIOUS DIARRHEA (which implied so little absorption it looked like I had simply chewed up my food and spat it in the toilet), and why I didn't put 2 and 2 together about IT ALWAYS HURTING AFTER I ATE, ALWAYS (even quite sometime before I went vegan, although that horrible diet definitely accelerated the illness). But honestly, it wouldn't have even occurred to me to report the pain or bloating though, perhaps because like many women, I expected my body to hate me for putting food in it.
So when the doctor asked if I was having any of those Crohn's symptoms, and my mother answered before I could speak (keep in mind, I had been awake for over 24 hours of excruciating pain and as I'm sure many of you sufferers could infer, unable to eat anything (because it would just cause more pain and vomiting)), I found myself unable to articulate that “No, in fact, mother, my poops are just awful. Indeed, just ******* awful.”
So he just drew some blood and sent me home, and I'm sure tested me for all sorts of irrelevant things which came up negative. (How could he have known?)
I went on in pain for a few more hours until what I now know as a blockage passed miraculously in the bathroom, and I went on in thinking that somehow there was just something wrong with me, and not my body.
It should be mentioned now that at the time I was working in a very hostile environment. I dismissed a lot of my symptoms as psychosomatic. I mean, who doesn't feel crappy after eating lunch alone? And who doesn't want to throw up with a creepy boss breathing down their neck? Things were so tense at work I felt uncomfortable taking a day off to see a doctor, especially because my boss always seemed to want gross specifics of illnesses and of course, I felt embarrassed giving them. (To be fair, he was technically a medical doctor, and we were technically working at a hospital, but I won't go into anymore specifics than that.) Eventually, I reported my boss for his inappropriate behaviors, which couldn't have gone more disastrously (whole 'nother story), but (at least initially) this resulted in working for a scientist lady who was (as most women in science) actually pretty awesome.
FINALLY, I saw a gastroenterologist, who did blood tests to confirm I had the anti-bodies for Crohn's. But for some reason, at this point she didn't prescribe any medication, just a colonoscopy to further confirm. Because the fates are cruel, the week I was confirmed for Crohn's I was “informed of my termination date” at work. (Really it's a whole 'nother story.) After the colonoscopy, the doctor only prescribed me the probiotic, VSL#3. My insurance didn't cover it, and I was about to be uninsured and unemployed, and oh, homeless (my lease was up and I hadn't exactly found the time to find a new place: no small task in NYC). So I bought some over-the-counter probiotics and started to avoid fiber.
My boyfriend helped move me out the day after my colonoscopy. Over the summer, we lived together at his aunt's house in Westchester and I commuted into the city for another month. In July, I was officially unemployed and living in his new apartment with his roommate. These were far from the ideal coalescing environments.
I still wanted to think the more distance I had from the stress, the better I would get, just magically, but of course, a lot the stress WAS the Crohn's. Finally, this fall, when I had my own place and a new job, I was able to admit that I needed the prescription strength probiotic (despite the steep cost). Of course, this improved things, but I still didn't have any consistency in my health and I can never quite tell what foods will (or have for that matter) set me off.
Now, after going to the ER for the 3rd bloody stool in a row, (bleh), I was finally prescribed Pentasa. I hope to be in remission soon. This has been a nightmarishly bad year.
I apologize for this being so long, but there's so much I left out.
I look forward to getting to know you guys.
My story:
The summer before my senior year of college, I went vegan and of course, almost immediately began feeling ill, but because I'm a bullheaded idiot I continued to eat this (to a Crohn's person) poisonous diet. How I kept going like this for another year and a half, I have no idea. I was the thinnest I ever was, and I'm ashamed to admit (as I never have in person) I think part of me liked that. Although I've never been overweight, my mother has always scrutinized my figure, reminding me constantly how much skinnier she was when she was my age. (Of course, overtime, the thinness gave way to disfiguring bloating, but again somehow, I was unable or unwilling to believe there was something wrong with my body so much as there must be something wrong me (i.e. eating too much, exercising too little, etc.).)
On Thanksgiving of 2010, (after ignoring obvious symptoms for a little over a year), I felt a pain in my lower left side I couldn't ignore. It started slowly in the morning (before I'd eaten) and grew worse and worse as the day progressed. By mid-morning it was clear I wasn't going anywhere for the day, and by the afternoon, I was sobbing and screaming in pain alone in my apartment unable to do anything but clutch my side and watch TV. (My apartment building was mostly college students and other young people, so I don't think anyone was around to hear me, or I'd think they'd have knocked or called the cops.) I know it sounds ridiculous now why I wouldn't call a doctor, but I knew because of the holiday I would have to go to the emergency room, which meant I would have to get an ambulance (because I was in no condition to take myself any place) and I didn't think I could afford the bill. Besides, all my Googling told me it was unlikely any vital organs were in danger based on the location of my pain. ::facepalm:: Finally, at 2am, unable to sleep and in excruciating pain for over 12 hours, I gave in and called my parents who live 20 minutes outside of NYC where I live. Although they came to pick me up, they were unwilling to believe I was in enough pain to take me to the hospital (which would have been less than 10 blocks from my apartment). Instead they agreed only to take me to their internist, who had hours the next day on Long Island. Too weak to do anything about the situation, I simply stayed up all night and waited until noon the next day when I finally got to see a doctor.
You'd hope you'd get to catch your breath here, and I'd finally get the medication and dietary advice I need, but alas I wouldn't be diagnosed for another 6 months and wouldn't be prescribed anti-inflammatories for more than a year.
How did this happen? My mother insisted on being in the room with me.
NOTE: If you are a doctor or planning to be a doctor and you are reading this, GET THE PARENTS OUT OF THE ROOM. Sometimes, “well-intentioned” can turn into “wishful thinking,” especially if the parent and child haven't been living together for quite some time. (Christ, I was 22 there was no reason for her to be there.)
I know, I know, it sounds weak, and I'm certainly somewhat to blame for being so shy and stubborn about the COMPLETELY OBVIOUS DIARRHEA (which implied so little absorption it looked like I had simply chewed up my food and spat it in the toilet), and why I didn't put 2 and 2 together about IT ALWAYS HURTING AFTER I ATE, ALWAYS (even quite sometime before I went vegan, although that horrible diet definitely accelerated the illness). But honestly, it wouldn't have even occurred to me to report the pain or bloating though, perhaps because like many women, I expected my body to hate me for putting food in it.
So when the doctor asked if I was having any of those Crohn's symptoms, and my mother answered before I could speak (keep in mind, I had been awake for over 24 hours of excruciating pain and as I'm sure many of you sufferers could infer, unable to eat anything (because it would just cause more pain and vomiting)), I found myself unable to articulate that “No, in fact, mother, my poops are just awful. Indeed, just ******* awful.”
So he just drew some blood and sent me home, and I'm sure tested me for all sorts of irrelevant things which came up negative. (How could he have known?)
I went on in pain for a few more hours until what I now know as a blockage passed miraculously in the bathroom, and I went on in thinking that somehow there was just something wrong with me, and not my body.
It should be mentioned now that at the time I was working in a very hostile environment. I dismissed a lot of my symptoms as psychosomatic. I mean, who doesn't feel crappy after eating lunch alone? And who doesn't want to throw up with a creepy boss breathing down their neck? Things were so tense at work I felt uncomfortable taking a day off to see a doctor, especially because my boss always seemed to want gross specifics of illnesses and of course, I felt embarrassed giving them. (To be fair, he was technically a medical doctor, and we were technically working at a hospital, but I won't go into anymore specifics than that.) Eventually, I reported my boss for his inappropriate behaviors, which couldn't have gone more disastrously (whole 'nother story), but (at least initially) this resulted in working for a scientist lady who was (as most women in science) actually pretty awesome.
FINALLY, I saw a gastroenterologist, who did blood tests to confirm I had the anti-bodies for Crohn's. But for some reason, at this point she didn't prescribe any medication, just a colonoscopy to further confirm. Because the fates are cruel, the week I was confirmed for Crohn's I was “informed of my termination date” at work. (Really it's a whole 'nother story.) After the colonoscopy, the doctor only prescribed me the probiotic, VSL#3. My insurance didn't cover it, and I was about to be uninsured and unemployed, and oh, homeless (my lease was up and I hadn't exactly found the time to find a new place: no small task in NYC). So I bought some over-the-counter probiotics and started to avoid fiber.
My boyfriend helped move me out the day after my colonoscopy. Over the summer, we lived together at his aunt's house in Westchester and I commuted into the city for another month. In July, I was officially unemployed and living in his new apartment with his roommate. These were far from the ideal coalescing environments.
I still wanted to think the more distance I had from the stress, the better I would get, just magically, but of course, a lot the stress WAS the Crohn's. Finally, this fall, when I had my own place and a new job, I was able to admit that I needed the prescription strength probiotic (despite the steep cost). Of course, this improved things, but I still didn't have any consistency in my health and I can never quite tell what foods will (or have for that matter) set me off.
Now, after going to the ER for the 3rd bloody stool in a row, (bleh), I was finally prescribed Pentasa. I hope to be in remission soon. This has been a nightmarishly bad year.
I apologize for this being so long, but there's so much I left out.
I look forward to getting to know you guys.
I hope you feel at home here with us. See ya around.
