I've been lurking/surfing this community for a few years now, and thought it was finally time to introduce myself and say "Hi!". I love how funny and supportive y'all are, and and am happy I'm finally getting involved. Yesteday I was feeling yucky (just had a colonoscopy) and sulky and read the funny pictures and rude comments posts and it made me smile and feel better. :smile:
My (long) story: I started having diarrhea in college, but did the usual "it's dairy! and fatty food! no, it's stress! nope, wrong again, it must be citrus fruit! and apples! ok...it seems to be anything and everything I eat..." for a few years, all the while fighting constant anemia, infections, exhaustion and these horrible canker sores that seemed to take over and be constantly there. I couldn't imagine how one person could be chewing so terribly that they kept biting their cheek/lip/tongue so often haha! At my worst, I was terrified to leave my room. I knew where all the bathrooms on campus were, and the most crowded times for each (we had mostly shared bathrooms. joy.) and was constantly missing class and almost having accidents (ok...having accidents a few times.. :/). I thought this was normal. I was exhausted and depressed and thought maybe counseling might help. They said I was depressed (I'm sure I was also that) and put me on an SSRI which, as a side effect, caused diarrhea! ha. Finally, having dropped 15+ lbs, and had enough of racing to the bathroom I saw a PCP between my junior and senior year of college, who said I had IBS-D and depression and needed to eat more fiber. (hysterical, considering I was a vegetarian at the time and even that was limited because of all the foods that gave me diarrhea..but w/e.) I was also anemic (surprise, surprise) and was given iron supplements (no, my iron was never actually checked, and no, my B12 was never checked).
Life moved on. I graduated. I moved back home and my symptoms started to get better so I thought it must have been the bad dorm food and stress. I decided I wanted to be a doctor, started taking classes at home, then moved to Boston to take even more classes and get a job at a hospital. 2009 rolls around and my symptoms start to come back--diarrhea 5-8 times a day, mostly with a 15min gurgle warning. I'm getting a cold every month, I'm exhausted, and I think (again) that it must be something I'm eating. I don't see a doctor, given my family's (no one in my family goes to the doctor. it's a sign of weakness.) and my history (fiber and iron for diarrhea. sure.) until my jaw locks and I really can't eat. I get a rush appt with someone in Boston, he checks me out for my jaw and says I have a sinus infection that must have travelled and gives me some Abx. My jaw unlocks a week later, and I see him for a f/u, mentioning that I've had diarrhea for most of the past 3-4 years and I'm tired a lot. He sends me to the lab to get lots of testing and I'm anemic again (this time he got a b12!) and my Fe and B12 are low, so I get oral of both, and a bunch of bacterial GI tests done, as well as a GI referral once all those come back neg. I see said GI specialist. He sends me for tests (stool, labs, etc) and I have steatorrhea (no shit. I could have told him it was fatty. and gross) and that I should take claritin everyday. (??).
Not surprisingly, claritin does not help. Diarrhea stays, I move to complete my master's degree, then get into med school (yay!) and diarrhea gets better! (relatively. instead of 4-8 times a day w/urgency, its 2x day non urgent with the occasional week of 6-8X with urgency) but its better! mouth sores are still there, anemia is off and on, b-12 is still low despite mega oral supplement. My ob/gyn notices an anal ulcer (awesome!) which I'd felt before (ouchie. very ouchie.) but never looked at/for.
My fiance urges me to see dr. again, and I start to think hey, this is going to be a big problem come clerkships--you can't really be in the middle of a surgical case, holding a retractor (or a light. we don't do much as med students) and say hey! gotta run! and drop said retractor/light without notice to go to the bathroom. Or be in the middle of step 1 (the biggest, day long, stressful exam of our career) and have to be in the bathroom for an hour. So I get a PCP, who sends me to a GI specialist. We'll call him Dr. P. Dr. P sees me for 5 min, asks me if I'm lactose intolerant (maybe I am?) and if anyone in my family has colon cancer (yes) and tells me I need a colonoscopy. Which I sort of guessed anyway. So I get one! It shows focal ileitis and 1-2 small ulcers in my terminal ileum. Which is weird, because a. I'm in remission! my symptoms, compared to my worst, are sooo much better. By and large I have urgent explosive diarrhea only 5ish times a month (though my normal BMs dissolve once they hit the water...so still not "normal") and b. I don't take NSAIDS(the usual reason you only see 1 or 2 lone ulcers in the SI). Pathology report comes back and says "granulation tissue consistent with ulceration." so, no granuloMA. Dr. P doesnt get back to me. for 4 months. I call his office 3-5 times (hey, I'm busy too) and never get a call back. His nurse tells me that if Dr. P needs to get in touch with me, HE will call ME. I tell PCP this after month 4 and magically he calls me the next day saying he wants to get a MRE before putting me on a 5-ASA because he thinks it's crohns (which fiancee and I, both being med students/doctor, had already suspected) but doesn't want to be too agressive. Which is fine by me, I'm not very aggressive.
Fast forward 1 month later--it's a Tuesday, I've been having some nausea, dropped about 15lbs (which is still weird, because like I said, I'm in remission! diarrhea has not been that bad lately! mouth sores went away a few months ago! b12 anemia is still there though, and I'm getting IM shots) have had some tarry/bloody stools lately, and more anal ulcers than normal. I decide to take a nap and I'll feel better after. I sleep for 2 hrs, wake up and feel worse, go back to sleep, wake up and feel MUCH worse. My belly hurts mid epigastric (above belly button) and I'm now vomiting/having massive diarrhea. Belly pain moves to RLQ, and has rebound tenderness. Both of our med student brains are now on alarm--RLQ and rebound=appendicitis. I, vomiting and diarrhea-ing go the ER. (which is fun and consists of me passing out in the elevator, lobby of our building, and cab whilst ****-ing my pants and vomiting in a trashbag.) In the ER I'm given blessed zofran and dilaudid, and a lot of tests. My WBC count is high, I'm anemic, my iron is low, by b12 is low, and my BP is in the toilet (80/40). I have an u/s which is normal, a CT with contrast which shows lymphadenopathy and stranding in my ileum/Rcolon, but otherwise normal. I'm admitted, started on prednisone for a Crohns flare (I guess I have crohn's now? that's news to us) and mesalamine. Day 3 of hospital visit (day 2 I get mesalamine) my lipase jumps and I have burning, stabbing, epigastric, through the back going to punch someone it hurts so bad pain and voila, I have pancreatitis. (mnemonic for pancreatitis, for any board studiers, is GET SMASHED= G Gallstones, E Ethanol, T Trauma, S Steroids, M Mumps, A Autoimmune(PAN), S Scorpion bites, H Hyperlipidemia(High Calcium, Hypothermia), E ERCP, D Drugs(azathioprine,diuretics). ) So we're guessing it's from my gallbladder (which looks fine on ultrasound) or I'm the .00001% who get it from mesalamine. I'm in the hospital for 6 days, I leave with a crohn's dx and a new GI. New GI (Dr. W), is nice, and immediately orders a dexa scan (apparently we crohnsies usually have osteopenia/osteporosis) and a small bowel follow through (dear god, please let me never ever have to drink that barium AGAIN), an MRCP for pancreatitis, an upper endoscopy, and another colonoscopy! (yay. I LOVE prepping for those, especially since THIS time I get to do unflavored golytely!) I'm tapering my predisone from 40mg IV in hospital to now 10mg 5 weeks later (slowly but surely! I'm getting off! and starting to have some symptoms..
)
So, here's the end. I had the MRCP on saturday and the EGD/Colonoscopy on tuesday and my entire GI tract is 100% healthy. No ulcers whatsoever. No crohns. Dr. W says it's unlikely my prednisone dose took care of it, and now a dx of Crohn's is much less likely. On the bright side, before both I was looking at Imuron as a therapy (scary-ish strong) and now I'm looking at...? No treatment? 5-ASA again? more fiber? (haha, j/k.)
Everyone around me is thrilled with the good news that I'm ulcer free, and don't get me wrong-part of me is also thrilled/ecstatic/excited. But, part of me feels like we're back to square 1. No diagnosis, and no idea what is wrong with me. Which, in my mind, means no symptom control. I'm in relative remission now...but what happens when it gets bad again? Another round of tests and colonoscopy and weeks of misery before it gets handled? I don't have time for that. Can a colonoscopy be normal and still be crohn's? Mild crohn's?
Occam's razor: It seems less likely that I have, unassociated, b12 and fe def anemia, steatorrhea, oral ulcers, anal ulcers, stranding on CT, a "flare" that hospitalizes me (while in remission diarrhea and symptom wise. still weird to me.) and 1 (false?) positive colonoscopy. I have a f/u with Dr. W in a month (his earliest, the day before I take boards and then move 3 days later!) so I guess until then I'm...off of steroids and doing the watching/waiting game. :confused2:
My (long) story: I started having diarrhea in college, but did the usual "it's dairy! and fatty food! no, it's stress! nope, wrong again, it must be citrus fruit! and apples! ok...it seems to be anything and everything I eat..." for a few years, all the while fighting constant anemia, infections, exhaustion and these horrible canker sores that seemed to take over and be constantly there. I couldn't imagine how one person could be chewing so terribly that they kept biting their cheek/lip/tongue so often haha! At my worst, I was terrified to leave my room. I knew where all the bathrooms on campus were, and the most crowded times for each (we had mostly shared bathrooms. joy.) and was constantly missing class and almost having accidents (ok...having accidents a few times.. :/). I thought this was normal. I was exhausted and depressed and thought maybe counseling might help. They said I was depressed (I'm sure I was also that) and put me on an SSRI which, as a side effect, caused diarrhea! ha. Finally, having dropped 15+ lbs, and had enough of racing to the bathroom I saw a PCP between my junior and senior year of college, who said I had IBS-D and depression and needed to eat more fiber. (hysterical, considering I was a vegetarian at the time and even that was limited because of all the foods that gave me diarrhea..but w/e.) I was also anemic (surprise, surprise) and was given iron supplements (no, my iron was never actually checked, and no, my B12 was never checked).
Life moved on. I graduated. I moved back home and my symptoms started to get better so I thought it must have been the bad dorm food and stress. I decided I wanted to be a doctor, started taking classes at home, then moved to Boston to take even more classes and get a job at a hospital. 2009 rolls around and my symptoms start to come back--diarrhea 5-8 times a day, mostly with a 15min gurgle warning. I'm getting a cold every month, I'm exhausted, and I think (again) that it must be something I'm eating. I don't see a doctor, given my family's (no one in my family goes to the doctor. it's a sign of weakness.) and my history (fiber and iron for diarrhea. sure.) until my jaw locks and I really can't eat. I get a rush appt with someone in Boston, he checks me out for my jaw and says I have a sinus infection that must have travelled and gives me some Abx. My jaw unlocks a week later, and I see him for a f/u, mentioning that I've had diarrhea for most of the past 3-4 years and I'm tired a lot. He sends me to the lab to get lots of testing and I'm anemic again (this time he got a b12!) and my Fe and B12 are low, so I get oral of both, and a bunch of bacterial GI tests done, as well as a GI referral once all those come back neg. I see said GI specialist. He sends me for tests (stool, labs, etc) and I have steatorrhea (no shit. I could have told him it was fatty. and gross) and that I should take claritin everyday. (??).
Not surprisingly, claritin does not help. Diarrhea stays, I move to complete my master's degree, then get into med school (yay!) and diarrhea gets better! (relatively. instead of 4-8 times a day w/urgency, its 2x day non urgent with the occasional week of 6-8X with urgency) but its better! mouth sores are still there, anemia is off and on, b-12 is still low despite mega oral supplement. My ob/gyn notices an anal ulcer (awesome!) which I'd felt before (ouchie. very ouchie.) but never looked at/for.
My fiance urges me to see dr. again, and I start to think hey, this is going to be a big problem come clerkships--you can't really be in the middle of a surgical case, holding a retractor (or a light. we don't do much as med students) and say hey! gotta run! and drop said retractor/light without notice to go to the bathroom. Or be in the middle of step 1 (the biggest, day long, stressful exam of our career) and have to be in the bathroom for an hour. So I get a PCP, who sends me to a GI specialist. We'll call him Dr. P. Dr. P sees me for 5 min, asks me if I'm lactose intolerant (maybe I am?) and if anyone in my family has colon cancer (yes) and tells me I need a colonoscopy. Which I sort of guessed anyway. So I get one! It shows focal ileitis and 1-2 small ulcers in my terminal ileum. Which is weird, because a. I'm in remission! my symptoms, compared to my worst, are sooo much better. By and large I have urgent explosive diarrhea only 5ish times a month (though my normal BMs dissolve once they hit the water...so still not "normal") and b. I don't take NSAIDS(the usual reason you only see 1 or 2 lone ulcers in the SI). Pathology report comes back and says "granulation tissue consistent with ulceration." so, no granuloMA. Dr. P doesnt get back to me. for 4 months. I call his office 3-5 times (hey, I'm busy too) and never get a call back. His nurse tells me that if Dr. P needs to get in touch with me, HE will call ME. I tell PCP this after month 4 and magically he calls me the next day saying he wants to get a MRE before putting me on a 5-ASA because he thinks it's crohns (which fiancee and I, both being med students/doctor, had already suspected) but doesn't want to be too agressive. Which is fine by me, I'm not very aggressive.
Fast forward 1 month later--it's a Tuesday, I've been having some nausea, dropped about 15lbs (which is still weird, because like I said, I'm in remission! diarrhea has not been that bad lately! mouth sores went away a few months ago! b12 anemia is still there though, and I'm getting IM shots) have had some tarry/bloody stools lately, and more anal ulcers than normal. I decide to take a nap and I'll feel better after. I sleep for 2 hrs, wake up and feel worse, go back to sleep, wake up and feel MUCH worse. My belly hurts mid epigastric (above belly button) and I'm now vomiting/having massive diarrhea. Belly pain moves to RLQ, and has rebound tenderness. Both of our med student brains are now on alarm--RLQ and rebound=appendicitis. I, vomiting and diarrhea-ing go the ER. (which is fun and consists of me passing out in the elevator, lobby of our building, and cab whilst ****-ing my pants and vomiting in a trashbag.) In the ER I'm given blessed zofran and dilaudid, and a lot of tests. My WBC count is high, I'm anemic, my iron is low, by b12 is low, and my BP is in the toilet (80/40). I have an u/s which is normal, a CT with contrast which shows lymphadenopathy and stranding in my ileum/Rcolon, but otherwise normal. I'm admitted, started on prednisone for a Crohns flare (I guess I have crohn's now? that's news to us) and mesalamine. Day 3 of hospital visit (day 2 I get mesalamine) my lipase jumps and I have burning, stabbing, epigastric, through the back going to punch someone it hurts so bad pain and voila, I have pancreatitis. (mnemonic for pancreatitis, for any board studiers, is GET SMASHED= G Gallstones, E Ethanol, T Trauma, S Steroids, M Mumps, A Autoimmune(PAN), S Scorpion bites, H Hyperlipidemia(High Calcium, Hypothermia), E ERCP, D Drugs(azathioprine,diuretics). ) So we're guessing it's from my gallbladder (which looks fine on ultrasound) or I'm the .00001% who get it from mesalamine. I'm in the hospital for 6 days, I leave with a crohn's dx and a new GI. New GI (Dr. W), is nice, and immediately orders a dexa scan (apparently we crohnsies usually have osteopenia/osteporosis) and a small bowel follow through (dear god, please let me never ever have to drink that barium AGAIN), an MRCP for pancreatitis, an upper endoscopy, and another colonoscopy! (yay. I LOVE prepping for those, especially since THIS time I get to do unflavored golytely!) I'm tapering my predisone from 40mg IV in hospital to now 10mg 5 weeks later (slowly but surely! I'm getting off! and starting to have some symptoms..
)So, here's the end. I had the MRCP on saturday and the EGD/Colonoscopy on tuesday and my entire GI tract is 100% healthy. No ulcers whatsoever. No crohns. Dr. W says it's unlikely my prednisone dose took care of it, and now a dx of Crohn's is much less likely. On the bright side, before both I was looking at Imuron as a therapy (scary-ish strong) and now I'm looking at...? No treatment? 5-ASA again? more fiber? (haha, j/k.)
Everyone around me is thrilled with the good news that I'm ulcer free, and don't get me wrong-part of me is also thrilled/ecstatic/excited. But, part of me feels like we're back to square 1. No diagnosis, and no idea what is wrong with me. Which, in my mind, means no symptom control. I'm in relative remission now...but what happens when it gets bad again? Another round of tests and colonoscopy and weeks of misery before it gets handled? I don't have time for that. Can a colonoscopy be normal and still be crohn's? Mild crohn's?
Occam's razor: It seems less likely that I have, unassociated, b12 and fe def anemia, steatorrhea, oral ulcers, anal ulcers, stranding on CT, a "flare" that hospitalizes me (while in remission diarrhea and symptom wise. still weird to me.) and 1 (false?) positive colonoscopy. I have a f/u with Dr. W in a month (his earliest, the day before I take boards and then move 3 days later!) so I guess until then I'm...off of steroids and doing the watching/waiting game. :confused2:
