So, I'm new to this forum but I've been dealing with symptoms for about eight years now. Here's my story:
The first time I remember have terrible cramping pain was when I was 16. It was a Saturday night and I was with a bunch of friends at someones house when over the course of about twenty minutes I started to have terrible sharp pain in my left upper abdomen. Not wanting to attract any attention to myself I just kind of hunched over in the least uncomfortable position I could find. After about an hour I drove myself home (barely... I was having a lot of trouble sitting up straight) and told my mom about it. She reassured me that it was probably just gas (I was terrified that somehow I had gotten appendicitis and was just weirdly getting pain the complete opposite place), got me a heating pad and sat with me until I fell asleep. The next morning when I woke up, the sharpness of the pain had faded but I was still sore in this really weird way in the exact same place.
Over the next year or so I started having similar episodes about once a month or so. Sometimes they would last a few hours and sometimes they would go on for days at a time. As I've always had a really low pain threshold, I just kept these episodes to myself and dealt with them. After about a year of these reoccurring pain episodes I started to have recurrent episodes of diarrhea and gastritis. The diarrhea wouldn't necessarily be present with EVERY bowel movement that I had, but I would say on average about 50% of my BMs were loose and about 25% total diarrhea. The gastritis episodes would flare up a month or so at a time and then go a way for anywhere from a month to a year. I would get this terrible, acidy pain right in the middle of my abdomen that was much worse at night. I would awake in pain, with chills and sweating, feeling like I was going to vomit (but never did). I would just lay awake all night feeling like I was going to throw up. The only thing that I ever found that took the edge off of the pain was pepto bismol tablets--nothing else would even come close to touching it.
Right around the time I went off to college (about two years after this all started happening) I started to notice that my symptoms would get worse with certain types of food. Oddly enough, basil seems to be the clearest food trigger I've identified, and there are several restaurants in my home town that would make me sick every time I went there. At college, the bouts of abdominal pain (which were still almost always in my upper left abdomen and now almost always accompanied by diarrhea) and diarrhea were happening at most a couple of times a week and at the least about once a month. I just assumed that any doctor I went to would think I was just wining so I just kind of dealt with things and went on with my life (I've developed the ability to be in tremendous pain without anyone knowing).
During my sophomore year of college the frequency of these events increased and I started losing weight without trying (I'm 5'8" and I was about 140 lbs when I started college, by the middle of my sophomore year I was at 130). The diarrhea became increasingly persistent--even when I wasn't having any significant abdominal pain. I also started occasionally having episodes in which I would have significant lower abdomen cramping and expected to have an episode of diarrhea, but I would only produce a bunch of gas, a very small amount of loose stool and a fair amount of mucus (not really sure what the normal size of a bowel movement that is purely mucus is...). At one point the my abdominal pain flared up so bad that I collapsed in an elevator at school--luckily no one was there with me, so I was able to collect myself before I had to get out. Eventually, I decided that things were not normal and talked to my primary care doctor about things. Not wanting to over dramaticize things, in retrospect I probably downplayed my symptoms. Nevertheless, my PCP was great. He immediately collected a stool sample and got me a referral to a GI doctor. The GI doctor seemed really nice, but in retrospect I don't really think he was taking me seriously. Nevertheless, he did order a colonoscopy. Unfortunately, it all came back normal and I was handed the awesome diagnosis of IBS. Awesome.
I headed his recommendations to increase the fiber in my diet (which didn't really change anything except for increase the volume of stool I was passing every day) and to avoid stimulants like caffeine. I now, more than ever, felt like I was just making a big fuss out of nothing, so I just dealt with the flare ups as they would come and go. Over the next couple of years, generally my symptoms would get worse for a couple months at a time and then go away just long enough for me to think this whole thing was over, when, of course, they would come back. Arnd actually, for about two years or so I think things actually did kind of get a little better--I was only having loose stools/diarrhea about one week out of the month and the episodes of abdominal pain/mucusy stools happened only every couple of months.
Unfortunately, this didn't last too long. About a year after I graduate from college, my symptoms returned in full force--the diarrhea, the pain, the mucusy stools--for about an entire month. During this month, I also was experiencing pretty much nonstop gastritis (or what I thought was gastritis). The painful acidy/stabbing pain in my upper abdomen was present pretty much every night, accompanied by the feeling that I was going to throw up. I was sleep deprived, I felt like crap, my stomach felt like it had had paint thinner in it... so I went to my PCP again (I had moved states after college, so this was a new PCP). This PCP however treated my terribly, she clearly thought it was all in my head and thought I was just homesick--she suggested that I meditate, but did agree to do basic bloodwork to check my liver function. The only thing that returned abnormal was my serum lipase (which was about twice as high as normal, but not terribly bad). She agreed that maybe they should keep an eye on my blood work to make sure that the levels return to normal. About two weeks after that, the worst of my symptoms seemed to be subsiding, and the diarrhea/LUQ abdominal pain/mucusy stool episodes seemed to be calming down a bit as well. When I went back four weeks later my serum lipase returned to normal. After this flare up, things remained relatively uneventful (just the usual diarrhea/abd pain/etc) for about six months, at which point I started to see traces of bright red blood on toilet paper after having a BM.
I really didn't think much of it when it started, but for the last year and a half or so it has persisted off an on. I would say that the small trace amounts are present at least a couple of times a week, and are often accompanied by painful BMs if my stool isn't super loose. On the few occasions that I have actually been constipated, it can be quite painful. About six months after I started noticing the blood, I had a particularly bad flair up of abdominal pain with mucus and very little stool. After one particularly bad episode, there was actually quite a bit of blood in the toilet--up until that point I'd never seen it anywhere else aside from the toilet paper. Since then, I've had one other episode that bad, but I've also increasingly started to notice streaks of blood on the stool, and I would say that while the amount of blood is still very small, it is increasing. Also, I'd like to note that I am 100% sure this is not just my period... since getting an ovarian cyst the size of a grapefruit when I was 13, I've been on continuous birth control, only taking the sugar pills 2-3 times a year (as per my gyn's instructions).
So that brings me to where I am now. I haven't ever seen a PCP (now on different insurance, so I'll be seeing a new PCP this time, thank god) about the blood, and have kind of gotten to the point (after a year and a half of this happening off and on for a couple of months at a time) that I think I should probably go back and give it another shot with a different doctor.
After doing some research on other symptoms of Crohn's and perusing this website I've also realized I've also had the following symptoms during the course of my problems:
-Little cuts/sores/ulcers that spontaneously occur at the corners of my mouth (angular somatitis maybe?). I get these at least 5 or 6 times a year (sometimes just one side and sometimes both), and while they aren't painful all the time, they make it quite difficult for my to open my mouth all the way and they are pretty gross looking.
-Cold sores: two years ago, after getting more than 15 cold sores in a 10 month period, I was put on the antiviral medicine valacyclovir. These seemed to have worked for the most part, as I now only get one or two a year.
-Tongue sores: I get these really, really annoying sores on my tongue that are super painful. Sometimes they are right on the tip and it looks like a big white inflamed tastebud is causing the problems. Sometimes they are on the side of my tongue, in which case they are generally bigger and just kind of swollen looking.
-Other mouth sores: I get small annoying sores on the inside of my lips and the sides of my mouth every couple of months or so.
-Red eyes: about three months ago I had to stop wearing contacts because my eyes were always bloodshot, dry and inflamed. Not wearing contacts seems to have helped a bit, but my eyes are definitely still redder than usual and are super sensitive to wearing contacts for longer than a few hours.
-Anal leakage: despite the abdominal pain, I think this symptom is the worst. It doesn't seem to correlate with the types of bowel movements I am having, and it doesn't happen all the time, but when it does, its gross and makes me feel like I've totally lost it. I'm 26... I shouldn't be having problems with anal leakage. While volume-wise it's not very much, it makes things very itchy and inflamed down there. I usually just dry things up and put some vaseline on the irritated skin and hope for the best.
So that's my story. I'm kind of at my wits end. For a couple of years after my first run in with a GI doctor, I kind of bought the idea that I might just have IBS, but I'm kind of at a place now where it just doesn't seem to all add up--and if there is something wrong, I'd really like to take care of it to prevent things from getting worse in the future.
I know this was really long, but I don't really know who else to turn to, and I'm getting more and more convinced that something might be up. Any advice from anyone would be greatly appreciated! Thanks so much for reading all of this!
The first time I remember have terrible cramping pain was when I was 16. It was a Saturday night and I was with a bunch of friends at someones house when over the course of about twenty minutes I started to have terrible sharp pain in my left upper abdomen. Not wanting to attract any attention to myself I just kind of hunched over in the least uncomfortable position I could find. After about an hour I drove myself home (barely... I was having a lot of trouble sitting up straight) and told my mom about it. She reassured me that it was probably just gas (I was terrified that somehow I had gotten appendicitis and was just weirdly getting pain the complete opposite place), got me a heating pad and sat with me until I fell asleep. The next morning when I woke up, the sharpness of the pain had faded but I was still sore in this really weird way in the exact same place.
Over the next year or so I started having similar episodes about once a month or so. Sometimes they would last a few hours and sometimes they would go on for days at a time. As I've always had a really low pain threshold, I just kept these episodes to myself and dealt with them. After about a year of these reoccurring pain episodes I started to have recurrent episodes of diarrhea and gastritis. The diarrhea wouldn't necessarily be present with EVERY bowel movement that I had, but I would say on average about 50% of my BMs were loose and about 25% total diarrhea. The gastritis episodes would flare up a month or so at a time and then go a way for anywhere from a month to a year. I would get this terrible, acidy pain right in the middle of my abdomen that was much worse at night. I would awake in pain, with chills and sweating, feeling like I was going to vomit (but never did). I would just lay awake all night feeling like I was going to throw up. The only thing that I ever found that took the edge off of the pain was pepto bismol tablets--nothing else would even come close to touching it.
Right around the time I went off to college (about two years after this all started happening) I started to notice that my symptoms would get worse with certain types of food. Oddly enough, basil seems to be the clearest food trigger I've identified, and there are several restaurants in my home town that would make me sick every time I went there. At college, the bouts of abdominal pain (which were still almost always in my upper left abdomen and now almost always accompanied by diarrhea) and diarrhea were happening at most a couple of times a week and at the least about once a month. I just assumed that any doctor I went to would think I was just wining so I just kind of dealt with things and went on with my life (I've developed the ability to be in tremendous pain without anyone knowing).
During my sophomore year of college the frequency of these events increased and I started losing weight without trying (I'm 5'8" and I was about 140 lbs when I started college, by the middle of my sophomore year I was at 130). The diarrhea became increasingly persistent--even when I wasn't having any significant abdominal pain. I also started occasionally having episodes in which I would have significant lower abdomen cramping and expected to have an episode of diarrhea, but I would only produce a bunch of gas, a very small amount of loose stool and a fair amount of mucus (not really sure what the normal size of a bowel movement that is purely mucus is...). At one point the my abdominal pain flared up so bad that I collapsed in an elevator at school--luckily no one was there with me, so I was able to collect myself before I had to get out. Eventually, I decided that things were not normal and talked to my primary care doctor about things. Not wanting to over dramaticize things, in retrospect I probably downplayed my symptoms. Nevertheless, my PCP was great. He immediately collected a stool sample and got me a referral to a GI doctor. The GI doctor seemed really nice, but in retrospect I don't really think he was taking me seriously. Nevertheless, he did order a colonoscopy. Unfortunately, it all came back normal and I was handed the awesome diagnosis of IBS. Awesome.
I headed his recommendations to increase the fiber in my diet (which didn't really change anything except for increase the volume of stool I was passing every day) and to avoid stimulants like caffeine. I now, more than ever, felt like I was just making a big fuss out of nothing, so I just dealt with the flare ups as they would come and go. Over the next couple of years, generally my symptoms would get worse for a couple months at a time and then go away just long enough for me to think this whole thing was over, when, of course, they would come back. Arnd actually, for about two years or so I think things actually did kind of get a little better--I was only having loose stools/diarrhea about one week out of the month and the episodes of abdominal pain/mucusy stools happened only every couple of months.
Unfortunately, this didn't last too long. About a year after I graduate from college, my symptoms returned in full force--the diarrhea, the pain, the mucusy stools--for about an entire month. During this month, I also was experiencing pretty much nonstop gastritis (or what I thought was gastritis). The painful acidy/stabbing pain in my upper abdomen was present pretty much every night, accompanied by the feeling that I was going to throw up. I was sleep deprived, I felt like crap, my stomach felt like it had had paint thinner in it... so I went to my PCP again (I had moved states after college, so this was a new PCP). This PCP however treated my terribly, she clearly thought it was all in my head and thought I was just homesick--she suggested that I meditate, but did agree to do basic bloodwork to check my liver function. The only thing that returned abnormal was my serum lipase (which was about twice as high as normal, but not terribly bad). She agreed that maybe they should keep an eye on my blood work to make sure that the levels return to normal. About two weeks after that, the worst of my symptoms seemed to be subsiding, and the diarrhea/LUQ abdominal pain/mucusy stool episodes seemed to be calming down a bit as well. When I went back four weeks later my serum lipase returned to normal. After this flare up, things remained relatively uneventful (just the usual diarrhea/abd pain/etc) for about six months, at which point I started to see traces of bright red blood on toilet paper after having a BM.
I really didn't think much of it when it started, but for the last year and a half or so it has persisted off an on. I would say that the small trace amounts are present at least a couple of times a week, and are often accompanied by painful BMs if my stool isn't super loose. On the few occasions that I have actually been constipated, it can be quite painful. About six months after I started noticing the blood, I had a particularly bad flair up of abdominal pain with mucus and very little stool. After one particularly bad episode, there was actually quite a bit of blood in the toilet--up until that point I'd never seen it anywhere else aside from the toilet paper. Since then, I've had one other episode that bad, but I've also increasingly started to notice streaks of blood on the stool, and I would say that while the amount of blood is still very small, it is increasing. Also, I'd like to note that I am 100% sure this is not just my period... since getting an ovarian cyst the size of a grapefruit when I was 13, I've been on continuous birth control, only taking the sugar pills 2-3 times a year (as per my gyn's instructions).
So that brings me to where I am now. I haven't ever seen a PCP (now on different insurance, so I'll be seeing a new PCP this time, thank god) about the blood, and have kind of gotten to the point (after a year and a half of this happening off and on for a couple of months at a time) that I think I should probably go back and give it another shot with a different doctor.
After doing some research on other symptoms of Crohn's and perusing this website I've also realized I've also had the following symptoms during the course of my problems:
-Little cuts/sores/ulcers that spontaneously occur at the corners of my mouth (angular somatitis maybe?). I get these at least 5 or 6 times a year (sometimes just one side and sometimes both), and while they aren't painful all the time, they make it quite difficult for my to open my mouth all the way and they are pretty gross looking.
-Cold sores: two years ago, after getting more than 15 cold sores in a 10 month period, I was put on the antiviral medicine valacyclovir. These seemed to have worked for the most part, as I now only get one or two a year.
-Tongue sores: I get these really, really annoying sores on my tongue that are super painful. Sometimes they are right on the tip and it looks like a big white inflamed tastebud is causing the problems. Sometimes they are on the side of my tongue, in which case they are generally bigger and just kind of swollen looking.
-Other mouth sores: I get small annoying sores on the inside of my lips and the sides of my mouth every couple of months or so.
-Red eyes: about three months ago I had to stop wearing contacts because my eyes were always bloodshot, dry and inflamed. Not wearing contacts seems to have helped a bit, but my eyes are definitely still redder than usual and are super sensitive to wearing contacts for longer than a few hours.
-Anal leakage: despite the abdominal pain, I think this symptom is the worst. It doesn't seem to correlate with the types of bowel movements I am having, and it doesn't happen all the time, but when it does, its gross and makes me feel like I've totally lost it. I'm 26... I shouldn't be having problems with anal leakage. While volume-wise it's not very much, it makes things very itchy and inflamed down there. I usually just dry things up and put some vaseline on the irritated skin and hope for the best.
So that's my story. I'm kind of at my wits end. For a couple of years after my first run in with a GI doctor, I kind of bought the idea that I might just have IBS, but I'm kind of at a place now where it just doesn't seem to all add up--and if there is something wrong, I'd really like to take care of it to prevent things from getting worse in the future.
I know this was really long, but I don't really know who else to turn to, and I'm getting more and more convinced that something might be up. Any advice from anyone would be greatly appreciated! Thanks so much for reading all of this!
) or anal fissure (where you tear when you pass stool). 
