Hi. I joined last month after perusing the forum regularly when ill looking for answers. I was finally like, well I'm here often enough- may as well join.
I was diagnosed with crohns (I don't capitalize it on purpose, and I don't call it 'mine') and GERD in the fall of 2004 on turning 18 and entering college. At the time I had somewhere in the neighborhood of 50 bleeding ulcers. Oddly enough, I didn't go to my doctor about pain but because I had blood in my stool...which I only knew to be a sign of cancer. My doctor did not believe me and characterized me as depressed and having difficulty adjusting to going away to college due to the weight loss, poor nutrition and extreme fatigue. The blood kept appearing and when I was home for Thanksgiving I finally just brought my mom into the bathroom to 'show her something'. She was horrified. She started crying and apologizing profusely for not taking me seriously and in to the doctor we went. This time when he said it was depression she said, "No. I've seen it. Something is wrong and I want tests run." And of course they found loads of inflammation.
Fast forward to today. I've been having a flare for about 2-3 years. Not even sure- time flies when you're having fun. There have been periods in the meantime that have been good, relatively speaking, but not without the assistance of my handy-dandy friend Prednisone. My love.
In the past year I started getting mouth sores at the corners of my mouth generally indicating Flare to Come. Even the sores inside my mouth became more elaborate than the usual canker sores I've had all my life; I get sores lining the very edge of my inner lip in almost a line (I've discussed this elsewhere on another thread). Last fall my eyes started getting so dry at night that I would awake throughout the night from a deep sleep due to discomfort and in the morning they'd be swollen (swelling would usually go down relatively quickly, from 15 min to about an hour). This is still happening to a lesser degree and almost never waking me at night anymore. So, on to the next!
I've always had periodic joint pain, especially as a swimmer in highschool. Last 6-9 months have been incredible. I have had days I roll myself out of bed in order to get the momentum necessary to get out of bed without bending my knee(s) (plural depending on the day). My hip gave out about two weeks ago when I stood up from sitting on the couch watching a show. I almost fell over, had a hard time walking for a while and was in quite a bit of pain. My favorite one is this new thing where I wake up in the middle of the night with my whole body aching in torturous pain. Did I mention I'm 25? These bouts don't happen in any predictive manner, or even necessarily on consecutive days. I do notice that the likelihood and severity of my joint pain seems to be an accompaniment to the crohns.
Also my potassium levels are consistently low. As such, I was put on a prescription supplement in the fall during a bad flare. I also took it upon myself to add a magnesium supplement (to properly utilize the potassium I get) and emphasized potassium rich foods in my diet. They re-tested me after that and I had a 3.6 on the scale of 3.6-5.2 for a safe range. They rechecked my potassium levels a little over a month ago and I was low again. My doctor said it was probably due to issues of absorption from the crohns so he put me on a liquid prescription supplement and retested 2 weeks later. Again, I tested at 3.6 so he said I'm good. I'm not so sure. With all of the care I take to eat potassium rich foods in addition to the prescription and taking the magnesium....and my test results from the colonoscopy last Thursday (later noted, sorry for the disorganization, I did this on my phone) not displaying any alarming crohns issues... I just dont know.
So last week, having a TON of nausea, diarrhea (mild to moderate), pain where I get crohns pain, mouth sores and intermittent joint pain I finally called my GI. I insisted that rather than putting me on prednisone and then checking me out after my immune system has been knocked on its ass that he take a look in me first. I had stricturing of the esophagus which he opened up, a hiatal hernia and inflammation in my right colon which he classified as mild. He indicated that I don't need to go on any of the scary Meds given the tour. This was relieving but frustrating. My pain and symptoms don't seem to match what he saw. I have a follow up appointment to discuss it with him this Friday.
I don't know what to do. I am concerned we are missing some third variable that my intestines can appear so mild while everything seems to be going wicked on me. I absolutely positively have crohns, there is no question about that. But I'm really concerned we are missing something. And my sick days are so far gone that I used
a vacation day for my colonoscopy and EGD last week, if that's not the most hysterically ironic thing ever.
So basically, I have no idea what's going on. My fatigue is rampantly out of control and I know I need to be seen. Does anyone have any pointers or ideas? There's so much knowledge among us...anything you may have could help. I appreciate it.
I was diagnosed with crohns (I don't capitalize it on purpose, and I don't call it 'mine') and GERD in the fall of 2004 on turning 18 and entering college. At the time I had somewhere in the neighborhood of 50 bleeding ulcers. Oddly enough, I didn't go to my doctor about pain but because I had blood in my stool...which I only knew to be a sign of cancer. My doctor did not believe me and characterized me as depressed and having difficulty adjusting to going away to college due to the weight loss, poor nutrition and extreme fatigue. The blood kept appearing and when I was home for Thanksgiving I finally just brought my mom into the bathroom to 'show her something'. She was horrified. She started crying and apologizing profusely for not taking me seriously and in to the doctor we went. This time when he said it was depression she said, "No. I've seen it. Something is wrong and I want tests run." And of course they found loads of inflammation.
Fast forward to today. I've been having a flare for about 2-3 years. Not even sure- time flies when you're having fun. There have been periods in the meantime that have been good, relatively speaking, but not without the assistance of my handy-dandy friend Prednisone. My love.
In the past year I started getting mouth sores at the corners of my mouth generally indicating Flare to Come. Even the sores inside my mouth became more elaborate than the usual canker sores I've had all my life; I get sores lining the very edge of my inner lip in almost a line (I've discussed this elsewhere on another thread). Last fall my eyes started getting so dry at night that I would awake throughout the night from a deep sleep due to discomfort and in the morning they'd be swollen (swelling would usually go down relatively quickly, from 15 min to about an hour). This is still happening to a lesser degree and almost never waking me at night anymore. So, on to the next!
I've always had periodic joint pain, especially as a swimmer in highschool. Last 6-9 months have been incredible. I have had days I roll myself out of bed in order to get the momentum necessary to get out of bed without bending my knee(s) (plural depending on the day). My hip gave out about two weeks ago when I stood up from sitting on the couch watching a show. I almost fell over, had a hard time walking for a while and was in quite a bit of pain. My favorite one is this new thing where I wake up in the middle of the night with my whole body aching in torturous pain. Did I mention I'm 25? These bouts don't happen in any predictive manner, or even necessarily on consecutive days. I do notice that the likelihood and severity of my joint pain seems to be an accompaniment to the crohns.
Also my potassium levels are consistently low. As such, I was put on a prescription supplement in the fall during a bad flare. I also took it upon myself to add a magnesium supplement (to properly utilize the potassium I get) and emphasized potassium rich foods in my diet. They re-tested me after that and I had a 3.6 on the scale of 3.6-5.2 for a safe range. They rechecked my potassium levels a little over a month ago and I was low again. My doctor said it was probably due to issues of absorption from the crohns so he put me on a liquid prescription supplement and retested 2 weeks later. Again, I tested at 3.6 so he said I'm good. I'm not so sure. With all of the care I take to eat potassium rich foods in addition to the prescription and taking the magnesium....and my test results from the colonoscopy last Thursday (later noted, sorry for the disorganization, I did this on my phone) not displaying any alarming crohns issues... I just dont know.
So last week, having a TON of nausea, diarrhea (mild to moderate), pain where I get crohns pain, mouth sores and intermittent joint pain I finally called my GI. I insisted that rather than putting me on prednisone and then checking me out after my immune system has been knocked on its ass that he take a look in me first. I had stricturing of the esophagus which he opened up, a hiatal hernia and inflammation in my right colon which he classified as mild. He indicated that I don't need to go on any of the scary Meds given the tour. This was relieving but frustrating. My pain and symptoms don't seem to match what he saw. I have a follow up appointment to discuss it with him this Friday.
I don't know what to do. I am concerned we are missing some third variable that my intestines can appear so mild while everything seems to be going wicked on me. I absolutely positively have crohns, there is no question about that. But I'm really concerned we are missing something. And my sick days are so far gone that I used
a vacation day for my colonoscopy and EGD last week, if that's not the most hysterically ironic thing ever.
So basically, I have no idea what's going on. My fatigue is rampantly out of control and I know I need to be seen. Does anyone have any pointers or ideas? There's so much knowledge among us...anything you may have could help. I appreciate it.
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