Greetings!
I wanted to thank everyone for sharing their stories. Like so many of you, I have felt so alone in my struggle with Crohn’s. I have chosen only to tell a select few of my nearest and dearest, but I've never felt I have anyone who can relate to what I'm going/have gone through. This site is overwhelmingly full of wonderful people and stories and advice.
My story goes like this:
As a baby, so I'm told, I cried and cried for "no reason at all". My mom said she always thought I had a tummy ache but he doctors never found anything that indicated a reason for my fussy fits.
As a small child I was always thin and frail and I constantly complained that all food made my tummy hurt. In my little kid mind I thought my tummy was turning into stone. My mom took me to get an upper GI but they didn't find anything and told my mom I was probably making it up for attention because of my parent’s pending divorce. Also as a small child I could not tolerate elastic around my waist or a tight belt. (does anyone else here hate elastic?)
As a teen I was still very thin and frail, and still had issues with my "tummy turning to stone". I was constantly being accused of having an eating disorder because I was so skinny even though I ate like a pig. I developed a complex about eating and overcompensated to make everyone stop accusing by eating tons of sweets and ice cream. I still have a bit of a complex about it even though I am now of a healthy weight. As a teen I began suffering from chronic extreme joint pain mostly in my hips as well as one of my shoulders and now in my feet as well.
I went to so many doctors over the years with various complaints that never could be diagnosed. I was always a mystery and would leave the doctor's office confused and frustrated and was made to feel "it was all in my head." My family and friends thought I was hypochondriac- but I knew that something was wrong.
I was diagnosed in 2008 with Crohns. I saw a bit of blood when I went to the bathroom, but it really was not much and I honestly was not alarmed in the least. I had severe cramping at night and would wake up out of a dead sleep doubled over in pain. After a couple weeks I still saw the blood so I went to the GI doc just to be safe.
I had a terrible experience with my GI doc. She immediately ordered a colonoscopy but refused to tell me what any possible outcomes could be. Waking up in a fog in recovery after a night of non-stop vomiting from the prep, she blurted out that I had Crohn's and to look it up on the internet if I didn’t know what it was. She then blurted out that I'd be at minimum on 9 pills a day for the rest of my life. She also handed my fiancé pictures of my colon which I still have nightmares about till this day. I can only imagine what those picts did to him! Poor guy. He still married me, so I guess he's not too terribly scarred.
I currently take only 4 pills a day of Colezal even though I'm prescribed 9, and it seems to be effective for me. Even though it's not supposed to effect joint pain, it totoally helps. If I stop taking my meds my joint pain immediatley returns. I also take lots of probiotics, B Complex, Oil blends, Tumeric supplements and regularly go to acupuncture and chiropractor. The only symptoms I get currently are pain in my stomach and occasional urgency to “go”, and I still get some joint pain. I know I'm lucky to not have experienced the "real bad stuff", but I live in constant fear that I will.
Unlike most it seems, my symptoms were mainly in my joints which seems to baffle most docs I've seen. I had biopsies which were conclusivley Crohn's, but I had blood tests that pointed to UC, which also baffles most docs I’ve seen. But I’m told to go with the biopsies since they’re more accurate.
Currently, I'm 29 years old and I feel pretty good. Emotionally I have mostly good days, but occasionally it all just feels so heavy. I am now experiencing fertility issues (may or may not be related to Crohn’s) and I'm often concerned about passing on the bad genes. But the docs I've seen assure me that the odds are not great enough to deter me from trying to conceive. I eat super careful and acupuncture seems to be the most effective treatment I’ve tried.
So that's me! Thanks for letting me share!
I wanted to thank everyone for sharing their stories. Like so many of you, I have felt so alone in my struggle with Crohn’s. I have chosen only to tell a select few of my nearest and dearest, but I've never felt I have anyone who can relate to what I'm going/have gone through. This site is overwhelmingly full of wonderful people and stories and advice.
My story goes like this:
As a baby, so I'm told, I cried and cried for "no reason at all". My mom said she always thought I had a tummy ache but he doctors never found anything that indicated a reason for my fussy fits.
As a small child I was always thin and frail and I constantly complained that all food made my tummy hurt. In my little kid mind I thought my tummy was turning into stone. My mom took me to get an upper GI but they didn't find anything and told my mom I was probably making it up for attention because of my parent’s pending divorce. Also as a small child I could not tolerate elastic around my waist or a tight belt. (does anyone else here hate elastic?)
As a teen I was still very thin and frail, and still had issues with my "tummy turning to stone". I was constantly being accused of having an eating disorder because I was so skinny even though I ate like a pig. I developed a complex about eating and overcompensated to make everyone stop accusing by eating tons of sweets and ice cream. I still have a bit of a complex about it even though I am now of a healthy weight. As a teen I began suffering from chronic extreme joint pain mostly in my hips as well as one of my shoulders and now in my feet as well.
I went to so many doctors over the years with various complaints that never could be diagnosed. I was always a mystery and would leave the doctor's office confused and frustrated and was made to feel "it was all in my head." My family and friends thought I was hypochondriac- but I knew that something was wrong.
I was diagnosed in 2008 with Crohns. I saw a bit of blood when I went to the bathroom, but it really was not much and I honestly was not alarmed in the least. I had severe cramping at night and would wake up out of a dead sleep doubled over in pain. After a couple weeks I still saw the blood so I went to the GI doc just to be safe.
I had a terrible experience with my GI doc. She immediately ordered a colonoscopy but refused to tell me what any possible outcomes could be. Waking up in a fog in recovery after a night of non-stop vomiting from the prep, she blurted out that I had Crohn's and to look it up on the internet if I didn’t know what it was. She then blurted out that I'd be at minimum on 9 pills a day for the rest of my life. She also handed my fiancé pictures of my colon which I still have nightmares about till this day. I can only imagine what those picts did to him! Poor guy. He still married me, so I guess he's not too terribly scarred.
I currently take only 4 pills a day of Colezal even though I'm prescribed 9, and it seems to be effective for me. Even though it's not supposed to effect joint pain, it totoally helps. If I stop taking my meds my joint pain immediatley returns. I also take lots of probiotics, B Complex, Oil blends, Tumeric supplements and regularly go to acupuncture and chiropractor. The only symptoms I get currently are pain in my stomach and occasional urgency to “go”, and I still get some joint pain. I know I'm lucky to not have experienced the "real bad stuff", but I live in constant fear that I will.
Unlike most it seems, my symptoms were mainly in my joints which seems to baffle most docs I've seen. I had biopsies which were conclusivley Crohn's, but I had blood tests that pointed to UC, which also baffles most docs I’ve seen. But I’m told to go with the biopsies since they’re more accurate.
Currently, I'm 29 years old and I feel pretty good. Emotionally I have mostly good days, but occasionally it all just feels so heavy. I am now experiencing fertility issues (may or may not be related to Crohn’s) and I'm often concerned about passing on the bad genes. But the docs I've seen assure me that the odds are not great enough to deter me from trying to conceive. I eat super careful and acupuncture seems to be the most effective treatment I’ve tried.
So that's me! Thanks for letting me share!
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great to hear from someone doing well ! May it continue, and good luck with conceiving!
