I'm new here and have been sort of lurking around and posting a little so I figured I would introduce myself and my story. This will be long 
I am a 30 year old mental health counselor (therapist) from NYC. I was diagnosed with Crohn's disease in March 2012 after years of misdiagnosis and agony. I have never been in remission since my diagnosis.
I always had a "sensitive" stomach since I was a teenager. It did not interfere with my life much, except for a few times in high school when I had bad pains that landed me in the ER and was always blamed on my ovarian cysts.
In my early 20's my bouts of diarrhea became a little more disruptive and I found myself eating Imodium like candy. I made a few visits to the GI specialist who told me I was young and just stressed out and had IBS. They gave me absolutely nothing to help me and I continued on with my Imodium.
At 22 I graduated college and started a really stressful but well paying job in client relations. I was under a ton of pressure constantly, working under a quota and dealing with angry, screaming people all day. My stomach issues started to interfere with my work... And I felt like the stress was only making it worse. I made another trip to the GI doctor - this time he gave me Bentyl and told me again it was stress and IBS. It sort of helped and I made decision to leave my job and go back to school... Thinking this would make me happier and calmer. I bartended to get by while I researched different masters degree programs. I was always a very busy person. I worked at three different busy bars and was always out and traveling. I started to feel unwell more than well. My stomach was acting up more than usual. Bentyl wasn't helping anymore. I developed really bad anxiety and panic attacks due to my constant battling with nausea, pain and diarrhea. I missed a ton of work. I became afraid to leave my house.
My insurance changed and I started seeing a new doctor - he told me the same IBS BS. I had 2 ER visits with catscans a year apart that showed inflammation in the same places. Doctor said it was a stomach virus. Every time for over 3 months that I went to him with severe diarrhea, that had now become bloody and with mucous, he said I had a stomach virus. In fact he gave me a colonoscopy because I begged, and when it showed inflammation, yet again in the same spots as my catscan, he again blamed the never ending stomach virus.
I went back to my old GI doctor and paid cash for his opinion. Which was that I had IBS and needed to eat a lot of fiber and yogurt. I started taking fiber supplements and my bloody diarrhea became worse. More blood and going 20 times or more a day. At this point I really wasn't working and had given up on the idea of going back to school. I developed a really severe fissure, so bad that I was unable to walk. After a night of screaming and crying in pain, my mother called the doctor and asked if he could see me right away. He said no. He said fissures didn't happen from diarrhea, only constipation and that I needed even more fiber and yogurt. And so I did, and so I ripped even more open. He reluctantly agreed to see me and was horrified when he saw my fissure. He had to do some kind of procedure to help close it and told me I needed to see someone who took my insurance.
After that I saw someone at NYU who put me on a gluten free diet and that combined with anti diarrhea meds got me sort of functional and confident again. I started grad school and once the stress of that began, the debilitating symptoms came back. I was becoming anxious and panic ridden again and went on a cocktail of elavil and lexapro to help me get through. I saw a new GI because NYU didn't take my insurance now, and he gave me an endoscopy and told me he didn't know what my problem was and couldn't help me feel better.
I suffered for a few more months with bad weight loss and constant bleeding and diarrhea until a friend with similar issues finally got diagnosed with UC and recommended a new doctor to me. This new doctor promised me he wouldn't give up until he got me better. He gave me a colonoscopy and endoscopy and said it was blatantly obvious I had IBD and had no idea why the other doctors had such a hard time diagnosing me. He diagnosed me with crohns but my worst areas are in my large intestine, specifically the recto-sigmoid colon in patches. I also had gastritis, inflammation in my duodenum and sores in my mouth.
I have been through a lot of ups and downs since being diagnosed. I have never been in remission although in Spring/ Summer I have more good days than bad and am generally very ill from October - March. I have also developed sacroiliac inflammation and arthritis.
I am going through a hard time again after having a pretty good summer. I'm coming out of a bad flare and started antidepressants again because my anxiety came back really bad. I managed to finish grad school during all of this and I am working in a private practice... I love my job when I feel well but when I am sick everything is such an effort. I am hoping I can find the kind of support here that is hard to get from family and friends who just have no idea what a struggle chronic illness is.
If you read this - thanks for listening
I am a 30 year old mental health counselor (therapist) from NYC. I was diagnosed with Crohn's disease in March 2012 after years of misdiagnosis and agony. I have never been in remission since my diagnosis.
I always had a "sensitive" stomach since I was a teenager. It did not interfere with my life much, except for a few times in high school when I had bad pains that landed me in the ER and was always blamed on my ovarian cysts.
In my early 20's my bouts of diarrhea became a little more disruptive and I found myself eating Imodium like candy. I made a few visits to the GI specialist who told me I was young and just stressed out and had IBS. They gave me absolutely nothing to help me and I continued on with my Imodium.
At 22 I graduated college and started a really stressful but well paying job in client relations. I was under a ton of pressure constantly, working under a quota and dealing with angry, screaming people all day. My stomach issues started to interfere with my work... And I felt like the stress was only making it worse. I made another trip to the GI doctor - this time he gave me Bentyl and told me again it was stress and IBS. It sort of helped and I made decision to leave my job and go back to school... Thinking this would make me happier and calmer. I bartended to get by while I researched different masters degree programs. I was always a very busy person. I worked at three different busy bars and was always out and traveling. I started to feel unwell more than well. My stomach was acting up more than usual. Bentyl wasn't helping anymore. I developed really bad anxiety and panic attacks due to my constant battling with nausea, pain and diarrhea. I missed a ton of work. I became afraid to leave my house.
My insurance changed and I started seeing a new doctor - he told me the same IBS BS. I had 2 ER visits with catscans a year apart that showed inflammation in the same places. Doctor said it was a stomach virus. Every time for over 3 months that I went to him with severe diarrhea, that had now become bloody and with mucous, he said I had a stomach virus. In fact he gave me a colonoscopy because I begged, and when it showed inflammation, yet again in the same spots as my catscan, he again blamed the never ending stomach virus.
I went back to my old GI doctor and paid cash for his opinion. Which was that I had IBS and needed to eat a lot of fiber and yogurt. I started taking fiber supplements and my bloody diarrhea became worse. More blood and going 20 times or more a day. At this point I really wasn't working and had given up on the idea of going back to school. I developed a really severe fissure, so bad that I was unable to walk. After a night of screaming and crying in pain, my mother called the doctor and asked if he could see me right away. He said no. He said fissures didn't happen from diarrhea, only constipation and that I needed even more fiber and yogurt. And so I did, and so I ripped even more open. He reluctantly agreed to see me and was horrified when he saw my fissure. He had to do some kind of procedure to help close it and told me I needed to see someone who took my insurance.
After that I saw someone at NYU who put me on a gluten free diet and that combined with anti diarrhea meds got me sort of functional and confident again. I started grad school and once the stress of that began, the debilitating symptoms came back. I was becoming anxious and panic ridden again and went on a cocktail of elavil and lexapro to help me get through. I saw a new GI because NYU didn't take my insurance now, and he gave me an endoscopy and told me he didn't know what my problem was and couldn't help me feel better.
I suffered for a few more months with bad weight loss and constant bleeding and diarrhea until a friend with similar issues finally got diagnosed with UC and recommended a new doctor to me. This new doctor promised me he wouldn't give up until he got me better. He gave me a colonoscopy and endoscopy and said it was blatantly obvious I had IBD and had no idea why the other doctors had such a hard time diagnosing me. He diagnosed me with crohns but my worst areas are in my large intestine, specifically the recto-sigmoid colon in patches. I also had gastritis, inflammation in my duodenum and sores in my mouth.
I have been through a lot of ups and downs since being diagnosed. I have never been in remission although in Spring/ Summer I have more good days than bad and am generally very ill from October - March. I have also developed sacroiliac inflammation and arthritis.
I am going through a hard time again after having a pretty good summer. I'm coming out of a bad flare and started antidepressants again because my anxiety came back really bad. I managed to finish grad school during all of this and I am working in a private practice... I love my job when I feel well but when I am sick everything is such an effort. I am hoping I can find the kind of support here that is hard to get from family and friends who just have no idea what a struggle chronic illness is.
If you read this - thanks for listening
