Hi. 
I was diagnosed with Crohn's Disease in August, 2 days before I left for three weeks to the art event called Burning Man. I had two good weeks, followed by a bad week out there in the desert. And I've been having mostly a really bad time since then.
I have health insurance from the County I live in. So, it's not great, but it's really a lot better than no health insurance at all. My first GI doctor was really horrible to me and even continued with taking biopsies during a colonoscopy, even though I was really, really clearly vocal and loud that I was awake and aware and could feel what she was doing. I have a new GI on 12/8. I''m hopeful about that.
I've been sick for about twenty years or so. Off and on. A lot of my flares were thought to be allergic reactions to food, because I also have a lot of allergies. I have an appointment in the allergy clinic to become clear on what food I'm allergic to in early January. In my twenties, they diagnosed me with an eating disorder, because I wouldn't eat (because it hurt!) and when I did eat, I would throw up (through no fault or desire of my own!). Again, no one believed me when I said that I wasn't eating because it hurt and I didn't actually *want* to throw up. I'm 5'6" and was down to about 120lbs then.
I lost my job in 2005, because I was late a lot and I missed a lot of work. I haven't been able to get and keep another job. I had a good corporate job and made good money. Enough to be able to help my mom and my little sister, donate to causes I believed in and wear nice clothes. All of those clothes are too big now. I've gone from a size 20 to a size 14 since 2007, which I know isn't a large loss from reading some of your stories.
My husband left me in 2007, because he was done with me not making money and, also, I think that because I didn't have a diagnosis, everyone, including him, pretty much thought I was lying about my pain and fatigue. So, I'm single and very concerned that I will be for the rest of my life.
So, now, I have a diagnosis, which is good, because I can start treating it, right? Ha ha... Right now, I'm on Pentasa, Donatel and Vicodin and I'm still in Pain and I still have loose stool and I still spend about two hours or so in the morning going back and forth to the bathroom. I'm really, really hoping the new GI will be more helpful to me.
I'm, also, homeless, because I have no resources and my family doesn't either. My mom is on Social Security and lost her house (where I lived with her after my divorce) about a year and a half ago. I am currently living with a family from church.
I just got food stamps, so that's a really good thing. I would like to get on disability and get my own place and have a bit of independence. Like a tiny studio apartment. Funny how things like Crohn's totally change your goals and priorities, right?
Oh, I also have a lot of sleeping disorders (apnea and parasomnias), PTSD, and a little brain tumor on my Pineal Gland.
Right now, I'm on my second day of a liquid diet----just stale sprite and broth and stuff like that, because the pain of eating just isn't worth it to me.
So, that is my story in a nutshell. A lot of pain. A lot of people not believing me. A lot of issues with food.
I hope to get some support here and I hope also to offer support.
I hope to learn more about this disease and how to live with it.
I would also really, really like to learn what I can eat without pain.
i
I was diagnosed with Crohn's Disease in August, 2 days before I left for three weeks to the art event called Burning Man. I had two good weeks, followed by a bad week out there in the desert. And I've been having mostly a really bad time since then.
I have health insurance from the County I live in. So, it's not great, but it's really a lot better than no health insurance at all. My first GI doctor was really horrible to me and even continued with taking biopsies during a colonoscopy, even though I was really, really clearly vocal and loud that I was awake and aware and could feel what she was doing. I have a new GI on 12/8. I''m hopeful about that.
I've been sick for about twenty years or so. Off and on. A lot of my flares were thought to be allergic reactions to food, because I also have a lot of allergies. I have an appointment in the allergy clinic to become clear on what food I'm allergic to in early January. In my twenties, they diagnosed me with an eating disorder, because I wouldn't eat (because it hurt!) and when I did eat, I would throw up (through no fault or desire of my own!). Again, no one believed me when I said that I wasn't eating because it hurt and I didn't actually *want* to throw up. I'm 5'6" and was down to about 120lbs then.
I lost my job in 2005, because I was late a lot and I missed a lot of work. I haven't been able to get and keep another job. I had a good corporate job and made good money. Enough to be able to help my mom and my little sister, donate to causes I believed in and wear nice clothes. All of those clothes are too big now. I've gone from a size 20 to a size 14 since 2007, which I know isn't a large loss from reading some of your stories.
My husband left me in 2007, because he was done with me not making money and, also, I think that because I didn't have a diagnosis, everyone, including him, pretty much thought I was lying about my pain and fatigue. So, I'm single and very concerned that I will be for the rest of my life.
So, now, I have a diagnosis, which is good, because I can start treating it, right? Ha ha... Right now, I'm on Pentasa, Donatel and Vicodin and I'm still in Pain and I still have loose stool and I still spend about two hours or so in the morning going back and forth to the bathroom. I'm really, really hoping the new GI will be more helpful to me.
I'm, also, homeless, because I have no resources and my family doesn't either. My mom is on Social Security and lost her house (where I lived with her after my divorce) about a year and a half ago. I am currently living with a family from church.
I just got food stamps, so that's a really good thing. I would like to get on disability and get my own place and have a bit of independence. Like a tiny studio apartment. Funny how things like Crohn's totally change your goals and priorities, right?
Oh, I also have a lot of sleeping disorders (apnea and parasomnias), PTSD, and a little brain tumor on my Pineal Gland.
Right now, I'm on my second day of a liquid diet----just stale sprite and broth and stuff like that, because the pain of eating just isn't worth it to me.
So, that is my story in a nutshell. A lot of pain. A lot of people not believing me. A lot of issues with food.
I hope to get some support here and I hope also to offer support.
I hope to learn more about this disease and how to live with it.
I would also really, really like to learn what I can eat without pain.
i
