Although I was officially diagnosed with Crohn's last year, in retrospect I've had symptoms for much longer. I started Humira in 2009 to treat psoriatic arthritis, which also unwittingly treated the Crohn's.
I got my diagnosis after a year of Humira non-compliance. My arthritis was doing well even if I just took it every few weeks, but what I didn't know was that Crohn's was waiting in the wings, and my non-compliance gave it the chance it needed to show itself.
I was first hospitalized because of rapid weight loss, intense cramping and bloody stools. That's when I received the Crohn's diagnosis. As treatment, I received a Humira induction of four injections at the same time, then moved to weekly injections, and now I take them every other week.
Prior to my first hospitalization last year, I had an intense episode that came started out of nowhere with a metallic taste in my mouth, followed immediately by strong cramping/diarrhea with simultaneous vomiting. My hands and feet tingled as if they had been asleep, and sweat poured off me. I've now had five or six of the same type episodes, and as far as I can tell, they don't correlate to anything in particular.
During these episodes, I feel like I'm literally going to die, and I'm so focused inwardly on surviving that I'm not even able to communicate. They generally last two to three hours and when they're over, I fall instantly asleep.
Because there are no early warning signs of an impending episode, I'm terrified to leave my house. So far, I've been lucky, because they've happened either at home or at work, where my coworkers could call my husband to help get me home. Luckily, I'm able to work from home, so I rarely go into the office now.
I'm a health care writer and know lots about managing chronic conditions as a result. But that knowledge isn't helping me get through this. For the last couple of months, I've cried constantly and felt intense guilt about the effect my illness has on those around me. My state of mind is affecting my work performance and relationships with my husband, family and coworkers.
I joined this forum for two reasons: to find emotional support from others who are in the same boat and to see if anyone else has ever experienced the type of episodes I described. So far, they've flummoxed my doctors.
I got my diagnosis after a year of Humira non-compliance. My arthritis was doing well even if I just took it every few weeks, but what I didn't know was that Crohn's was waiting in the wings, and my non-compliance gave it the chance it needed to show itself.
I was first hospitalized because of rapid weight loss, intense cramping and bloody stools. That's when I received the Crohn's diagnosis. As treatment, I received a Humira induction of four injections at the same time, then moved to weekly injections, and now I take them every other week.
Prior to my first hospitalization last year, I had an intense episode that came started out of nowhere with a metallic taste in my mouth, followed immediately by strong cramping/diarrhea with simultaneous vomiting. My hands and feet tingled as if they had been asleep, and sweat poured off me. I've now had five or six of the same type episodes, and as far as I can tell, they don't correlate to anything in particular.
During these episodes, I feel like I'm literally going to die, and I'm so focused inwardly on surviving that I'm not even able to communicate. They generally last two to three hours and when they're over, I fall instantly asleep.
Because there are no early warning signs of an impending episode, I'm terrified to leave my house. So far, I've been lucky, because they've happened either at home or at work, where my coworkers could call my husband to help get me home. Luckily, I'm able to work from home, so I rarely go into the office now.
I'm a health care writer and know lots about managing chronic conditions as a result. But that knowledge isn't helping me get through this. For the last couple of months, I've cried constantly and felt intense guilt about the effect my illness has on those around me. My state of mind is affecting my work performance and relationships with my husband, family and coworkers.
I joined this forum for two reasons: to find emotional support from others who are in the same boat and to see if anyone else has ever experienced the type of episodes I described. So far, they've flummoxed my doctors.
