hello all!
I was diagnosed with Crohn's-Colitis about 11 years ago. At first, doctor thought just UC, but I soon developed other symptoms. Disease is entirely within my colon and rectum. I've had limited success with all the usual meds over the years - Remicade, Entyvio, Humira, oral and rectal corticosteroids. Stelara worked the best and longest, but now it's efficacy seems to be waning. I just started on Azathioprine. I've been in pretty bad flare since July. Constant bowel movements, up all night, blood mucous, cramps, the works. I finally had to put in for FMLA, which is about to run out. I am lucky enough to have an office job, but even that had proved difficult. I have no energy at all - from lack of sleep, anemia, anxiety. I had a couple of accidents at work. Unavoidable. As we know, you can go from "fine" to the "poop is coming out" in about 5 seconds. Embarrassing, and fodder for the jerks that seem to be everywhere in the world we live in. What is wrong with people? My life revolves around this disease - "where is the bathroom? will I make it? do I have spare clothes? Can I go to my daughter's recital? Will I be able to sit near the end of the row? What kind of permanent damage has been done to my colon by this disease? How about to my liver from meds? All of this has my head spinning constantly. Additionally, I went from a very active to a very sedentary life. I was an avid runner, 5Ks/10ks every weekend, one or two marathons a year. Now I do nothing. and have gained almost 100 lbs, which also affects my health.
I read so many other stories, and I know I am far from alone. I am lucky, in that I have a workplace that is accommodating. Other jobs, other workplaces, I probably would have been fired. Can't really afford to go on disability or retire yet, if that was even possible, and put even more burden on my wife.
I guess I'm just venting, I'd like to know there is hope for this and so many other auto-immune diseases.
As far as azathioprine, can anyone comment on their experience? I know it takes a while to have an effect. I've been on a 100mg dose 3 weeks and holding out hope. I'm 6'3., 295, so he wanted to start me on a higher dose. Doc has kept me on Stelara, hoping that once I am in remission, we can try to stop the azathioprine.
I'm also considering acupuncture. Anyone tried this? Maybe just help me with the sleep and anxiety.
Thanks for reading, thanks for the support!
I was diagnosed with Crohn's-Colitis about 11 years ago. At first, doctor thought just UC, but I soon developed other symptoms. Disease is entirely within my colon and rectum. I've had limited success with all the usual meds over the years - Remicade, Entyvio, Humira, oral and rectal corticosteroids. Stelara worked the best and longest, but now it's efficacy seems to be waning. I just started on Azathioprine. I've been in pretty bad flare since July. Constant bowel movements, up all night, blood mucous, cramps, the works. I finally had to put in for FMLA, which is about to run out. I am lucky enough to have an office job, but even that had proved difficult. I have no energy at all - from lack of sleep, anemia, anxiety. I had a couple of accidents at work. Unavoidable. As we know, you can go from "fine" to the "poop is coming out" in about 5 seconds. Embarrassing, and fodder for the jerks that seem to be everywhere in the world we live in. What is wrong with people? My life revolves around this disease - "where is the bathroom? will I make it? do I have spare clothes? Can I go to my daughter's recital? Will I be able to sit near the end of the row? What kind of permanent damage has been done to my colon by this disease? How about to my liver from meds? All of this has my head spinning constantly. Additionally, I went from a very active to a very sedentary life. I was an avid runner, 5Ks/10ks every weekend, one or two marathons a year. Now I do nothing. and have gained almost 100 lbs, which also affects my health.
I read so many other stories, and I know I am far from alone. I am lucky, in that I have a workplace that is accommodating. Other jobs, other workplaces, I probably would have been fired. Can't really afford to go on disability or retire yet, if that was even possible, and put even more burden on my wife.
I guess I'm just venting, I'd like to know there is hope for this and so many other auto-immune diseases.
As far as azathioprine, can anyone comment on their experience? I know it takes a while to have an effect. I've been on a 100mg dose 3 weeks and holding out hope. I'm 6'3., 295, so he wanted to start me on a higher dose. Doc has kept me on Stelara, hoping that once I am in remission, we can try to stop the azathioprine.
I'm also considering acupuncture. Anyone tried this? Maybe just help me with the sleep and anxiety.
Thanks for reading, thanks for the support!
