in 2012 I was in the hospital for my CD. Colonoscopy found skip lesions in the
colon ( left sided colitis, Crohns Colitis). Biopsy showed ischemic colitis) bowel. Otherwise "normal". Small bowel series
showed CD beyond the reach of the scope. As I was already diagnosed this was
enough for the Dr to keep me on the prednisone they started the previous week when I was admitted t the hospital. eventually tried Remiacade for 6 months, didn't get the results I wanted. At the time I did not know using another drug with Remicade showed better results. He was hesitant. Four months of Humira, 2 months of Cimzia, no remission. Steroids on and off. Finally we did a CT scan with and without contrast, showed thickening in the same place as the small bpwel series a few years prev. We BOTH agreed to go back on Remicade, in 6 months if things were still rough we would add Imuron. At the 6th month mark, Dr changes his mind- wants colonoscopy first. I say- you have never nor has any Dr ever been able to reach in that way, so ok lets do it but, lets not it affect the treatment.
Colonoscopy was a joke- results and biopsy "normal". So after one year- he wants to take me off Remicade!?! ARE YOU KIDDING ME!?! No he was not.
I am on disability for CD, I am still having symptoms. I ask, were you able to get into the duodenum ( pretty sure thats the spot), you know where the SBS and CT showed the issue. NO he said a scope won't reach that far.
By this point I am crying- I am so over whelmed. He says I don't want to stop it now- your under a lot of stress and you need to be able to take care of your husband- he was diagnosed last month with stage three pancreatic cancer. I don't want you to flare up. You don't want what to flare up???? YOU JUST TOLD ME THAT HTE BIOPSY IS REALLY THE END ALL.
I am no longer able to cope with my life- I can no longer joke my symptoms away. I cant beg for medical care anymore, I just cant. Other than stopping all my meds and eating my trigger food to prove to them again I have CD, I don't know what to do.
I am no longer coping well with life- Oh and my blood pressure was 189-106 after that appt, went straight to my GP- he said don't hold all that in, let it out! And take this blood pressure pill!!
Any suggestions?
Lauren
colon ( left sided colitis, Crohns Colitis). Biopsy showed ischemic colitis) bowel. Otherwise "normal". Small bowel series
showed CD beyond the reach of the scope. As I was already diagnosed this was
enough for the Dr to keep me on the prednisone they started the previous week when I was admitted t the hospital. eventually tried Remiacade for 6 months, didn't get the results I wanted. At the time I did not know using another drug with Remicade showed better results. He was hesitant. Four months of Humira, 2 months of Cimzia, no remission. Steroids on and off. Finally we did a CT scan with and without contrast, showed thickening in the same place as the small bpwel series a few years prev. We BOTH agreed to go back on Remicade, in 6 months if things were still rough we would add Imuron. At the 6th month mark, Dr changes his mind- wants colonoscopy first. I say- you have never nor has any Dr ever been able to reach in that way, so ok lets do it but, lets not it affect the treatment.
Colonoscopy was a joke- results and biopsy "normal". So after one year- he wants to take me off Remicade!?! ARE YOU KIDDING ME!?! No he was not.
I am on disability for CD, I am still having symptoms. I ask, were you able to get into the duodenum ( pretty sure thats the spot), you know where the SBS and CT showed the issue. NO he said a scope won't reach that far.
By this point I am crying- I am so over whelmed. He says I don't want to stop it now- your under a lot of stress and you need to be able to take care of your husband- he was diagnosed last month with stage three pancreatic cancer. I don't want you to flare up. You don't want what to flare up???? YOU JUST TOLD ME THAT HTE BIOPSY IS REALLY THE END ALL.
I am no longer able to cope with my life- I can no longer joke my symptoms away. I cant beg for medical care anymore, I just cant. Other than stopping all my meds and eating my trigger food to prove to them again I have CD, I don't know what to do.
I am no longer coping well with life- Oh and my blood pressure was 189-106 after that appt, went straight to my GP- he said don't hold all that in, let it out! And take this blood pressure pill!!
Any suggestions?
Lauren
