Hello All,
This is my first post -- I'm in a desperate situation.
Diagnosed with UC in February. Started meds -- mesalamine and canasa - had severe allergic reaction-
the unbearable mouth sores began soon after I began the meds -- that was early march -- today, May 4th-- i still have them and they're huge and extremely painful (i cannot speak-- and I'm a professor...)
other symptoms: shingles, painful blistery lumps on my scalp, painful rash/bumps on arms/tush and, as of today, on my lady parts. unbearable ear ache (not in the last week) swollen lymph nodes around my neck-- oh, and excessive bleeding from the rectum. (it got so bad I needed a blood transfusion last month).
I have not had a normal bowel movement since January. And I am tethered
to the toilet-- have to be extremely careful with the timing of eating and drinking --because i've not made it to the bathroom in time on several occasions.
as well, the fatigue has been awful.
My calprotein level was teh highest my doctor at Cornell has ever seen. He has already had the suregry talk with me.
He seems to think that along with the UC-- I am having some kind of (powerful) systemic infection. what that is, he does not know.
He was about to start me on biologics-- but I did have a few promising days last week - and our last appointment fell on one of those days-- and my request was to wait two weeks before more meds. The hopeful days short-lived and gone.
Because this is all very new to me -- is there anyone out there that might have some
advice for me? (I should note my life is VERY stressful. Mom is dying -- and I am having serious financial issues.)
Thank you, in advance, for rading this long post - and any advce given is so very much appreciated. (UC = HELL)
jodi
This is my first post -- I'm in a desperate situation.
Diagnosed with UC in February. Started meds -- mesalamine and canasa - had severe allergic reaction-
the unbearable mouth sores began soon after I began the meds -- that was early march -- today, May 4th-- i still have them and they're huge and extremely painful (i cannot speak-- and I'm a professor...)
other symptoms: shingles, painful blistery lumps on my scalp, painful rash/bumps on arms/tush and, as of today, on my lady parts. unbearable ear ache (not in the last week) swollen lymph nodes around my neck-- oh, and excessive bleeding from the rectum. (it got so bad I needed a blood transfusion last month).
I have not had a normal bowel movement since January. And I am tethered
to the toilet-- have to be extremely careful with the timing of eating and drinking --because i've not made it to the bathroom in time on several occasions.
as well, the fatigue has been awful.
My calprotein level was teh highest my doctor at Cornell has ever seen. He has already had the suregry talk with me.
He seems to think that along with the UC-- I am having some kind of (powerful) systemic infection. what that is, he does not know.
He was about to start me on biologics-- but I did have a few promising days last week - and our last appointment fell on one of those days-- and my request was to wait two weeks before more meds. The hopeful days short-lived and gone.
Because this is all very new to me -- is there anyone out there that might have some
advice for me? (I should note my life is VERY stressful. Mom is dying -- and I am having serious financial issues.)
Thank you, in advance, for rading this long post - and any advce given is so very much appreciated. (UC = HELL)
jodi
