My last flare was in May this year; one of the worst I've experienced. Four or five days in the hospital with an N G tube for 2 or 3 days; SEVERE pain just below my navel, uncontrollable vomiting. The CT at the time showed an obstruction according to E R doc, but I was passing gas & going #2 the whole time, even just after arriving at the E R...
I saw gastroenterologist about a month later, she said obviously my body must "like" to make strictures & I should be on a biologic. She advised I'd have to have CT enterography first.
I had an abscess in my knee right after that (knee that has been replaced 2 years ago) so was just able to have the CT enterography done last week. Also had EGD & colonoscopy in July; both were "normal".
I just received the CT results; doc says it doesn't show any narrowing or strictures but does show scar tissue from 2012 bowel resection @ terminal I l e u m. Didn't say anything about starting me on biologic.
In 2011 when docs were trying to figure out what was wrong with me I had a CT enterography too, & it was normal. I continued having attacks of severe pain & vomiting requiring E R visits & hospitalizations.
Finally I swallowed a camera capsule that showed several blisters & a stricture @ my terminal I l e u m & had the bowel resection & the camera that got stuck was retrieved. I suspect the situation is the same this time; when I saw the doctor in June she said she was sure I had a stricture from how I described my pain that I was still experiencing daily; constant pain all the way across my lower abdomen below my navel that feels like SEVERE gas pains but isn't relieved by passing gas or bowel movement, but no stricture showed up on the CT.
I have severe anemia; had 7 Venofer infusions in July but hemoglobin still between 8 & 9. The Baylor hematologist said my levels were "good enough for government work" & that there are millions of people walking around with hemoglobin as low as mine & they're leading productive lives; I feel so tired I can't get out of bed.
For the last 2-3 months I feel so exhausted every day I have to stay in bed & I have terrible nausea & abdominal pain; I also run a fever every day of 99-100 degrees, sometimes a little more than that. Doc says just part of having Crohn's. My mental & emotional health are both very poor.
I have tried to convey my level of desperation to feel better to my doctor but I'm afraid she's not going to put me on a biologic because the CT didn't show any strictures. I don't want to swallow another camera capsule that's going to get stuck & require surgery again; I realize the stricture & area with blisters had to be removed too, but my fervent hope is that if I have another stricture & blisters that starting on a biologic will help it & hopefully prevent surgical intervention. Am I wrong in thinking this way?
For those of you on biologics, did your doctor put you on a biologic if your CT didn't show a stricture?
I can't take feeling this sick for much longer;I have no life & feel horrible!
I've sent her an e-mail stating all this; I just want to know if one's CT has to show strictures for doctors to prescribe biologics?
Thank you for reading my long post & for any advice or comments.
Dana B.
East TX
Diagnosed finally in 2012 after 3 1/2 yrs of tests, ER visits, hospitalizations
Take Budesonide 9 mg daily
Align prohibitive 1 a day
Losartan for hypertension
OPANA E R 30 mg & o x y c o d o n e 20 mg for severe & chronic pain from degenerative disc disease & severe osteoarthritis of left knee & left foot (partial traumatic amputation at age 4)
B u p r o p I o n 150 mg a day for depression
C L O N A Z A P A M 1 mg 2 x daily for anxiety
(I can't figure out how to make this part of my signature nor can I figure out how to put my picture on here; I tried & got message about pixel size?)
I saw gastroenterologist about a month later, she said obviously my body must "like" to make strictures & I should be on a biologic. She advised I'd have to have CT enterography first.
I had an abscess in my knee right after that (knee that has been replaced 2 years ago) so was just able to have the CT enterography done last week. Also had EGD & colonoscopy in July; both were "normal".
I just received the CT results; doc says it doesn't show any narrowing or strictures but does show scar tissue from 2012 bowel resection @ terminal I l e u m. Didn't say anything about starting me on biologic.
In 2011 when docs were trying to figure out what was wrong with me I had a CT enterography too, & it was normal. I continued having attacks of severe pain & vomiting requiring E R visits & hospitalizations.
Finally I swallowed a camera capsule that showed several blisters & a stricture @ my terminal I l e u m & had the bowel resection & the camera that got stuck was retrieved. I suspect the situation is the same this time; when I saw the doctor in June she said she was sure I had a stricture from how I described my pain that I was still experiencing daily; constant pain all the way across my lower abdomen below my navel that feels like SEVERE gas pains but isn't relieved by passing gas or bowel movement, but no stricture showed up on the CT.
I have severe anemia; had 7 Venofer infusions in July but hemoglobin still between 8 & 9. The Baylor hematologist said my levels were "good enough for government work" & that there are millions of people walking around with hemoglobin as low as mine & they're leading productive lives; I feel so tired I can't get out of bed.
For the last 2-3 months I feel so exhausted every day I have to stay in bed & I have terrible nausea & abdominal pain; I also run a fever every day of 99-100 degrees, sometimes a little more than that. Doc says just part of having Crohn's. My mental & emotional health are both very poor.
I have tried to convey my level of desperation to feel better to my doctor but I'm afraid she's not going to put me on a biologic because the CT didn't show any strictures. I don't want to swallow another camera capsule that's going to get stuck & require surgery again; I realize the stricture & area with blisters had to be removed too, but my fervent hope is that if I have another stricture & blisters that starting on a biologic will help it & hopefully prevent surgical intervention. Am I wrong in thinking this way?
For those of you on biologics, did your doctor put you on a biologic if your CT didn't show a stricture?
I can't take feeling this sick for much longer;I have no life & feel horrible!
I've sent her an e-mail stating all this; I just want to know if one's CT has to show strictures for doctors to prescribe biologics?
Thank you for reading my long post & for any advice or comments.
Dana B.
East TX
Diagnosed finally in 2012 after 3 1/2 yrs of tests, ER visits, hospitalizations
Take Budesonide 9 mg daily
Align prohibitive 1 a day
Losartan for hypertension
OPANA E R 30 mg & o x y c o d o n e 20 mg for severe & chronic pain from degenerative disc disease & severe osteoarthritis of left knee & left foot (partial traumatic amputation at age 4)
B u p r o p I o n 150 mg a day for depression
C L O N A Z A P A M 1 mg 2 x daily for anxiety
(I can't figure out how to make this part of my signature nor can I figure out how to put my picture on here; I tried & got message about pixel size?)
