In 2014, after a colonoscopy I was told I had inflammation in my ileum; they took biopsies and I had to wait 6 weeks for those to come back to my GP.
The six weeks passed and we called them to find out, at the time my GP wasn't in that day, so we spoke to the receptionist; she told me the biopsy came back inconclusive, but my GP wanted to see me to talk about it...
The day after, I went in to see her and she referred me to a gastroenterologist at our local hospital, since it came back inconclusive and she wasn't going to settle for that after everything else U.U
So she got an appointment for me, and I went to see him; we where talking to him, well... my mum was doing the talking, filling him in on everything, and he looked at us and said; "You're talking like you haven't had a diagnosis yet." we hadn't...he looked at my mum like she was joking, then went; "It came back as Crohn's disease. Mild, but still there and obviously still painful."
He then went on to say he wanted to do an MRI to make sure my small bowel was okay...MRI came back, in his words; "No different than what we already knew, so I have no worries there."
So yay, finally had a diagnosis. Not one I particularly wanted, but after being told it was all in my head, or normal for a girl my age again and again it was somewhat nice to have something on paper, almost like a flip off to those doctors...
Now, for the confusing part. Fast forward to this time last year, my first year at University and I was hospitalised with my first flare since diagnosis...it was agony, even the morphine barely touched the pain =( after two weeks of being on IV steroids, I was finally well enough to be discharged, but the doctor I was under there decided to do a follow up MRI to make sure nothing had gotten worse...
By this point, I'd had two lots of steroids to get everything under control and back to how it was, but I went for the MRI.
He replied via letter a few weeks later with the results.
No sign of Crohn's disease or narrowing...
Does that mean it's no longer active, like the steroids worked or does that mean I don't even have it? When I see "No sign" I assume that means the diagnosis I was given was wrong...
I never even got a follow up appointment to see him to discuss it, so I have no idea where to take this from here. I have something, that much is pretty clear to me, but the thought of going through test after test again fills me with utter dread
Right now, the only medication I have is buscopan :C Some days they help big time, others they don't even touch the pain...but I don't know what to do...I'm incredibly shy, and it was embarrassing enough finding out a 'diagnosis' the first time...
I'm just so sick of never being told anything properly...it's MY body, surely I should know what the heck's going on in it!! I have a lot of the symptoms that go with Crohn's...so I really don't know, I was under the hospitals IBD team, and they were talking about starting me on certain types of drugs, since I got the reply from the MRI, haven't heard a peep from them either...
I can't even really start again cause I'm under gastroenterologists both at home and at Uni...that would just be super awkward...I just feel majorly dropped right now...
:confused2:
The six weeks passed and we called them to find out, at the time my GP wasn't in that day, so we spoke to the receptionist; she told me the biopsy came back inconclusive, but my GP wanted to see me to talk about it...
The day after, I went in to see her and she referred me to a gastroenterologist at our local hospital, since it came back inconclusive and she wasn't going to settle for that after everything else U.U
So she got an appointment for me, and I went to see him; we where talking to him, well... my mum was doing the talking, filling him in on everything, and he looked at us and said; "You're talking like you haven't had a diagnosis yet." we hadn't...he looked at my mum like she was joking, then went; "It came back as Crohn's disease. Mild, but still there and obviously still painful."
He then went on to say he wanted to do an MRI to make sure my small bowel was okay...MRI came back, in his words; "No different than what we already knew, so I have no worries there."
So yay, finally had a diagnosis. Not one I particularly wanted, but after being told it was all in my head, or normal for a girl my age again and again it was somewhat nice to have something on paper, almost like a flip off to those doctors...
Now, for the confusing part. Fast forward to this time last year, my first year at University and I was hospitalised with my first flare since diagnosis...it was agony, even the morphine barely touched the pain =( after two weeks of being on IV steroids, I was finally well enough to be discharged, but the doctor I was under there decided to do a follow up MRI to make sure nothing had gotten worse...
By this point, I'd had two lots of steroids to get everything under control and back to how it was, but I went for the MRI.
He replied via letter a few weeks later with the results.
No sign of Crohn's disease or narrowing...
Does that mean it's no longer active, like the steroids worked or does that mean I don't even have it? When I see "No sign" I assume that means the diagnosis I was given was wrong...
I never even got a follow up appointment to see him to discuss it, so I have no idea where to take this from here. I have something, that much is pretty clear to me, but the thought of going through test after test again fills me with utter dread
Right now, the only medication I have is buscopan :C Some days they help big time, others they don't even touch the pain...but I don't know what to do...I'm incredibly shy, and it was embarrassing enough finding out a 'diagnosis' the first time...
I'm just so sick of never being told anything properly...it's MY body, surely I should know what the heck's going on in it!! I have a lot of the symptoms that go with Crohn's...so I really don't know, I was under the hospitals IBD team, and they were talking about starting me on certain types of drugs, since I got the reply from the MRI, haven't heard a peep from them either...
I can't even really start again cause I'm under gastroenterologists both at home and at Uni...that would just be super awkward...I just feel majorly dropped right now...
:confused2:
