Well, it is
a lot for me now, but in the pre-Crohn's era I could have blitzed my way through that lot without a single issue. Nowadays, after a blow-out like that, I invariably find I'm not hungry the next day, which is what happened yesterday - I literally only had one meal of ramen and eggs. So it all evens out.
I did see the surgeon. I was needlessly worried about
her not having the MRI results back - not only did she have them, but she showed them to me on the computer screen. To be honest, I'm not a radiologist and on my own I couldn't have made head nor tail of it, but luckily the surgeon named various organs for me - bladder, womb, etc. Which was nice.
My rectum is definitely inflamed. The walls are thickened and my surgeon said my rectum was twice the size it should be, which sounded a bit alarming. But frustratingly it couldn't show whether there was a stricture at the surgical join or not, because that bit couldn't be seen. My surgeon didn't think I had a stricture; I wasn't convinced. We actually had a clash near the beginning of the appointment. Not about
the stricture, but about
my diagnosis. She said I didn't have Crohn's; I was like, get the **** out of here, of course I have ****ing Crohn's! I didn't really swear, but I felt mad as hell when she said that. Thank god she found her own notes which said I'd had 15cm of 'obvious' Crohn's in the terminal ileum, because I'm not convinced she would ever have really believed me otherwise.
Part of the problem is that although everything was meant to have been centralised years ago, nothing actually is. I asked my surgeon if she had any of my notes from my previous hospitals and she said no. A budding stalinist state could take lessons from the NHS in how to erase an individual's past.
But another part of the problem is that I apparently really don't have a clearcut case of Crohn's colitis according to the pathology: I have some Crohn's features missing. I did believe my surgeon on this, particularly as I dimly remember her saying something about
it a couple of years ago. (I can't begin to remember the exact words and it was just something said in passing, which I was too slow to seize upon.) But when I asked her if I had indeterminate colitis, she hastily said no, it really was Crohn's, she'd been wrong and that I should forget what she previously said - think she was scared I'd blow up again, tbh. Or start begging for a j-pouch.
Anyway, it was partly because of that disagreement that I wasn't happy when the surgeon said she thought I didn't have a stricture; told her the tests seemed to say a different thing each time. She didn't say anything to that; she literally picked up some pad and started writing out an order for a flex sig - suits me! I'm not a doctor, but I do think the flex sig would probably have been the better test all along. An MRI scan would have picked up on fistulas and abscesses, but I never have those things: I have had, however, a stricture. Also, I'm doubly curious to see what the biopsies say now.
After that, spent a bit of time talking about
more personal stuff. I'm not very good at hiding my feelings at the best of times, and I really couldn't hide my disappointment and depression over the sodding Crohn's/colitis returning. We also talked about
the possibility of returning to an ileostomy. No decisions about
surgery made, but I didn't expect to make any decisions today. I agreed to try mesalazine enemas. I should have the flex sig in a couple of weeks and I'll see the surgeon again in 3-4 weeks. Oh yeah, and I've been given a prescript
ion for cholestyramine that everyone was bigging up in another thread: if it just helps with the excruciating butt burn, that'll be something.
That's all, folks. *collapses*
Dx Crohn's in summer of 2000. (Yay )
Tried and failed: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, various diets.
Had surgery Feb '13 - subtotal colectomy with end ileostomy. First thing to put me into remission in 13 years.
Had second surgery 10th July '15 to reverse the stoma and connect the ileum to the rectum. Feeling rough.