Posted 9/25/2014 12:31 PM (GMT -7)
So I went in today for a left-sided scope, which turned into a full colonoscopy (without any prep, something to be said for pooping so many times a day that your colon is virtually empty anyway!). My last left-sided scope was only 10 weeks ago, but because I haven't been faring so well on Remicade, he wanted to see how my colon looked. I had been having a accelerated dose of Remicade; I got it at 0, 2, 5 weeks & was supposed to be getting it every 6 weeks then, but got it today, which is 5 weeks since my last. Between my last infusion and today, I initially became constipated for 2 weeks and then started having loose movements 3 times a day, which quickly turned into 10+ liquid BMs, and I was in constant pain the whole time.
So today he said the inflammation is moderately better than my last scope 10 weeks ago, but is still very much there. Today I got a double dose (10mg/kg) and he's going to have me come every 4 weeks now. He also sent a away a calprotectin test and is going to do a blood test to check am I building antibodies to the Remi.
What really got me today though, was him telling me not to go on my holidays next week. Even though I could probably say now that in the back of my mind I knew that it wasn't a good idea for me to go, I was still hoping he would say it would be ok. But he says I'm too sick, I'm coming too close to a colectomy at this point and with all the tests I've to get done, etc.... Basically I just need to get healthy before I can do anything.
That news just about broke me, as I'd been holding on to going on holidays for months now, and it was really keeping me going. (I booked the holidays last June when Humira was working for those lovely few weeks, and I assumed I would still be ok in October - I know, I know, you can never tell with this disease though!)
I'm going to be seeing him again in 4/5 weeks, when all these tests are back, to make a decision about what to do then. To be honest right now, I think I'm going to request he refers me to a surgeon & seriously talk about him about making a decision about surgery, as I think it's the way to go for me...
In one way I feel like I'm giving up... But on the other hand...I think I've given it a fair shot - I've tried almost every drug available and it either made me worse, or improved for a few weeks & then wore off.
My quality of life is next to none - I'm supposed to be doing my PhD but it's come to a complete standstill. I never go out anymore - I went to a local shopping centre for 1.5 hours last weekend and nearly passed out. And then having to cancel my holiday just is the cherry on top for me. I don't want to keep doing this - even if the double dose of Remicade does make some improvement, it has a lifetime, and for me right now, that isn't good enough. I'm too young, and don't want to be waiting for my next flare, with no options left... Or keep pumping myself full of biologics, chemo drugs, and god knows what else in the future...
Although surgery does terrify me too... I know you'll never get your life back to the way it was with it - but I don't think I'll get my life back at this stage with my colon. I feel I might as well be without it, and without UC.
So sorry for the long rant... My family are supportive of me, but they don't fully get it, so just wanted to get it all out, and see what people think.
Thanks for reading if you got this far!
Female, 25, Ireland
Diagnosed July '13 (mild symptoms since end '11)
Cscope May '14 - moderate-severe pancolitis
Sigmoidoscopy July '14 - inflammation worsening
Flare since Dec '13
3200mg Asacolon; Remicade 17/07/'14; 500mg Asa supp x2 day; Prednisolone enema nightly; 2.5mg mtx (29/8/14), VSL#3.
Previous: cortisol enemas, Prednisolone, Zoton, Imuran, 6MP (pancreatitis), Humira, many diet mods.