Posted 2/1/2012 6:39 PM (GMT -7)
So, I had a long day at the hospital yesterday. Consultant appointment in the morning, Remicade in the afternoon. My mum, bless her, gave up on a trip to watch Warhorse with her sisters to accompany me.
The consultant was pretty good, really. Can't remember the words, but he said something which made it sound like he actually wanted to see me get better, and, as somebody who has always been haunted by a nagging feeling that nobody within the NHS cares, I appreciated that.
What I didn't appreciate so much was being given what, in retrospect, seems to be a false picture after my colonoscopy back in November. The IBD nurse made it sound like I was almost in remission. It was true that the stricture that they were looking for had gone, but there was still Crohn's in the colon, which appears to have been totally downplayed and passed off hastily as 'mild'.
Anyway, long story short, one colonopscopy, flexible sigmoidoscopy, and return of my stricture later, the Crohn's isn't mild at all, apparently. The consultant said it was severe and that he had 'never seen inflammation like that in a colon' after being on Remicade. Oh, right :-/ Also, he said that 80% of folks responded to Remicade and got better, but an unlucky 20% didn't. Guess which category I fall into? That's right, I was always the lucky one >_>.
That said, the plan of action is not only to carry on with the Remicade, but to double the dose for 3 goes. I would've had the first double dose yesterday, but there wasn't enough time to get approval from the PCT for funding, so I shall have a single dose in a month's time, then two double doses once every two months after that. I asked if that was the last option as far as non-surgical treatment was concerned, but apparently it isn't: I can still try Humira, methotrexate, thalidomide, and something even scarier-sounding with lots of numbers which I'd definitely never heard of.
In the meantime, as well as the Remicade, I'm gonna try an elemental diet for 6 weeks. (Fortisips are not an elemental drink, apparently. Maybe if they got striked by lightning, scorched by fire, or flooded by water they could become elemental. *tumbleweed rolls past* Yeah okay, that wasn't really funny <_<.) I don't have to do the elemental diet, but the consultant seemed fairly keen on the idea, and it seems like it would be worth a go, grim though it will be.
Surgery isn't on the cards just yet, although an appointment with a surgeon will still be arranged anyway, just to talk about it. I've decided spending 6 months to a year trying to heal my colon enough so that it doesn't need to be removed has to be worth a try. What is that time out of a lifetime, really? Something I keep on telling myself over and over... :-/
Eventually, I'll probably get a second opinion. My dad wants one and has been asking my GP about it. I mentioned this to my consultant and he was fine with the idea, but did warn me that his colleagues were unlikely to say anything radically different. I can believe it, really. As he said, they all came up through St. Mark's (remember that, ivy? you wanted me to go there!), all go to the same conferences, and so on.
It was both sad and touching when we left the consulting room. My mum had sat in upon the appointment and when we left she actually cried and took hold of my hand and said she was so sorry. My mum is a typical undemonstrative English woman who doesn't normally do things like that... :-/
Anyway. I'm tiring fast now and I'm sure I've inflicted quite a long enough post on you already. Suffice to say the Remicade infusion in the afternoon went okay; the only noteworthy thing to say about that is that the infusion centre has moved. It is not a move for the better. The old place was spacious and airy and pleasant. The new place isn't spacious and airy and pleasant. If, however, you like dingy walls of a shade of yellow designed to evoke fluorescent vomit, then look no further than the new place.