My appointment has been delayed

It was on the 22nd April, it's now on the 1st July. More confusingly, the new letter says my appointment is with my GI instead of an IBD nurse.

I don't really give a flying rat's arse who I see at this point. I just want to start 6MP or azathioprine ASAP, since it takes 3 months to start working and Entocort has done a bit but not worked wonders. I sent a slightly pissy email to my IBD nurse complaining about the delay and asking if my GP could prescribe 6MP or azathioprine.

Oh, the miniscule, petty dramas of my iife: they never end.

.... or you could hang out at the back entrance to a gym and see what you could score from one of the juice jockeys. With an open mind and enough chemicals you could become a Russian gymnast. ;-)

That is not vaguely a minuscule problem.....I can see why you are angry. The IBD nurse better prescribe in the meantime.....sheesh!

Well guys, I had my health checkup. I don't smoke, I rarely drink, my BMI is 22, and my blood pressure is good. However, I have to wait for the results of the blood test, so I may still be in imminent danger of kicking the bucket: we'll find out in a week.

The only thing I need to improve on is my activity: I'm apparently 'inactive'. To be fair, that's better than 'comatose', but maybe they don't have that one as a category yet.

No, not a peep :-/

That's not like her, really, not to reply. I can't help wondering why. Regardless, I'll be chasing it up as soon as the Easter holidays are over.

You don't have to be optimistic....just neutral will work out well for you. You are back at square one in some ways, and you need to systematically try different treatments and see what works. I'm glad they are moving the appointment forward.

The Buddhist philosophy of not expecting things to go good or bad, but rather to try to stay neutral and deal with what comes each day has really helped me. I used to wake up hopeful to have a good day and then when it didn't happen, I'd be so disappointed. Just a thought...

That is ridiculously annoying!! So are you actually going to see your GI tomorrow? It seems like a priority over the GP appointment, but I do get your point......it shouldn't be this complicated to be seen!

We only have two GI practices in my town and they both suck, so I don't have any motivation to switch. At least with my GI, he eventually calls and I can speak directly to him. I hope today goes well for you!

Well folks, something went right for once :p

I did see my GI. I even found a space straight away in the notoriously too-small hospital car park, which is almost a bigger achievement than getting to see my GI. The appointment reminded me of why I still stay at this hospital - my GI is a really good doctor, easily the best one I've had for Crohn's. By miles.

Edit: Oh ffs. I had to interrupt this post to dash to the toilet and had a small accident on the way. My trousers are drying over the radiator as I type. Told my GI how much better my urgency has been as well. Still, for the most part it's true - the godawful, hideous, relentless tenesmus has gone, but I still get one or two major urges a day.

Anyway back to the appointment. For reasons that are a bit long-winded to go into, I had wanted to go on 6MP in preference to azathioprine. There seems to be a bias towards prescribing azathioprine in the UK, but I didn't even have to bring it up in the end. My GI said he'd rather I go on 6MP and described it as a less harsh, 'cleaner', drug than azathioprine. He's starting me off on a very lose dose of 25mg. Even more amazingly, my local pharmacy had it in stock, so I don't have to spend two weeks chasing it up. He's also prescribed me two months' worth of Entocort. I got the impression that tapering people off Entocort has stopped being a standard policy, but he was happy to prescribe me additional Entocort so I could do a taper off it instead of stopping cold turkey after 2 months.

I also asked about the biologics. He didn't think I'd be a candidate for them right now, but said he'd be happy to put me on one in the future should I need it. They do have Entyvio and they'll be getting Simponi soon. Obviously I hope the 6MP works, but it's nice to know I can go on a biologic if it's needed.

I made it back in time for my GP appointment. Wasn't as happy with how that went. I still miss my old GP to be honest: he had the gift of the gab, while the new one hardly speaks. She's also boringly conscientious and had to have her arm twisted just to prescribe me 7 zoplicone: my old GP gave me 28 zoplicone a month and I'm still here and not in a rehab centre for drug addicts.

PS: I saw two doctors today and I managed to forget to ask both of them about blood tests on 6MP. My GI will probably bring that up in his letter to the GP, but I think I'll just go ahead and start the 6MP without a blood test schedule anyway. Just have to hope I don't get pancreatitis in the meantime #thuglyfe

Post Edited (NiceCupOfTea) : 3/31/2016 1:30:58 PM (GMT-6)

Yeah, it sounds like a really good visit! Are you talking about the tmpt blood test for the 6MP? I had good results on that but still immediately had elevated liver enzymes when I took the 6 MP....so maybe just taking the meds is ok. Have you decided for sure to go to Spain? When are you leaving?

I'm sorry about the depression. I wish I had some great advice, but it's not coming to me. Just know that I care about you and I think you are highly intelligent and I do think you are selling yourself short.

I agree that you should have regular monitoring blood tests with the 6MP. Is that something you can call and ask the IBD nurse without needing another appointment?