Where I'm at now (because you know you want to know ¬_¬)

I haven't been here for a while, so I suppose you folks missed my latest fun-filled, thrilling flare-up. Easy enough for me to remember when it happened, because the worst of it coincided with the Queen's Jubilee weekend, which in this case went on for 4 days. Literally couldn't have timed it better. The NHS basically shuts down all but essential services at the weekend, so I saw out the flare up at home with painkillers but it was horrible. Zillions of toilet trips (frequently barely passing anything) and pain which had me groaning on the floor much of the time.

Finally my parents took me to A&E on Tuesday. Far be it from me to pass judgement on my fellow human beings, but I seemed to be the only one in that place in pain -_-. Still, 3 hours later I got to see a doctor, who ordered a blood test which showed a CRP of 179. He didn't seem fazed by that and sent me home with a prescription for Pred and Codeine.

Pred did its job, although I suspect the patch-up job is temporary. On 20mg and already the low-grade fevers have recently returned.

Saw my consultant last week. Going onto Humira in place of the Remicade next month, as it's pretty obvious the Remicade is not doing a thing any more. Partly blame myself for that, as I was never on a concomitant immunesuppressant such as AZA. I should've been, as it apparently helps to prolong the development of antibodies, but I didn't want to be on two immunesuppressants simultaneously. I still don't really, but if that's the only way to stop your immune system from developing antibodies to the biologic, I guess I will do so.

I also talked about MAP with him. If you don't know already, MAP is a bacteria which has long been implicated as a possible cause for Crohn's. I had thought that theory was dead in the water, until I saw new evidence otherwise, and so became interested in it.

Long story short, my consultant agreed to let me try anti-MAP therapy if I want to. It involves a gruelling course of triple antibiotics. I will give Humira a try for a couple of months and if that appears to bring no joy, I'll try the anti-MAP antibiotics.

Oh yeah, I also spoke to the colorectal surgeon again a few weeks ago. She was as formidable as ever >_>. Still think the only thing she thinks I should do is have my colon removed, but she did concede that I could have it done in two or even five years' time, and not straight away.

That's about it for me. Hope you're all doing well :p

Hey, that's really exciting. Was this the whiz-bang super-duper doctor in London?

Wow. That's amazingly innovative of a regular consultant, then. Do you have a starting date for your Humira? I think you'll find it much easier: no more long trips to hospital; no more long days being infused; less time to sicken between doses.

Hey, NCOT, glad to see you back. I'm sad that you continue to flare and frustrated that nothing seems to be helping. Is the remicade giving you an allergic reaction? Or have you built up antibodies? Is that why you're switching? Don't people just try to move the infusions closer together or up the dosage?

It's great that your consultant was open to the anti-MAP therapy. I'd like you to propose worms to him too! That's the most exciting development IMO. Ha!

Hi NCOT

Do you live in England? If you are looking for possible treatments then I suggest you look into : Apheresis- adacolumn leukocytapheresis. Just a tips. Have helped me in remission twice now. As with the rest of all treatments It´s no cure but at least in my case I felt like I had no CD at all for 9 months before it came back again.

Hope you have good respons from the Humira :)

let us know how it goes.
Take Care!

Hi again

Now I´m a happy bunny to
Most of the times I mention it no one knows what I´m talking about or thinks it´s some kind of odd thing or that I´m some kind of advertiser for it

Here the GI´s aren´t convinsed and the method cost a bit so they offer things more traditional even if they also cost a lot before they even think of the adacolumn. And there are to few studies they say. Personally I don´t care the only thing that matters for me is that it works for some of us! You know I have tested most things and have either got sideeffects or no effect at all so when this worked I was the happiest bunny in the world!

You have to repeat it as I said the CD comes back-it´s no cure. But it´s wurth it living like a normal wellbeing person not feeling the tummy at all for severel months. And now I have had the apheresis again waiting for it to kick in again :) and then perheps more then a year of feeling fine again.

Good Luck! Let me know how it goes.

Would the NHS pay for you to have worms?