Hello

[Brands]

Hi
I'm new to the forum but have been living with Crohn's since being diagnosed (eventually!) in 1999.

It all started with lots of blood in the toilet, stomach pain and severe backside pain! To cut a long painfull story short, I was mis-diagnosed many, many times (at one point I was informed that actually it was all in my head) by the good old NHS. It took a trip to a private specialist, one colonoscopy and a day later I was diagnosed. I was started on the usual suspects (steroids and Asacol) to which I responed well over the next few months. After about 7 months I was in remission and taking no medication and I thought that would be it.

A move to the USA in 2003 with work quickly brought about a severe flair up which again responded to the steroids. However it would come back with a vengeance as soon as I came off them. Lots of pain and a few unpleaseant surgeries later my doctor (very helpfull and knowledgeable) suggested Remicade. My first infusion was in early 2004 and since then you would not know I had Crohn's. Knock on wood I've been 100% well ever since. I do watch what I eat, and am very fit which probably helps. I can tell when I'm in need of another infusion (every 8 weeks or so) but I can't really explain why - I just don't feel quite right down below. A few days after the infusion I'm pretty much usless (more than usual anyway!) for another few days as I seem to get very tired and struggle from 4pm onwards. After that I'm back to normal.

I'm lucky that Remicade seems to work so well for me, as I've heard from others who have not had much sucess. I'd certainly be interested to hear from others who have experience with Remicade, good or bad.

Thanks

 

[soupdragon69]

Hi Brands,

Good to see you joining us! Sounds like you had a rough time getting sorted second time round.

I have been on Remicade since May last year and the gastro nurse told me not to make another app as I am getting 3wks relief instead of 6wks (6wkly iv's). They are going to repeat my scope and barium and are contemplating humira amongst other things. Time will tell. Have to say though the remicade is the only thing so far that has given me any improvement and increased my quality of life so am twitched about it stopping and keeping my fingers crossed they sort me soon!

Welcome again. Looking forward to seeing your posts on the other threads.

 

[Brands]

Hi, and thanks for the welcome. Actually one of my questions was the availability of Remicade in the UK. Although I'm happy living in the US at the moment at some point I'm sure I'll be back home in the UK, and one of my worries would be loosing my Remicade infusion. I'd hate to be back at square 1 with a UK doc, as I'm doing so well on the drug. Of course it costs me $2000 a year even with health insurance but I can't complain. I don't blame you for for not wanting to stop your infusions and I hope you can stick with it. My doc here has no plans to try anything else which suits me fine!

All the best
Ben

 

[jed]

welcome to the forums!

 

[Guest]

hi Brands, & welcome

oh i know that feeling so well, of being misdiagnosed & told it's in your head - i went through the same with my gp for years, he told me i had an active imagination. oh and then decided i had anorexia & sent me to a psychiatrist!

sorry to hear you've had a bumpy ride in the past, but it sounds very hopeful now that you've found relief with the remicade. i've never been on it, just using prednisolone right now, but i've heard success stories about it.

see you around the forum

 

[jed]

he told me i had an active imagination.

but that isn't completely untrue is it ding

 

[Guest]

but that isn't completely untrue is it ding

haha have we met?

i was a bit peeved when the gp said that - i was anemic at the time, with a swollen stomach, looked awful. i'd love to know how he thought i was 'imagining' all that to happen. the only thing he saw was that i wasn't eating - but it hurt to eat.

 

[Isla]

Well howdy ho Brands, hope you find a nice home here - I am starting to! It is always nice to be vindicated by science that you are not crazy.

Hey Ding - did your gp end up feeling like a sphincter-hole? Because I would love to run into my old doctor who treated me like crap for 3 years and tell her "You $#%#*% I can't believe that you #@$%$#%@#%$@#@#$%@#$@# $#%^%^#$@@#$!!@#$ YUUUOOOOOOO!!!!!!!!!!!!!!" (Ok I feel better now hehe)

 

[Guest]

lol Isla, you know what? i carried around a little grievous attitude to that gp for years & years, and then a while ago i bumped into him in a supermarket. he was becoming a little old man, retired many years by then - and i just said hi & walked on by... couldn't bring myself to upset the old guy. i believe in things happening for a reason, and in fate, and lately i've learned to not look back. if he had acted sooner, then yes i would have had a diagnosis sooner and medication, and possibly avoided the trauma of 3 operations in 4 days, nearly losing my life etc.. but then i would have had a life on steroid treatment, and not had the 20 years Crohns free that the surgery gave me, so... i kinda accept it all now.