Hello

[Carrie]

I have been reading the forum on and off for a few weeks now, and I recently decided to join since I have gained so much information so far, and I am eager to share what I know too.

I was diagnosed with Crohn's when I was five, and have had two small bowel resections--one in 1994 and one in 1999. From 1999 to 2009, I was mostly in remission with a small blip in 2003 when I transferring universities. That small flare was controlled pretty well with a course of prednisone and Remicade.

In summer of 2009 I had two bouts in the hospital with small bowel obstructions. Of course, the first one came about a day before I was supposed to leave on a trip for Paris (I guess it was better it happened before, rather than during the trip!). The second came only a month after the first. I was prescribed a higher, longer dose of prednisone and began treatment with Humira.

Unfortunately, all this came a few months before I was due to move to the UK (I am an American), and because of certain rules with the NHS, I was unable to see a consultant for the first 12 months I was in the country. Only recently have managed to see a consultant and get all the relevant testing to get me back on track with my treatment.

This most recent flare has been difficult for me to deal with because it's really the first major flare I've had to deal with as an adult. I don't have my parents here to ask all the tough questions, and ensure that I am getting the best treatment possible. Plus, I feel like I'm much worse at dealing with the tummy pain as an adult than I was as a child! I suppose trying to navigate a new healthcare system has made this journey any easier, but I can't say I have any regrets so far.

So far, the forum has been really useful in helping me figure out how to navigate the NHS, and what to expect treatment-wise in the UK versus the treatments I have received in the US. I look forward to learning more from other people's experiences, and contributing where I can.

 

[ameslouise]

Hi Carrie and welcome!

You'll get lots of good advice here both about NHS and Crohn's. I hope your move to the UK is a good one for you, and that you can get your flare under control quickly.

Good luck! - Amy

 

[Awbrey]

Hi Carrie,
Glad to see that you made it to the forum This place is a wealth of knowledge!!!

 

[xJillx]

Hi Carrie and welcome! I hope you can kick your current flare quickly. Are you taking anything along with Humira to give it the boot?

So, what made you move to the UK - business? I think it would be very exciting to live outside of the US. I hope you start feeling better soon, so you can fully enjoy it!

 

[bruscar]

Welcome Carrie,

Ah richmond a lovely part of the world, but not as good as this forum, haha.

Enjoy all of this forum, its full of motivation and guts !

Bruscar

 

[AndiGirl]

Welcome Carrie! I just know that you'll enjoy the forum.

 

[ruthyp]

Hi Carrie, i work in the NHS and even i find them hard to deal with sometimes.

Alot of gastro consultants are just trained to deal with general things, not really specialised in crohns. I was getting no where when i had my firsy major flare in novemeber last year, so i did some reading and found St.Marks in London, its an amazing hospital and they basically saved my life!

I suggest to have a look on their website and see if you can become a patient of theirs, you can still see your local consultants for check ups but to have St.Marks under your belt is incrediby useful!

hope you get all the support you need. we are all in the same boat here!
xx

 

[Carrie]

Cheers, and thanks for all the well wishes!

I've been on prednisolone for quite sometime in order to treat my current flare, but we all know how that story goes--once you start tapering, things start getting off-track. I'm hoping to begin tapering again soon, or at least by the time I get we get the Humira situation sorted (if we get it sorted!).

I was taking 6MP as well, but recently had to stop taking it because it was making my liver enzyme levels go nuts. I'm actually hoping being off the 6MP will improve how I'm feeling; so far I feel like I have a bit more energy and a bit less pain (though I can't say for certain whether those are related!).

I moved to the UK for two reasons:
1) My fiance is British and was moving back to Europe after his contract was up in America
2) I had a great opportunity to move for work which I couldn't refuse

Luckily, these things coincided, so it gave me an opportunity to see how I liked living and working here before committing to anything (we weren't engaged at the time). It's been a bit challenging at times, but I know I will always be able to look back and say I have no regrets for taking this opportunity. Plus, it's only fair that I spend a few years living in the country where my boyfriend grew up after he lived in my country for a few years.

Ruthy, thanks for the tip on St. Marks--I shall keep that in mind if my consultant proves a bit useless in the coming months. So far, I'm actually having good luck with him (fingers crossed!)--he's one of the most accessible GI docs I've had in the 23 years I've had this disease.