Hi everyone!

[Echoes]

Hello, only just discovered this forum but have been living with Crohn's for over 20 years.

Its been quite a journey so far, what started as a bad cough and severe weight loss, followed by a year of tests and examinations before a diagnosis of Crohn's was made.

Since then I have had multiple surgery's and an Ileostomy since 1993. Despite this the disease continues to flare up and currently I am taking Humira for inflamation in my duodeum. This had been working very well, but recently has become less effective and my Doctors are now thinking about alternatives. They have asked me to consider the ASTIC trial and it was when researching this that I found this forum.

Despite these little hurdles I have always tried to enjoy life as best I can and have also been fortunate to have an employer who has been very understanding of my illness.

Have to admit though that it has been getting to me a little these past few months. Just frustration that yet another med is now no longer working. Something that I am sure many of us can relate to.

Well thats my short introduction over! Look forward to meeting many of you on the forums!

 

[Nica]

Hi Welcome to the forums!

I am sure that we can all benefit from your expertise on this lovely disease. Very nice to meet you!

 

[Astra]

Hi Echoes
and welcome fellow Brit

Did you find Mr. Ziggy's Thread on Stem Cell whilst researching? it's a crackin read!
If not, use the search button up on the blue line
Stick with us, lots of friends here for you
lotsa luv
Joan xxx

 

[crazycanuck]

Well hello there and welcome to the forums and who knows maybe that trial could be the drug to put you into remission forever? Best of luck with whatever your next step is!

 

[Entchen]

Hi and welcome!

 

[Echoes]

Many thanks everyone for the warm welcome!

Thanks Joan, I have read Mr Ziggy's thread. It's a fascinating read and has made me think about this route more closely.

Best wishes.

 

[Kers]

Hi Echoes,

I'm also in the Highlands. I've not been on the forum for a while due to the crohn's playing up major style.

I got word today that they are referring me eventually. Just wondering where you are as far as referral is concerned?

There is no other options left for me and apparently surgery is not an option. My consultant is Dr Potts. He told me that NHS Highland were reluctant to pay for treatment and only 1 patient out of the 10 that were referred is on the treatment trial.

I really hope I can get on to it but it would be cool to hear your experiences.

Kers

 

[Echoes]

Hi Kers, sent you a PM

 

[Crohnsian]

Hi Echoes and welcome - bang goes my theory about crohn's and air quality, cant get much cleaner air than the highlands eh!

keep us posted on the trial...

Ian

 

[Echoes]

Thnaks Crohnsian, yes so much for Highland air- I think the opposite is true as there are quite a high number of Crohn's cases in this area.

Not on the programme at the moment as the Humira seems to have started working again and my symptoms have eased. Will be watching it closly though as it seems the most exciting breathrough so far.