Newbie and all a bit scared and overwhelmed!

[eclaires]

Hi, please excuse my splurge of info, have been trying to find somewhere I can talk to people who understand and as lovely as I'm sure my crohns nurse is she can't be there when sometimes you just need to chat!
I am newly diagnosed although have been suffering wiv what they called 'IBS' for 15 yrs at least! The past 18 mths 2 yrs though have been really bad. I lost 2 stone despite eating everything I could get Dmy hands on and when I finally gave up and admitted the truth to my GP... To cut a long and rather invasitory story short, here I am, diagnosed! I refused steroid treatment for personal reasons... See my other post if u wanna know why... And have been put on infliximab with the Idea of concurrent azothiaprine (spelling?) if I respond! All so much so soon really! I live on my own and although my dad has illiostomy due to UC so understands personally he's miles away so it's not the same as having someone there to chat to when you need to!
Just glad I found this forum, do hope I've not splurged too much info on my first visit bit I do know we're all in this unfortunate boat together x

 

[dreamintwilight]

Welcome to the board (officially!) Don't worry about "splurging" too much. You will find quickly that we are very open here, which is great! Glad you finally got your diagnosis. That's the biggest step! I am taking Humira (similar to Remicade) and should be starting Imuran (azathioprine) soon. It seems to be a popular med combination. Hope the remi works so you don't have to worry about steroids.

I have found my greatest support has come from this forum. So many great people with plenty of love, advice, and insight. Feel free to vent and post and use the Tags thread at the top to find other threads on topics you are interested in. There's LOTS of info on here. Glad you found us

 

[Entchen]

Welcome! Glad you've joined the forum.

 

[HospitalPatient]

Newbie" - DON'T be Scared.

For any 'Newbie" - DON'T be Scared.

May 26, 2010

Greetings everyone.

I’ve had Crohn’s Disease for approximately 25 years (I’m 47 now) and it’s been a rough road - but everyone's "journey" is different. I’ve been hospitalized over 100 times, had 10-15 Major surgeries, experienced almost every conceivable side effect and been on almost every medication (presently on Cimzia). However, had they invented Cimzia, Humira, Remicade and the like when I was 21 - I doubt I would have ever even been operated on - so - all NEWBIES should be POSITIVE.

I’ve gotten through it via the support of my Friends and Family and I eve wrote a Book about my Crohn’s Disease story and somehow I landed on NBC’s “Today Show” with it and MANY people have found it to be informative, engaging, funny and inspiring.

Lately, because I am presently out on Disability and trying to make the most of my “down-time,” I started recording “Helpful Tips” type Videos re: Crohn's Disease on You Tube and the response has been incredible (please don’t judge the present viewing numbers as being demonstrative of accurate numbers because I accidentally deleted ALL of the Videos last night and am in the process of adding them back in again). One Video which I think you will all relate to is:

“The Emotional Effects of the ‘Diagnosis Journey’” (as I am not permitted to Post Links ??) as I hear too many stories of patients who go YEARS being misdiagnosed or mistreated by doctors who don’t see many Crohn’s Disease patients and thus treat the patient “by the book” – when the “book” – is not the correct Treatment Plan.

 

[semicolon306]

welcome and know we are here for you

 

[BLM]

Welcome Newbie, I am a Newbie too! Im so glad I found this site, as I have done more research here and recieved more answers here than anywhere else. The people here are real and understand my problems like nobody else I know....they are a great support team. Good Luck to you, and Welcome!!

 

[cins]

Welcome i'm new too! I too have refused steroids. I'm on pentasa and at the moment feeling well. Better then I have in the last 7 years.

 

[belle1999]

welcome, newbie. I have been a member on the forum for a short time. spent more time lurking and reading than participating. but i have found that i get a lot of comfort from reading others posts and knowing that i am not alone. i hope that you find some comfort here, too.