Hello! **waves**

[deedee]

Hi everyone,

I'm so glad I found this forum! It's so great to know that I'm not alone.

I just got diagnosed with Crohn's last week. I've been sick since about February, but unfortunately had a doctor who told me it was all in my head. I ended up in the ER a few times, but had trouble getting someone to believe me. Luckily, someone finally did. They then found 3 anal fissures and a perianal fistula. A recent colonoscopy confirmed Crohn's. It sucks, but I'm just so relieved to have a diagnosis and be on my way to feeling better!

I started 6MP next week and am starting Remicade in 2 weeks.

I'm looking forward to sharing experiences here Hope everyone is feeling good today!

 

[Guest]

hi Deedee - welcome to the forum!

i would be so tempted to go back and tell that doctor he was about 3 feet wrong... in your head indeed!!!

i had the same rubbish said to me for years by our family gp, so i know how frustrating and demoralising it is to know there's something wrong & have someone say there's nothing... really glad you finally got your diagnosis, although at the same time i'm sorry you have Crohn's.

anything you want to ask, go ahead - we're completely used to all kinds of bowel talk here

 

[EthanPSU]

Hey, Welcome! I hope remicade is as good for you as it is for me, I am going for my 3rd infusion in a couple of days and it has been great so far

 

[Astra]

Hi DeeDee
and welcome

where are you from?
I got the old 'you're depressed and mental' thang too!
glad you found us too! lots of friends here for you, you're no longer alone!
good luck with the Remi
lotsa luv
Joan xxx

 

[deedee]

Thank you for the warm welcome!

Astra - I'm from the US but actually living in Europe for the time being (although in the US at the moment...it's a little complicated!)

 

[DustyKat]

Hi deedee and :welcome:

It's good to see you here. This is a great place with loads of friendly and experienced people. Please keep us posted on how you are going with the meds. There is a Remicade Club here that you might like to browse through......

http://www.crohnsforum.com/showthread.php?t=4544

Welcome aboard!

All the best,
Dusty

 

[Entchen]

Hi, DeeDee, and welcome to the forum! Lots of us here are members of the "you aren't sick, just stressed and mental" club, so you'll fit right in just fine. (For me, that was the worst part of being sick pre-diagnosis.) We're glad to have you aboard, and I hope that you will find lots of helpful info and support from the forum. See you around!

 

[EthanPSU]

Thank you for the warm welcome!

Astra - I'm from the US but actually living in Europe for the time being (although in the US at the moment...it's a little complicated!)

Lol, Made me laugh a bit. So you are living in Europe but from US but in the US? That is complicated

 

[deedee]

Lol, Made me laugh a bit. So you are living in Europe but from US but in the US? That is complicated

Haha! Yes. 'm just in the US for the summer. So you can see it as I'm from the US but living in Europe. I'll be back in Europe soon!

I'm glad to hear the remicade has been working for you, it's really encouraging to hear that! I hope it works for me!

 

[Sue]

RE: mental indeed!!!!lol

Hi deedee Wecome :ysmile: not been on here long myself but it brill, If you mental we all are because I was also told it in me head lol took um 7 YEARS to find Crohn's!!! bloody stupid some of these doctors!!!! 7 years of pain and suffering and I had two young children to bring up, god knows how I did it!!! My mum helped lots thank god!!! Anyway c u around good luck with u meds xx

 

[Dexky]

Hi DeeDee, and welcome!! I'm curious about a couple of things. My son is on 6mp and we were told it can take up to six months to sufficiently get into his system. I'm wondering if your doc intends to keep you on both 6mp and Remi at the same time. I don't think I've seen anyone on both at the same time. Then again, it could be common and I've just missed it. I don't know how they will know which is doing what.

Also, if you start Remi here in the states, I am curious about what kind of coverage you have in Europe? Does the same insurance pay for both?

Sorry to be nosey!!. Hope it all works out for you. Glad you found us and stick around!!

 

[deedee]

Dexky - to answer your first question, my doc explained that being on 6MP (or azathioprine) while taking remicade often helps the remicade work better. I think it's pretty common to be on both.

as for your 2nd question, the gov't pays for everything! woohoo! You can get secondary insurance but I don't have any. But it shouldn't be a problem, basically as long as the dr says you need it, it will not be a problem.

ETA: You can't read more than the abstract unless you have a way of getting access, but here's the abstract from a recent article in one of the top medical journals regarding your question: grrr it won't let me post a link. the name of the study is Infliximab, Azathioprine, or Combination Therapy for Crohn’s Disease, published in the New England Journal of Medicine.

 

[Astra]

Hiya deedee

Azathioprine is not 6MP (mercaptupurine) they are both immuno suppressants, some people can experience side effects from Aza, and in these cases, 6MP can be used as an alternative, both work on the principal of dampening down the body's immune response.
Sorry, not being pedantic here!

What you're talking about is called the 'step down' approach - an immuno supressant with a biologic ie Remi or Humira, 'The Lancet' medical paper says this is more effective rather than the 'step up' approach - Pred to control pain and inflammation, then a biologic, Remi.
xxxx

 

[deedee]

Astra - sorry, should've been more clear! What I meant was that taking any immunosuppressant (aza, 6MP, methotrexate) often helps the remicade work better. My doctor told me that 6MP and azathioprine are essentially the exact same thing. Your body metabolizes aza into 6MP. But for some reason, people react differently to them.

I was wary of this approach at first, but after thinking about it a lot, I like the idea of throwing everything at the inflammation at first to get it under control!

Thanks again for the warm welcome and interesting discussion!

 

[Astra]

ha ha ok thanks Dee
and besta luck with your treatment hun!
xxx

 

[stormy]

Hello,

I take both azathioprine and Remicade. I have had no problems and i've benn doing it for a year now. But everybody is different. good luck

 

[Crohn's 35]

Hi Dee dee welcome! I have a sister name Deedee. Glad you found our community, I can see many have helped you. I tried Remicade and 6mp but became allergic. So many here have been on them and have done well. As stormy mentioned we are different in meds and the disease as well, so we all have our own trial and errors. Everyone's mission is the best results with the least drugs. Welcome to our family!

 

[massa]

Hi Deedee
I'm newish to this too .... lol
I was told way back in 1982, that at aged 18they said i was depressed ... Had all the usual symptems us Chronies get.... I had a great job with the elderly.. now how can i be depressed i said !!!

II also was russhed into E.R.. after having all the tests, i was Diganse with Crohn's had 3 ops and getting my 4th on 20th August....

I hope you can get well soon, take care
Marie
( massa)

 

[Dexky]

Dexky - to answer your first question, my doc explained that being on 6MP (or azathioprine) while taking remicade often helps the remicade work better. I think it's pretty common to be on both.

as for your 2nd question, the gov't pays for everything! woohoo! You can get secondary insurance but I don't have any. But it shouldn't be a problem, basically as long as the dr says you need it, it will not be a problem.

Do you have dual citizenship? What country in Europe are you in?

 

[jhill]

You definitely are not alone.