Getting my head round crohns

[Julief]

Hi all
My name is Julie and I have only been diagnosed with Crohns since February.
I am trying to get my head round it and still probably in denial.
I have just started azathioprine and have been experiencing a lot of nausea and now vomiting.
Does everyone get this and is it normal to feel knackered all the time?
I am looking forward to hearing from people mad find out whether things happening are normal or just me lol.

 

[laurac]

Hi, I was diagnosed in march, so like you haven't had much time to get my head round it! I'm on prednisolone, azathioprine and pentasa. I haven't had much nausea but am always exhausted!

 

[Julief]

hi Laurac
I have finished the prednisolone and had a bad reaction to the pentasa so now am on azathioprine. I am not sure if that is causing the nausea and vomiting or the crohns itself is or something else.
My head spins with all this and already I am fed up feeling so tired and low.

 

[upsetmom]

Hi Julie

My daughter also had a lot of nausea at first. We controlled it by taking nausea tablets and the aza just before bed. It did settle down after a week or so. Good luck, l hope you feel better soon.

 

[caity52]

I also haven't had much time to get my head around being diagnosed with crohns as it only happened a month ago. I was started on azathioprine too, except have been taken off of it due to extreme side effects. One of them was vomiting acid and blood which lead to a hospital stay of 5 days. At first I found taking tablets to help control nausea helped a lot, maybe you could look into that?
Good luck

 

[24601]

Julief,
some people do have severe side effects on azathioprine - which may or may not be able to be controlled and in some cases necessitate stopping the medication (and moving to another med). Do make sure your doctor knows exactly what you are experiencing and the degree to which the side effects are affecting you.

It's really tough getting your head around Crohn's disease and everything that comes with it. The forum is great for talking to others who have been through the same thing and I think really helps! Welcome!

 

[dave13]

Welcome Julief

Have you checked out this support group? http://www.crohnsforum.com/showthread.php?t=47938 I agree with 24601 and urge you to keep your doctor updated,communication is a good thing.I personally do not have experience with what you are taking.

Wrapping your head around a recent diagnosis is something we all can relate to.Like 24601 said,talking with people in a similar situation really does help.We are all different is something you will hear on the forum.You will hear it because it is true,we are affected individually by this disease.It's all the different experiences that make the forum a great resource,in my opinion.

Perhaps the extreme fatigue support group may help with some questions you have. http://www.crohnsforum.com/showthread.php?t=57159

Feel free to ask me any questions.

 

[Julief]

Thank you all for your responses.
I have told my GP but they are concerned I may be starting with chicken pox so that is more of a worry right now.
Never rains eh?

 

[nitty]

Hi there,

Many people find that taking the Aza with their evening meal can help reduce nausea. After reading posts about it I have always taken my Aza that way and never had a problem, but perhaps I have just been lucky. It's probably worth a try though if you haven't already.

 

[Julief]

Hi nitty
That's when I take mine. I was thinking of changing it to bedtime to see if that helps. X

 

[nitty]

That may help. Remember to have a decent drink with it. I think mine says to have at least 200mls of water. That's the only drawback to having it right at bedtime - you may need a wee in the night!

 

[milohaze]

Hi, I would ask your IBD specialist if you where blood tested for Epstein-Barr virus (EBV) before starting Azathioprine. I was told it was fairly common with most EBV infections occuring during childhood causing only mild symptoms, or no symptoms at all so not rountinely tested - but it can be very serious if I caught while taking Azathioprine.

I was prescribed Azathioprine, but stopped after one the doctors contacted me after reviewing my previous blood tests and found I didn't have EBV. NHS here doesn't routinely test for it and it was only discoved from blood test I'd done for a crohns drug trial I've been participating.