• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Thank you to all, from a new member

F

Frezro

Hi
I was diagnosed with crohn's Feb 2012, and as with most stories i've read the symptoms can now be traced back much further. Since diagnosis i've used this forum to find information and advice on how to deal with syptoms and side affects. I've never been one to post any info on-line, i'm not a fan of social networking or the such. But have now decided its only fair i share my experiences of crohns as others who shared theirs have helped me.
From around March 2011 i had suffered from frequent diarrhea and as you do, you think it'll go away, so i put off going to the doctors till the point i'd started loosing weight and it was seriously effecting my work. GP suspected Gall stones i tried various medication nothing helped, was sent for an ultrasound, no gall stones. The pain and the speed of the NHS got to much so i paid for a endoscopy and colonoscopy in feb 2012 and thats when the diagnosis was made. Since then i've had three separate courses of prednisolone, along with pentasa, azathioprine and just reently stopped the azathioprine and am on mercaptopurine and domperidone for the nausea. Still not right but battling on.

The advice and stories i've read here have helped so much over the last year, thank you all so much for sharing your stories.
 
SarahBear

SarahBear

Moderator
Location
Charleston,
Welcome to the forum, Frezro! Glad you decided to join. :)

How long have you been taking the mercaptopurine? Do the steroid courses seem to help you feel better?

:hug: I hope you feel better soon!
 
F

Frezro

i've been on the mercaptopurine for 8 weeks now and am nearly off the steriods again. I've been lucky with the steriods, having a positive effect each time and so far i have not suffered the usual steriod side effect ie the round face and weight gain. i came off the azathioprine because of the side effects and two weeks after starting the mercap the nuasea started, the gastro put me on steriods left me off the mercap for a week and restarted with the domperidone. so far seems to have done the trick. still have frequent toilet visits, and some pain but tolerable now so work is easier.
 
Earnellzwifey

Earnellzwifey

Welcome and thank you for sharing your story. I was wondering if you are on a special diet such as low residue to see if that might help.
 
F

Frezro

no special diet although, there are certain food i steer clear of now. i'm glad you asked that question as i didn't really know what a low residue diet was so i've just been looking in to it. Looks like there's more i can try, so watch this space. I did ask the Doc when i was diagnosised if there was any dietry changes i should make, he just said if i think something triggers it stop eating it. so i've just been using trail and error.
 
superzeeman

superzeeman

Glad you joined us although wish you wouldnt have had to. You will find everyone supportive and no question or comment is off limits. Feel free to ask for all the help you may need. Hope you feel better.
 
P

Pawleyj

Hello & welcome to the forum.

I started on azathioprine just over a week ago, you said you came off them cause of the side effects, which ones? How long we're you on it & how long did it take for you to get any side effects. I feel totally wiped out!

Jess
 
F

Frezro

Hi jess
i was on the azathioprine for about 6 months, after the first 6 weeks i noticed some side effects mainly lack of energy and aching joints, but reading info on this site, i changed the time i took it. originally i was taking it first thing in the morning, when i changed it to last thing at night i felt much better, whether the side effects stopped or i just slept through them i'm not sure but for the next 3 months i was really good on it, life semed to be getting back to "normal". then around 5 month in the nuasea and vomiting started, the gastro seemed to think it was the aza so changed it to mercatopurine, which from what i can tell is basically the same drug without the extra rubbish. As far as i could tell they use Aza first as mercatopurine is more expensive.

Hope it works for you, i think feeling wiped out is one of the worst things about crohn's
:ybiggrin:
 
P

Pawleyj

Thanks for the info, so far so good I think. I'm taking it first thing, I'll see how I get on but I might change too. I've already caught a cold, the drs put me on amoxicillin to get over it as I've had it for almost 2 weeks now. Was that the case with you, catching colds ect and not able to shake them off easily?
 
F

Frezro

i've been lucky on the cold front until now, so can't really help, but on the mercaptopurine the cold is certainly hanging round it's been three weeks now. before the crohn's i had quite a strong immune system and was very rarely ill, so i think thats helped for me until now.
 
David

David

Co-Founder
Location
Naples, Florida
Welcome to the community. Thanks for letting us know the site has helped you. It's always nice to receive such feedback.

I pray that the 6-MP works wonders for you :)

All my best to you!
 
You must log in or register to reply here.
Top