Worried about ds taking Azathioprine for Ulcerative Colitis - any experiences or advice please

[Winetimeisfinetime]

My 18 year old ds is suffering with his first ever bout of inflammatory bowel disease which looks like it is Ulcerative Colitis but could be Crohns - we are still awaiting a final diagnosis. He was in hospital for 10 days on IV hydrocortisone, antibiotics and Asacol and has now been home for a week on Prednisone and Asacol.

The consultant told him whilst he was in hospital that Azathioprine was the next step for him and we have an appointment to discuss this further tomorrow evening. I feel very concerned about him taking Azathioprine because of the potential side effects and wonder if anyone could tell me of their experiences of being on it.

I am particularly worried about the increased risks of infections as he is due to go to University in September and will be far from home and exposed to lots of bugs and things. Also the increased risk of cancer is concerning. Any help or advice would be gratefully received as I am feeling a bit overwhelmed by it all.

Been signed off for a month now to get used to the drug and have some rest time if that is possible with the school hols soon coming!!!! ahh.
OldBagWantsNewBag Silly as it sounds its good to hear that you still pass blood as today the same happened to me and i thought "HERE WE GO AGAIN", but things still seem better than what they were. Do you find that the Azathioprine is working and i thought I was the only person who got tired, i can fall asleep half way through the day and that is why the doc has signed me off for a bit, along with sickness. No longer on steriods as of today lets see what happens.

OldBagWantsNewBag Your right about the steriods I too have put a stone in weight on and my face has gone round, however my steriod dosage was reduced over 8 weeks, starting on 8 Pred a day with 2 Aza then 7 and so on. I have just been steriod free for 2 days and I am totally reliant on the Aza. So far so good, yes I feel sick in the mornings and get a belting headache which last approx 2 hours but like you say my quality of life is 10 times better. I do lack in energy and hope the time off work will help (school hols coming up I am not to sure though ha). My bloods have said that my iron levels are on the lower end so I may look at getting something for this. My mouth is still sore even with the medication they gave me for it. I am now on monthly blood tests but everything was ok when I reduced my steriods this time with the Aza, last time I got down to 3 a day and my symptoms came back. I do hope the drug keeps on working for you and if it means taking 20mgs of Pred to give you that good quality of life so be it. I honestly don't feel that IBD is understood fully by others and get sick of people thinking you have IBS. Please keep me updated on how you are getting on and I will do the same.

OldBagWantsNewBag Well 2 weeks on the Aza alone and some of my symptoms are coming back. I have blood in my first stool in the morning and the urgency to get to the toilet is there again. I do still feel sick and may go and ask for some anti-sickness tablets. Currently I have a horrible virus which isn't helping matters. I just hope things don't back to normal. My appointment has been cancelled with my consultant and I have been told that they don't know when the next appointments will be (great hey). How are you getting on?

Hi OldBag,

Well my symptoms came back for a full two days and I just cried at the thought of the Aza not working, however after two days everything was great again (hows that happen)? I still have my virus and got some anti-biotics today from the doctor. I am seeing the consultant on Thursday to see what he says but believe me if I hadn't dug my heels in I wouldn't have seen him for another three months. We don't have a dedicated IBD nurse at my hospital (apparantly there are 13 other hospitals that don't) which is bad really as sometimes I think you can feel very alone. I am not taking any Vit C or zinc but will look into it now. How are you sleeping, any better and did you manage to get some tablets? I don't blame you for wanting off the steriods is there anything else they can do to get you off them? I am still very drained and may see if the GP will sign me off work for a bit longer as the virus has knocked me for six. Anyways take care and let me know how your doing.

Mary King's horse had colitis and is still in the Olympics helping her and team GB get medals. I would love to know what treatment and diet the vets gave that horse. Horses are vegetarian I believe.

Have had ulcerative colitis for 26 years. Started Imuran after a flare up and within 1 week I thought it was a miracle and still am going to the bathroom 2 x a day and sleep all night. I worry about the side effects but I have a life again for now. Thanks to Azathioprine

Am on azathioprine now and feeling tired. Wondering how everyone else is getting on?

funnyperson hi there, nice to hear from you. I'm doing great, still on the Mercaptopurine although my white cell count dropped to 2.2 just before Christmas & I had to stop taking it for a while. No flare ups or other problems even through the stress of being made redundant late last year. I'm now job hunting and me & DP are finally getting married in August after 20 years together .

Wonderful news about the wedding!

Thank you. What made you decide to try the Aza? I must admit I was very tired when I first started taking the medication but it got much better quite quickly. I don't have any side effects now & they keep a close eye on my bloods. Hope you feel better

Consultant advice and an abnormal colonoscopy.

Hi all,

apologies, I feel a bit of a fraud posting here as I'm not a Mum, in fact not even a parent! Although as a primary school teacher I do feel having the welfare of 30 little ones gives me some right!
I'm 34 year-old male with UC and am currently signed off whilst waiting to get on Azathioprine. I was diagnosed a few years ago and for the first couple of years asacol and steroids pretty much kept my condition in check but the last year has been unbearable. I get sick, take steroids, get better, come off steroids and immediately get sick again. It's meant life has just been on hold because its impossible to teach when A) you need to dash to the loo mid lesson and B) I get so sick and weak I'm virtually useless anyway. From what I've read Azathioprine, despite its side effects like getting sick and mouth ulcers, seems to have a good success rate for most people. I really hope it does for me as I've no idea what I'll do otherwise. I'm ready to put up with the initial side effects but wonder what will happen when I come off it. Will it just mean I'll go backwards again? Will see. One thing I have found with UC is that its very closely linked to stress, I tend to get worse if I've had a few weeks of intense workloads, which as a teacher is most of the time. I've also tried changing my diet (no dairy, wheat, etc) but haven't found it makes any difference.
Anyway, many thanks to those that have posted their experience of being on Azathioprine. Its mean I feel more prepared for the downsides and more hopeful for its success.
Will post again in a few weeks to say how I'm getting on. Fingers crossed!

Oh and I meant to add. My new specialist (I had to change from my first one because he didn't fill me with any confidence) gave me foam enema steroids instead of oral ones. It's not nice to have to do and they're not quite as powerful as the pills but you don't get all the horrible side affects like sleeplessness and mood swings. I recommend.

definitely push specialist to optimise your medicaition and consider infliximab as you shouldnt be off work at your age in this century
also try asking work for 'adjustment' for your colitis- there is employment law regarding long term conditions- you may for example be able to work mornings only etc