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.

Sigh. Most intolerances do not need food group elimination, just reductions/manipulation which - as I already said - is fine. It is the complete elimination of food groups that is potentially dangerous especially in an 18 year old. You'll notice that the NACC leaflet highlights the additional risks of dietary deficiency in children & adolescents and advises that, whenever possible, they should be eating all food groups.

My original comments were not about flare ups but about general management of UC. Of course anyone with a flare up may be limited in what they can eat but adolescents should still take medical or dietician advice before cutting out any food group for more than a week or so. An adult who is previously well-nourished can safely miss out most food groups for a bit longer but still needs to be careful. Some nutrients such as vitamin C cannot be stored in the body and deficiencies can occur very quickly.

In any case, as I keep pointing out, I am not saying don't eliminate foods, only don't eliminate them without specialist advice, especially in an 18 year old.

AnyoneforTurps - genuine question (I am not being arsey!) what do you suggest for me? My consultant literally said that if I don't want to eat wheat/gluten then don't eat it

I do not want to constrict my diet, I have found that being mostly gluten free improves my health. (oats seem to be fine) but I also do not want to take my health into my own hands.

winetimeisfinetime how did your son get on at his appointment? I'm surprised that the consultant doesn't like questions - mine loves me asking questions & I learnt so much about the disease from him. The IBD nurse is really helpful as well but she is more knowledgable about medications etc. Maybe a second opinion would be useful - don't know how feasible that is for you. Having spoken to several people both online & in rl I'm very aware that I have a fantastic team looking after me.

I think my motivation in taking the immuno-suppressants is the fact that you can only have a certain amount of steroids during your lifetime & I'm only in my early 40's so don't want to 'run out' if you see what I mean. If I was as young as your son I would certainly try them - my symptoms have almost completely gone now.

I also asked to be referred to a dietician while in hospital & found her advice invaluable - I now try to eat low residue (low fibre) if I'm having symptoms or pain & find that cutting the fibre out for a few days really does help.

Thanks for all of your replies.

In response to a few of the points - Dh and I are very aware that ds has a right to speak to the consultant privately but the consultant wants us out of the room even though ds tells him that he wants us there. At the minute it is all a bit much for ds to take in and he feels he needs the support of someone else hearing what is said and potentially asking pertinent questions. To the consultant because ds has now turned 18 then he ought to be able to deal with this himself which quite frankly neither I nor dh would want to have to do on our own , even as longstanding adults, especially when ds was acutely ill and there was a significant chance that he could lose all of his colon. Perhaps he does need to grow up but, to us, this doesn't seem to be an appropriate situation to expect him to deal with on his own. The fact that the consultant is so difficult and we know that we will have problems with him and that he wants no input from me or dh has just makes things even more stressful for all of us. He does have a bit of a reputation and we encountered another set of parents who had been sent out of the room of their teenage son who were absolutely fuming and were planning on reporting it to PALS. Ds now knows how to react and just says he wants us there and we stay put at his request but it always feels like a battle that we shouldn't need to have. It has also made us feel that we need to seek a second opinion from someone who is more willing to engage and we are actively seeking another consultant who might be a bit more progressive in their thinking.

Dietwise we were surprised that the doctors don't feel that it is particulrly relevant. We asked to see the dietician before ds was discharged and the basic instruction was to avoid insoluble fibre as much as possible. Also that dairy was important because of the calcium but ds feels that dairy does make his symptoms worse at the moment so we are being cautious about it. Certainly when he was younger after any bout of d & v he always became lactose intolerant for weeks afterwards. He is trying a few days off it to see what effect that has but is on a calcium and vitamin D supplement from the hospital and is also having calcium enriched oat milk in the meantime, but we are very aware of being careful that he shouldn't cut out such an essential food group for any length of time. I do wonder if diet does play a much bigger part than the drs here seem to think and have been reading about the Specific Carbohydrate Diet and wonder if anyone has tried it and what results they had.

I am heartened by people's experiences of Azathioprine but when I read things like this from Wikipedia 'Cases of hepatosplenic T-cell lymphoma - a rare type of T-cell lymphoma - have been reported in patients treated with azathioprine. The majority occurred in patients with inflammatory bowel disease. Adolescents and young adult males were the major cohort of cases. They presented with a very aggressive disease course and, with one exception, died of the lymphoma. The FDA has required changes to the labeling to inform users and clinicians of the issue' from here and the FDA saying that the safety and efficacy of Imuran for the treatment of Crohn's disease and ulcerative colitis have not been established here. It does seem that the cancer risk is more significant for adolescent males which obviously increases our anxiety - can anyone put this in perspective for us ?

The appointment last Thursday was a bit of a damp squib in the end MrsPinotGrigio as the consultant hadn't had any bloods taken since ds had been discharged and as looking at how the inflammatory markers are doing seems to be the main thing he is concerned about then there wasn't much he had to say. He seems fairly uninterested in how ds's bowel movements etc are and just reduced the steroid dose and said he needs to come back again this week ( tomorrow) after having had some bloods taken. He did say that he would leave the issue of Azathioprine for the moment as he had originally wanted ds to start it at this first outpatients appointment. He did also say, that I felt was quite significant, that ds might be one of the lucky ones that 'might bumble along with only the occassional flare up just on Asacol', which makes me question even more the neccessity to start Azathioprine before knowing what course ds's illness might take.

Sorry this has turned into such a epic post !

Think azathioprine is much less likely to cause lymphoma than you perceive.

Think you sound very anxious indeed and that may not be good for your DS.
(and you will probably not like that I said this)

Remember as his mother your role is to keep calm, and not generate battles with his consultant who sounds perfectly competent tbh. What are you going to achieve by your complaint? Its best to relieve your own stress and anxiety in a more constructive way. Show DS how calm and constructive you can be in consultations, and not slag off his consultant even remotely in front of him. At the end of the day your DS has a lifetime of a doctor patient relationship ahead, not you.

You need to give the docs a chance to observe how your DS is responding. There is no hard and fast prescription as to what treatment should be given as every person is an individual. If Doc says azathioprine is the thing then support DS in going for it.
If doc says its not needed at this stage then support DS in managing his tiredness.

Hi all, just thought id add my bit, and maybe someone can offer up some ideas?
My dd is 15, and she was diagnosed with UC when she was 12, she had to have a very heavy dose of steroids, which bloated her right up, and her 13th birthday party wasn't great for her.
Anyway, she's been on asacol and azathioprine now for coming up to 2 years.
She has had no flare ups since, and is the picture of health, but I would like to think that in the next year or so they might wean her off the azathioprine, ( she's on 125mg daily).
Anyway, my hubby has just been diagnosed with colitis.
Both dd's and hubby's consultants are pondering wether there is some genetic link here, has it lain dormant in hubby for years?
He suffers more when he eats bread or pasta so they are testing him for coeliac, and he doesn't eat much bread now, but hasn't cut it out completely.

As an aside, one thing that always bothered me, probably utterly irrelevant BUT....
When dd was 17 months old I was diagnosed with non hodgkins lymphoma, and I was desperate for some reassurance that the NHL hadn't been laying dormant in me whilst I was pregnant, and therefore passed SOMETHING to dd.
Everyone thought I was insane at this thought, so, am I?

No idea. There are lots of genetic studies being done now that the genome has been sequenced. In a few years time all will be much clearer.
Colitis runs in families. My children are worried they might develop it and I am worried they might develop it. Though in a way they also know how to manage it so it wont be as much of a shock.

Hi funnyperson - I appreciate what you say about my anxiety not being good for ds and it is a very valid point. I am very aware that stress plays a part in UC and very much try and not show I am worried in front of ds but obviously he knows me well and can probably see even when I am trying to hide it. It is difficult as there are things that all of us, including ds, feel need further explanation and this involves asking the drs questions that potentially have answers that are worrying. I don't know if other people would just put their trust in the drs and accept all they say without question. My experience has been that it is more productive to be as well informed as possible and that has lead to more positive outcomes for me when I have been ill. But I know this does make things more stressful as you can worry about things that won't end up being relevant.

We do have faith in the consultant and most importantly ds has faith in him but we still feel that we need to understand what he is advising and what alternatives there may be and now ds is feeling a bit better he is the one who is taking the lead in consultations and asking the questions. I think you have misread my previous post as it is not us that are making a complaint about him but some other parents that we met in the hospital. We find his methods difficult as it at odds with our need for information but we understand that he is doing his best for ds but wonder if a dr with a more open approach would be better.

Mairyhinge I am glad to hear that your dd is stable on Azathioprine. There does seem to be a genetic link for some cases of UC as the hospital wanted to know if anyone else in the family had it and as funnyperson says there is currently research going on into this. I had a very mild bout of colitis several years ago so did wonder if that was linked to ds having UC but to be honest I had forgotten about it as I have had no problems with it since. So there may be links with your dh having now developed colitis. It is horrible to think that you have passed something on to your dc and I have no idea about NHL but if you are worried could you talk to someone about it ?

Thats OK wineisfinetime dialogue is always good. I think its great you want to be as informed as possible and understand what is going on as much as possible. I sympathise with you really I do - its such worry when the DC are ill and especially these long term conditions when what ever the docs say and however good the medicines are the fact is there is no cure and DC are going to have to manage it for life, and all the medicines have some side effects. Its a big mind set change.

Some of the braver people I know just plug on with their high achieving lives regardless. I make allowances in my own life. But I still have a full time job. Its just a less stressful job than it otherwise would have been. NB Your DS doesn't have to mention it at all when he applies for jobs. Once he has got the job he can tell occ. health if he needs to. He should also be able to carry on as normal (with loo access) at uni, once he is over this bad patch. He will feel less tired when he is better. Colitis is always worst at the beginning.

I think that if azathioprine works it could transform his life and he will be well monitored and receive good care. I would be worried about focusing on the (very small) risk of lymphoma as leaving the UC untreated would carry a higher risk of colorectal cancer. There is no nice solution, but being monitored does reduce these risks from the stark figures you read in journals to even smaller levels.

I was reluctant, at 19 with UC, to take what I then thought of as hardcore drugs. I now take something much stronger for Rheumatoid Arthritis and have had the surgery for UC, and live a completely normal life, pretty much never thinking about my bowels or joints - honestly, once you are out of the flare up and have adjusted, you can't really see what you were so worried about (although it is completely normal to be worried just now). Good luck to your DS and the rest of your family.

I don't know about anyone else but I don't really trust the info on Wikipedia regarding health problems - don't know why but I prefer to use the NACC website. I think their information leaflets are really good & the hospital I'm under actually give out copies if needed.

winetimeisfinetime I can't see you & your husband going to your son's appointments with him as a problem as long as your son doesn't rely on you to ask the questions & do the talking for him - I know what teenage boys can be like. Personally I always take someone with me to my consultants appointments - usually my Mum or DP. I think having someone else there to listen as well helps & the support is good. My consultant likes to see the family as he is very concerned that I have a good support system around me. Most of the other patients have another person with them as well so the waiting room is usually quite full!!! Mum & DP don't say much but it helps me to know that they are in the room with me. DP came with me today as I was going to find out if I need surgery -I don't thank god- but I needed a hand to hold.

I really hope your son manages to keep the UC under control & gets to uni later in the year. Good luck to you all.

Hello,

I have been taking Azathioprine tablets now for 4 weeks along with the steriods and Asacol. I have to say that with the exception of being tired I have had no side effects at all and I hope as I reduce my steriods the Azathioprine helps. I am due a bone scan very soon and I am carrying on with my weekly blood tests. The blood tests are a pain but lets be honest with the careful monitoring we get we will know if something is wrong sooner better than later. If the drug doesnt work then I need to look at my quality of life, work etc and what to do next. Does anyone know if you can get medical retirement with IBD if its that bad as my occupational health at work have now classed it as an disability under employment law?

Thanks for all of your replies.

Sorry not to have been back to the thread but ds has not been too good since his steroid dose was reduced. Does anyone have experience of their symptoms flaring up again when this happens ? He was originally discharged from hospital on 40mg Prednisolone and that was reduced a couple of weeks later to 30mg and then again a week later to 20mg but at that point his Asacol dose was doubled to 400mg three times a day. Apparently the increased Asacol dose will take a while to kick in and as yet it doesn't seem to be helping.
The consultant he sees is now on holiday for 2 weeks so I phoned the IBD specialist nurses yesterday and they have said to see how it goes until tomorrow and if no improvement they may have to have him back in to do some more tests and increase the steroids again. Just want to see him improving and that isn't happening at the moment.

wineisfine that happened to me. It could be why the consultant suggested azathioprine. When he/she comes back maybe your DS should go on the azathioprine so that all is sorted by september/october in time for the new academic year. It will spare him from long term steroids.

Update - ds was readmitted to hospital on Friday as he was getting more unwell and is back on iv steroids but is still deteriorating. I am so worried that he might end up losing his colon. I just feel sick with the worry. It also doesn't help that we are only supposed to see him at visiting times which are incredibly restrictive and he wnats us there more as he is so ill and frightened.

wineisfine though it is natural to fear the worst the worst may never happen. It sounds to me as though your DS is getting very good care and has been admitted early which is a good thing as recovery is more likely.

The surgeons hardly ever operate in the middle of a flare up.

winetimeisfinetime I'm so sorry to hear your son is back in hospital - I do hope he's not there too long & they manage to get everything under control this time. Maybe now is the time to speak to them about the immuno-suppressants as they started me on them side by side with the steroids & I'm now 4 months from discharge & doing really well. Try not to worry about surgery - funny is right most gastros hate the idea of surgery during a flare-up as they can't tell which is 'good' bowel & which is 'bad'. My consultant tells me that most prefer to exhaust every medical option before they consider surgery.

I know you want to be with him all the time & I understand he is scared of being alone in the hospital - I wanted my parents & DP with me when I was there & I'm in my 40's so I can imagine how a teenager must feel. However he is in the best place to get better & I hope his recovery is quick.

Please let us know how he is getting on & take care.

wineisfine does your DS get funny dreams when he is on iv steroids? They can be scary. Also if he is in severe pain, it is OK for him to ask for something strong like morphine for a couple of days. Pain can make a person feel very nervous and tearful till the iv steroids begin to work. I'm so sorry he is in and going through a tough summer. I hope he gets better soon. I agree with Mrs Pinot perhaps now is a good time to bring up the immunosuppressants and the diet issues with the team. Look after yourself too.

Hi thank you so much for the messages - it did me so much good reading them when I got back from the hospital tonight.

Unfortunately he still isn't improving and is becoming very low in himself because he just can't see himself getting his life back at the moment. He had another flexible sigmoidoscopy this afternoon and we should find out tomorrow what that shows and what the next step is. Azathioprine is probably what will be suggested and I think ds will want to go for it as he is getting understandably desperate for some relief and at the end of the day it is his decision. I am now actually hoping he can have the option of Azathioprine as it is going to be the least toxic of the other options which I am worried they might deem neccessary like cyclosporine and Remicade.

I know losing his colon is a last resort but they do keep telling me at the hospital that it is a possibility which is why it worries me so much.

They have said he can have Tramadol for the pain but ds is a bit wary as he has had 2 different anti nausea medications that gave him very weird side effects and he is worried that the Tramadol might make him feel like that too. I think he needs it though as the paracetamol just isn't doing anything for the pain so hopefully he is going to try it tonight and might feel a bit better.

Thank you again for your support, I will update you when I can.

winetime. How is DS today? I really hope he is picking up. My dd started taking Azathioprine about 3 months ago after being almost constantly on steroids over the last year. She was desperate not to take immuno-surpressants after scaring herself to pieces about cancer risks but the other group of UC drugs was doing nothing to control her symtpoms and she agreed reluctantly to take them. Her consultant said he wouldn't and couldn't make her take them and could quite understand why she didn't want to but said the risks to the body from repeated flare-ups and constant steroids were worse than those of the drug. She was very worried it would affect her fertility too as she's 27 and wants children in future. She is still unsure whether it is or isn't ok to take the drug whilst trying to conceive. Her main side effects of azathioprine have been bad nausea but it seems to have pretty much gone now. It was bad though for the first two months.

She has said that in future if she is having problems tolerating drugs that if she has is able to have children and her family is complete, that she would think about having her colon removed. The consultant said he could totally understand why she would want that. I just hope that azathioprine is a drug she can tolerate and damps down the UC. I have to say that apart from a couple of hospital admissions last year she has held down a full-time high pressure job and though she needs far more rest than she used to, has a normal life. Hope things are starting to improve for ds now. Hugs

Hello,

Just an update on my first trial of Azathioprine, I am now down to two steriods a day, 2 x 50mg of Azathioprine and asacol and so far so good. Last time on the steriods when I got down to three a day all my symtoms came back but the Azathioprine appears to be doing its job, although I do worry things will go back to what they were. If they don't I recommend this drug to anyone. I am still having to have the blood tests weekly and I have just had my bone density scan which was fine. I have had a good quality of life over the past 4 weeks and forgot what this was like!!! The side effects have eased off now and I no longer feel sick and also have far more energy. Downsides are that my mouth is covered in ulcers due to my immune system, but hey a small price to pay I say. Also winetimeisfinetime I hope your son is improving and my heart goes out to you. Give Azathioprine a go, you have nothing to lose. All the best.

winetimeisfinetime tell your DS to ask for Ora-morph if he is in a lot of pain. I know its oral morphine but it really will help take the pain away - I was on it 4 hourly for a week after I was admitted & managed to sleep really well which helped me to heal. I also haven't suffered any after effects of taking it - which I was worried about at first. My consultant won't let me have any painkillers with codeine in as it can cause constipation. I really hope your DS is getting better.

vinogirl the mouth ulcers will go - I had them for about 2 weeks after starting the Aza & after trying Bonjela & Nystatin the Dr prescribed Flucanazole which got rid of them - fingers crossed they haven't come back & I've been on the immuno-suppressants now for 4 months. I have changed from Aza to 6MP due to hair loss & thats stopped now & my hair is starting to get thicker. Like you my quality of life is so good & I'm so glad I decided to give it a go.

MrsPinotGrigio, thank you for that info and I will go to my doctors and ask for something for the ulcers. When you say you changed from the Aza to 6MP what is this out of interest? So far my hair has been ok but it is early days. Like yourself I am so glad to have given the drug a go, fingers crossed all will be ok. My consultant said that some people eventually go into remission and can slowly come off the drug, along way off but hey who knows. Thanks for naming the drugs for ulcers I will ask my doctor if he can be of help.

vinogirl 6MP (Mercaptompurine) is the same family of drugs as the Aza - info here Apparantly Azathioprine becomes Mercaptopurine when its absorbed by the body. My consultant thought that its was the Azathioprine part that was causing the hair thinning so switched me & it looks like he was right.

winetimeisfinetime - how is DS doing now? Hoping that he is on the mend & starting to feel better.

MrsPinotGrigio Thanks for that information, I went to the doctors in regards to my ulcers and initally he wouldn't give me anything stating my ulcers were caused by a virus and nothing would help, however in the end he gave me Nystatin and a steriod tablet to put in my mouth on the ulcers. He also told me to cut down on my aza, but I said that without my consultants say so I would not do this. I finish my steriods tomorrow and am totally reliant on the aza and I am apprehensive as my toilet habits in the morning are slowly changing for the worse but not as bad. I also had specks of blood there which is worrying again as I can't live that life again. I have been that tired over the past two weeks that I have taken some time off work this week and with this condition being an underlying medical condition I don't have to worry to much. Has anyone else felt tired on the drug because it doesn't come under the side effects? I do however work 14 hour shifts at times and this could be the issue. I would ideally like to see my GP and get signed off for a few weeks but i get the impression they won't do this. Anyways I will let you know how I get on over the next coming weeks and hopefully this awful disease won't come back to haunt me.