Hi Lynn, hope the results tomorrow will be good for you and Callum.

Jordan goes to Bristol Hospital for his treatment etc, we live in Gloucester and they dont deal with it here like they do in Bristol luckily its only about a 40 min drive for us

sam x

Hi Lynn

Best of luck with it all.  Can they not do the colonoscopy in Treliske, or is it because Callum is a child?  Did you mention about him feeling dizzy etc?  Just curious as that is the same as me and my consultant seems to ignore it.  Hope the blood results are good.

My heart goes out to you both.

Best wishes
Lou

Hi Lou,

Still waiting for phone call from the hospital today. They did Callum's first colonoscopy at Treliske back in March, but Dr Thorpe is very much overseen by a Dr Spray in Bristol, she is some expert apparently, and he said she might want one done up there. I suppose we could refuse to go, aren't patients supposed to be able to choose where they have treatment now?

Off to school now for a meeting with the teacher.

Lynn

Hi Lynn

This is my first visit to this site. I read your message and felt I should add something positive.

My 23yr old son has Crohns. He suffered from about 11 but was not diagnosed until he was 18 and in his first term at Uni. It had a huge effect on all of us. He was so ill and the docs always fobbed us off. It was only diagnosed when he had an accident playing football when we were on holiday in Corfu. The doctor took one look at him and said he's very poorly isn't he? He listened to his stomach and immiediately confirmed what he thought it was. At this point he was 5 ft 11" and weighed only 8st 4lb! On our return and after a big row with my doc, he had the tests. Unfortunately in our case it runs in my ex-husbands family. There are too many cases for it not to genetic.
Any way to cut a long story short, by the time they diagnosed it he needed surgery very badly and had quite an amount of his small bowel removed. Im touching wood here but.....he has been in remission since then...4 years now. He takes Pentasa daily and Questran as everything goes straight through him without it. But he has no pain. He is doing a PHD now and last weekend finished 730th in the Great North Run dressed as Liza Minnelli!

Don't dispair!

Mel

Hi Lynn

This is my first visit to this site. I read your message and felt I should add something positive.

My 23yr old son has Crohns. He suffered from about 11 but was not diagnosed until he was 18 and in his first term at Uni. It had a huge effect on all of us. He was so ill and the docs always fobbed us off. It was only diagnosed when he had an accident playing football when we were on holiday in Corfu. The doctor took one look at him and said he's very poorly isn't he? He listened to his stomach and immiediately confirmed what he thought it was. At this point he was 5 ft 11" and weighed only 8st 4lb! On our return and after a big row with my doc, he had the tests. Unfortunately in our case it runs in my ex-husbands family. There are too many cases for it not to genetic.
Any way to cut a long story short, by the time they diagnosed it he needed surgery very badly and had quite an amount of his small bowel removed. Im touching wood here but.....he has been in remission since then...4 years now. He takes Pentasa daily and Questran as everything goes straight through him without it. But he has no pain. He is doing a PHD now and last weekend finished 730th in the Great North Run dressed as Liza Minnelli!

Don't dispair!

Mel

Hi Lynn

Good to hear such a positive note from Mel.  I've heard lots of positive stories and met quite a few people who have lived with Crohns since childhood, I know it probably doesn't feel  that it will happen to Callum when he's going through such a rough time, but I think we all have to remain positive and see light at the end of the tunnel.  I know that what is affecting me is depression.  I've worked all my life and now I'm signed off sick and feel so terrible that I'm not sure I'll ever be able to work again although my consultant assures me I will get better, it doesn't feel like that.  I know that when you are dealing with your own child it is worse than going through it yourself as my daughter has special needs and has spent many years to/fro the hospital, which she just takes in her stride, whereas I'm the one that frets.

Hope the hospital got back to you.  I'm going there on Thursday so I'll ask about support groups for young people and let you know.

Cheers
Lou

Hi to Mel, many thanks for your story.

To Lou and everyone, Consultant phoned this afternoon, we have two choices - (1) Prednisolone and Azathioprine OR (2) Azathioprine and another 6 weeks of Modulen feed! Have talked it through with Callum and he has decided to try Option 1. We know it means stronger steroids and more chances of side effects, but to be honest, we did the Modulen before and it didn't work fully - whats to say another 6 weeks won't be the same, and we would end up having to do the Pred after anyway?

Has anyone else's child been on the Pred & Aza?

Saw teacher today, they are knocking out French, Spanish, Art & Music from his curriculum and just concentrating on the core subjects for now, means he will be in school most of the time, will only miss about 5 lessons a week, and will have 4 lessons a week in Student Support, where he can have extra work to catch up. It will stop him stressing out over so many subjects and it means he will still have a chance to reach targets.

Lynn

Hi Lynn My son (Joe who is nine) tried Modulan last year. It didn't work at all so he went on the steroid and Azacol route. It took him ages to get off the steroids and even now he is not in a good place. However I think it is the best we are going to get...
Good Luck
Lisa  

Hi Lynn

I've also tried the  Prednisolone and Azathioprine option but didn't get on with Aza so I'm now on 6 mercaptopurine but I'm also having terrible side effects. Not sure if I will be continuing or not, seeing the consultant tomorrow as I have now developed pancreatitus, presumably caused by the  6cmp.  Don't know what other options are available, I'll keep you posted.

Hopefully Callum will not have too many side effects, I'm always prone to side effects with all medicines but I know loads of people on pred who don't experience anything.  Pred has certainly improved my bowels - almost an immediate effect.

Glad to hear that school are being so supportive, this should take some of the stress off him.

Good luck
Lou

Hi Everyone dont want to speak too soon but at the moment Jordan is now drinking the modulan, fingers x this continues for him xx

Hi Sam,

Thats good news about Jordan and the Modulen, just a thought, Callum always prefers it cold, and what flavourings are you using? Callum didn't like it so much with the Nesquik powder, he likes the Crusha syrups. I found the smell quite revolting at first when I was making it up, but I think I am used to it now.

Callum is to start on 40mg a day of Prednisolone for 2 weeks, then reduce down by 5mg every week, also he is being put on the Azathioprine. Weekly blood tests for 4-6 weeks, and he is to continue with 500mls of Modulen every day for the foreseeable future. We've been told that he won't be susceptible to every cough and cold going, but to keep him away from anyone with chickenpox, shingles, etc.  That will be fun at school, I know his school have at least one case of chickenpox at the moment!! (My friend's daughter!)

Fingers crossed for the next 10 weeks or so!!

Lynn

Hi Lynn

Jordan prefers it cold as well, ice cold lol, we have got flavourings to add from the hospital, he likes the strawberry best, we havent been told we can use the crusha syrups, did the dietician say they could be used ??

Good luck to callum for the prednisolone and the Azathioprine, poor thing weekly blood tests as well.

Hugs Sam x

Hi Sam,

Our hospital said we could put flavourings in it, but they never offered us any! I asked what to use, and was told we could put Crusha in it, Callum doesn't like the chocolate though, it makes him a bit sicky.

Our dietician is fully aware what we use and she has never said anything either.

Lynn x

Hiya Lynn, i might try the crusha then, do you just buy it in the supermarket ?   might make it taste nicer.
hugs sam x

Hi again Sam,

Yes, you should be able to get it from Tesco or Asda, although our Tesco only do the smaller bottles, in strawberry, raspberry or chocolate - Asda do it in 740ml bottles, in the aisle with the Nesquik and UHT milk.

Not sure about Sainsburys or anywhere else, I'm not close enough to those stores to know if they sell it.

I daren't run out now, Callum won't swallow it without it!! LOL

Lynn x