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Chronic fatigue and crohns disease

(11 Posts)
mumoboyz Wed 11-Jan-17 11:53:56

Anyone out there who has a teen with CF and/ or CD? My son is 15 really struggling at the moment - Trying to get sensible advise from GP or hospital is like pulling teeth. Neither are interested that he does not have a life - GP says crohns related problems ask hospital - hospital says not crohns related - see GP. He is diagnosed with CD but CF is what I think he has and no one wants to help. He sleeps 18 hours a day has very restless nights headaches and in pain. Has not been to school since he caught cold in 3rd week in September. Last year he missed most of the year for same reason. I am desperate mum turning to the internet for help.

BusterGonad Wed 11-Jan-17 12:00:36

I do not have a child with either but I do have Crohn's, may I recommend www.crohnsforum.com it's full of really good advice.

Fairylea Wed 11-Jan-17 12:02:59

Does he have regular b12 injections? My mum has severe crohns and has awful fatigue if she doesn't have b12 injections - they give her such a boost as with the crohns and after 3 surgeries her bowel doesn't absorb things so well. Worth asking the gp about if your son doesn't have them. I think Mum has one every few weeks.

BusterGonad Wed 11-Jan-17 12:04:08

May I just add Crohn's comes with a whole host of problems, has your son had his iron and b12 levels checked recently? Chronic fatigue is also an issue. Don't be fobbed off. Please look in the Crohn's forum, it's a wonderful, if not a bit depressing place!

BusterGonad Wed 11-Jan-17 12:04:46

Cross post with Fairylea.

BusterGonad Wed 11-Jan-17 12:10:08

I went back to bed after my husband went to work today for 3 hours and yesterday for 3 hours! It can be tiring constantly fighting your bodies battles! It's a shitty shitty disease in more ways than one! Good luck op. I wish you and your son well.

mumoboyz Wed 11-Jan-17 12:58:33

Thank you both for your comments I will definitely look at the crohns forum, I have begged both my gp and the hospital for b12, last year his levels showed it was low... apparently not low enough even though it was highlighted lower than the normal range, I started giving him over the counter b12 supliments but they made him have tummy pain. the gp would not give injections without the hospitals say so. Hospital has recently put him on long term antibiotics and vitamin d in addition to the other awful drugs hes on. Not made any difference. I just want him to have some kind of life. He should be in year 11 at school getting ready for gcse . No chance.

Floralnomad Wed 11-Jan-17 13:05:07

I have a 17 yo who has coeliacs and CFS , she was diagnosed with both at about 11 , at the moment she has the nasty cough virus going round and I think she has also been 'glutoned' so she can barely move . We decided to HE from 14 as school / tutors weren't working for us . AYME might be useful for your son , it's a forum for young people with CFS/ME so lots of people in the same boat .

BusterGonad Wed 11-Jan-17 14:38:48

Op the Crohn's forum has taught me all I know about it, doctors are really not that great with it. There are even specialists on there who can help you understand doctors notes etc. honestly it's a life line.

rogueantimatter Wed 11-Jan-17 20:47:16

Hello mumoboyz

I don't have much knowledge of Crohn's, but I have ongoing gut issues and chronic fatigue. I went to a private nutritionist - not a dietician - a woman who had trained at the Institute of Optimum Nutrition. She was very helpful, doing various specialist tests, recommending supplements and advising on a very specific diet. Nutritionists have a better understanding of how much of the micro-nutrients are worth supplementing - eg if several tests come back as in the normal range but towards one end they may recommend short-term large doses.

Has he been tested for coeliac's? Apologies if he has.

A private holistic hospital might be useful for your son.

The final thought I had was to mention vitB12 sprays - supposedly better absorbed than oral supplements.

Please pm me if you would like me to let you know the name of the nutritionist I saw. She is based in Scotland but should be able to give you the name of someone in your area.

LoveBeingAMum555 Mon 20-Feb-17 22:03:15

Hi I know it's not a new post but i was just flicking through and thought I would share our story. My son is 18, was diagnosed with Crohns when he was 10. He had a really rough time of it for the first 4 or 5 years and suffered really badly with mental health problems too. He was allowed to come out if the education system completely at about 12 years old on advice from his psychologist. He was permanently tired, rarely left the house, clung to me but couldn't access any kind of help because he couldn't express his feelings. We were told that he was probably on the autistic spectrum and has mild learning difficulties. His Crohns was so severe that it had affected his mental as well as physical development.

Eventually he went onto Infliximab infusions. His physical health improved and slowly the mental health problems got better too. Now he is a charming 18 year old with a part time job and a small group of friends, learning to drive, going to the pub and in many ways just a normal lad. The tiredness is still there, he would struggle to work full time and he knows that he has to juggle things, or just spend a Sunday in bed to recover. We were once told that he would probably never be completely independent but when we think about how far he has come its amazing.

We find that many doctors just don't understand the impact of this illness. The last one we saw went on and on about how my son should go to college yet 18 months ago he couldn't speak to a stranger, let alone get on a bus and go to such an unfamiliar place.

There is hope. My son has no GCSEs and I know this is far from ideal but I gave up worrying about it a long time ago. He may go back into education one day but right now I see him smiling and laughing and that is so precious. I hope things work out for you and your son.

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