To ask how you cope with IBS in teens...

[Holycrapster]

Sorry it's not an aibu really. I just need all the help I can get as am totally clueless. My lovely 14 year old son is Ill. It's been going on for over 2 years now, bouts of constipation and pain, and then bouts of diarrhea. (With a good few months of wellness in-between) The doctors think it is IBS as tests for Crohn's and celiac have been negative. He is being referred to pediatrics but apparently it will be a long wait. He is the middle of a bout of diarrhea at the moment. It's been 3 days so far and he's having to go more than 10 times a day. I don't know what to do with him for the best. Looking for any advice on things to feed him (he's still eating but nothing is staying in) and how to help him.cope. I don't know whether to give him immodium as I am guessing it will send him the other way. Really worried. Would love some advice on how to get it under control.

Have they checked for bile acid malabsorption? Worth asking them to investigate.

As someone who has had it for a lifetime getting a proper diagnosis is essential.
Get your gp to refer to a dietician.( an nhs dietician not a nutritionist)
Meanwhile get a notebook and make 4 columns .1 time 2any foods/drinks 3any symptoms 4 anything else.like playing football.or after tea .
Keep this and you should see a pattern emerge .Take this to dietician or any speciaist

Thanks cryalot, he has started a food diary but had it by day not by time. Will see if that helps. So far we can't see a pattern at all.
SRK thank you will ask. It does sound like how he is now, and his bilrubin is generally slightly raises so maybe that is a sign.
Has anyone else got teenagers living with it? What can we do to help it pass quicker? He got up this morning and had breakfast before running for the toilet, slightly better than the last 3 days. I really want it to ease for him today

Wow I could have written this post. My lovely dd is 12 and she's basically stopped eating breakfast and lunch. During and after dinner when she eats any, she's dashing off to the toilet.

She was referred 6 weeks ago and her appointment isn't until September.

I don't know how we can go on until then. We are also doing a diary and I can't see any pattern at all. They told us she has to carry on as normal but how can she? She used to love cooking dinner with me and eating it, she's my only one that would try different flavours and all new dishes that we cooked.

She had blood tests and one came back fine and one satisfactory. They told me the notes have been given to the hospital for her appointment.

I can tell she's getting really down about it and I don't know what I can do, it's literally after eating anything. She was so excited the other day as we ordered a Chinese and she ate one bloody chicken ball and was straight on the toilet. I've had to speak to the school and get her a toilet pass so I'm hoping she'll try eating at school.

This has just started happening over the last 8-9 months. It's got so much worse over the last 2 months.

I feel absolutely useless.

My 19-year old daughter was diagnosed with IBS 2 years ago. She has the diarrhoea variant (IBS-D). It has had a hugely detrimental effect on her - tricky to leave the house, wearing protective pants ‘just in case’. No social life and missing lots of uni lectures. Tried the FODMAP diet (with support from NHS dieticians), food diary, buscopan, Imodium , colpermin etc etc. No improvement.
Game changer has been paying for The York blood test, which identified that she is intolerant ( immune response) of dairy and egg white. She has now cut these out of her diet completely ( for about 6 weeks now) and is so much better! Not completely ‘cured’ but not far from it.
She is still anxious about going out but this is lessening as she gains confidence that she is not going to have an ‘attack’ whilst out.
The York blood test is expensive (£350 ish) but we were desperate.

Has he tried giving up dairy? I did and it helped so much. Only get symptoms when I’m stressed now and even then it’s nowhere near as bad.

My DH found it was fructose he couldn’t tolerate. By cutting out fruit juice/honey and processed crap, he was suddenly much better.

A food/symptom diary is a really good plan. Get him to try and eat simple foods as at least you’ll know what’s in them.

You're poor Ds. I started stuffing when I was 16 and it was awful. I used to eat imodem like sweets just to get through college and my part time job at the time.

I agree with a detailed food diary. When I found that I was most effected by eggs, latose, excessively fatty foods and onions it changed my life. I always have imodem or buscopan in my purse for when I'm out as it's not always clear what is in all food ( plus I sometimes just really want a chocolate cake and it's best to be prepared).

Other triggers are stress and when I'm ovulating (not an issue for your ds but something I really hadn't considered at the start ).

My GP wasn't ever very helpful so it has just been trial and error. I hope he feels better soon x

Dd now 18 was diagnosed with it a couple of years ago after tests for celiac and crohns ruled them out. Stress is a big trigger and severe pain the main symptom and loud stomach noises.
I am not 100% sure this is the correct diagnosis as she is tired and pale all the time and lost weight.

Get a second opinion
It took me 3 years to have Crohns diagnosed by which time I required extensive surgery - my blood tests have never shown the inflammation markers but endoscopies revealed I was seriously affected.

Don't let them fob you off with 'it's just IBS'

Thanks for getting back to me.all. I am.so.sad for these kids having to cope with this. Today I've felt fed up...rang the hospital and yes they've got the referral.but no he doesn't have an appointment yet as the consultant has to decide how urgent it is and he usually takes at least two weeks over it (it's already been 2 weeks). Rang the doctors surgery and yes the latest blood tests are back but a doctor hasn't looked at them yet and.maybe I could ring back tomorrow.. felt very on our own with it. Anyway his bowel movements are.down to 6 instead of 11 today so we are hopefully on the right track. He will keep up with his food diary. Have just given him poached chicken and rice for tea. All the food intolerance stuff is interesting but the thing I struggle to understand is how he can be fine for months on end with no symptoms at all if it is food related and our diets don't vary that much? His last bout was March and before that October and July so it hasn't been all the time, of it was lactose or.fructose or gluten wouldn't it affect him every time?