IBS

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DD16 has just been diagnosed after at least a year on and off with pain and lots of time spent in her room.

I know nothing about it and I don't want to be DR Google, is there anything I should know, things that may help. She has more poorly days than well ones.

I have booked a food tolerance test for this week as I'm assuming this may be helpful?

I think I'd be pushing for more investigations. IBS is very much a default 'we can't find anything else wrong' diagnosis and symptoms, while inconvenient and painful, really shouldn't be incapacitating. Your poor DD.

I'd also investigate her diet. Drs often recommend high fibre and it can exacerbate IBS. Lactose and gluten intolerance can also cause symptoms. I don't eat sweetcorn and tomato skins - they come out in the same form as they went in, causing havoc on the way.

Peppermint tea or oil and low stress. I'm fairly convinced mine was made far worse by hormones and she's 16.

I'm on a low FODMAP diet at the moment, which is shit but does work. Have a Google.

She has had a minimum of 2 hospital stays this year, missed loads of school, she is 15 not 16 (typo) has gone from being a friendly out and about kind of person to staying in with hot water bottles and sleeping lots or up all night in pain.

She had us all up at 2am this morning in agony. Only thing that seems to help is heat and pressure on her tummy.

She can get really bloated and her stomach distends, she is miserable with it all and isn't eating because she is convinced that every time she eats it starts off another stomach ache.

Thank you though, I'll have a look at FODMAP and I have another drs appointment booked for this week plus the food test thing.

We have crones in our family (my sibling) I can't help wondering if it's something more sinister. Not that IBS isn't, from what I'm reading it's really restrictive and DD loves her food

I was diagnosed 20 years ago - my dad died suddenly when I was in my early 20s and it co-incided with that, although the two things may have been unconnected. Has her GP prescribed medication? After lots of tests at hospital and trial and error, I now take an anti spasmodic every day, and generic imodium which largely keeps it manageable.

I never did any food intolerance testing, but did do a food diary for about six months (very boring!) which helped find out what my trigger foods were. I know dairy can make me really unwell, and some meats, but it can also be quite random and stress/my period really sets off a flareup. Initially alcohol was a complete no-go and I was tee-total for over a year, now that's fine - I realise that won't be an issue for your daughter, but it shows that it can chop and change in terms of what sets it off.

If the doctor hadn't suggested it, a food diary might be useful. Another thing which helps me is to have a mental map of toilets when I'm out and about, just in case.

Going to the toilet and her stools etc aren't a problem that DD has mentioned at all.

I started a food diary with her this week although she isn't eating much at all, she is convinced diary causes her to have stomach pain which is either just a nasty pain or so severe she jokes she is going to give birth!

As a typical teen around her she is surviving on super noodles and subway. She did let me cook scrambled egg today but you would have thought I was feeding her rocking horse shit!

Keep a food and symptoms diary. Learn about FODMAP. Follow basic advice email. Good. Eat regular small meals etc (Google NICE guidelines for IBS as they spell this out).

There is a gut-brain connection so stress management is important.

Referral for CBT can be helpful.

If she's had hospital stays I hope they've done adequate investigation and she should be referred to a dietitian for support with FODMAP etc.

I have IBS (I also treat it) and the pain from it can be agony.

Personally mine links to many other issues including gynaecological (many women find this). Any bloating/gynaecological pain must be checked out.

I found VSL 3 supplements very helpful and they have good evidence for efficacy.

Good luck xx

The hospital was near useless unfortunately. They kept her in for 3 days to monitor her the first time.

Unfortunately she was having her period at the time and no one would listen that it wasn't period pain. She started her periods at 9 so it's been a while...

Then we went back in with some fainting episodes due to the pain, in the street whilst out with friends and an ambo was called. A scan was carried out then but nothing found.

She then had a UTI which was left untreated and she went 3 days without passing urine - 2 litres once they decided to put a catheter in!

I know it must be difficult to diagnosis but the poor girl is in constant pain and I don't know what to do apart from keep taking her back to the GP but I don't know what I should be expecting or requesting?

When mine was at its worst the GP advised me to keep my diet as bland as possible - grilled chicken, boiled rice, scrambled eggs, mashed potatoes etc, no pre-prepared stuff - but it sounds like your daughter's symptoms are very different to mine. (I get terrible pains, then need to rush to the toilet, what is termed IBS-D.) I agree with pp about eating little and often - a trigger for me can be going for a long time without food then eating a big meal.

Thank you, looks like a long road ahead

Keep a diary first so she can show the GP.
Coeliac test needs doing. FBC and inflammation markers.

Follow the NICE guidelines for IBS and maintain the diary.

If no joy ask for referral on - either gastro team for tests or dietitian for FODMAP guidance.

We went for a private food tolerance test today. Nothing dairy or wheat showed but an allergy to oranges.

DD likes fresh orange, orange squash, fizzy tango etc. Since having these problems she isn't eating well at all and probably lives off smoothies more than she should.

They advised to avoid the above for a month. Do 15 minutes of skin brushing a day, drink 2 litres of water a day and take 2-3 tablespoons of golden linseed every morning as DD is only opening her bowels approx every 3 days.

I'm still going to do the food diary whilst we give the above a go.

Has she had any proper investigations? Like colonoscopy or gastroccopy to rule out any ibd?

My IBS was only diagnosed after both of those rules out anything more sinister.

For me, fibre is the trigger so I have to eat a very low fibre diet. This goes against everything we are taught and when the consultant suggested it to me I thought it was bonkers it it really has made a big difference.

I was in hospital for a week 20 years ago with severe pain, no such thing as it's then, Through my own management discovered dairy , anything with high fibre content and nuts will make me suffer pain.

I basically have a high carb diet - potato, pasta etc would love to lose a stone but it's tricky.

No investigations offered so far, that's why I paid for then intolerance test.

DD is in her last 9 months of school, gcse year and has only attended 1.5 days since they went back so I'm a bit desperate to get her back to school but the cramps hit all of a sudden and she has severe fatigue

I agree she needs to have a Celiac screen done and a Calprotectin stool test to check for inflammation in the Bowels suggesting a IBD.
Full bloods would also help.
I have had all the above and other tests and they all came back clear so now I have my IBS diagnosis.
I have been advised to cut out wheat-try the low Fodmap diet-it sounds really restrictive but you can start to reintroduce things so it isn't long term.
For me and many others Onions are a big culprit.
I take Linseeds with yogurt in the mornings and have tried all sorts of pills etc but do not think anything really works.
Stress is a HUGE trigger and it is hard not to get stressed when in pain so it is a never ending cycle sometimes.
My pain symptom is pain(can be constant and last up to and over a week at a time)
There is a group on Facebook which she may find helpful-I only dip in and out sometimes but full of helpful advice from fellow sufferers.
Definitely get the other tests done first however.

Colonoscopy etc is further down the line. Read the NICE guidelines - they're free and online - and speak with her GP.

There are meds that can help with pain and cramps and various blood tests that need to be done. Don't try to jump the gun and go straight for surgical procedures. If you follow the right advice and speak to your GP armed with enough information about her pain and symptoms you should make progress.

I've had IBS for 18 years and its horrible. I totally recommend the Low Fodmap diet. It's also about finding which foods suit as everyone is different and can tolerate different foods, I find that as much as I love bread unfortunately it doesn't like me (I've had negative tests for celiac disease) so tweeking the diet can really help. Colpermin (peppermint oil) capsules really really help me. Stress makes my symptoms a million times worse and it was a stressful time if my life which started the IBS in the first place, so I would recommend mindfulness, the Headspace app is great (been using it for ds who is currently experiencing school anxiety), also there is great support on Healthunlocked it has an IBS forum. Hope your dd finds some relief soon.

Also, on a side note. My sister had been told she had IBS for years but has recently been diagnosed with endometriosis, so that may be worth mentioning to GP?