Please can anyone help my 14 year old daughter been suffering since 2014!!!

My 14 year old daughter basically been told after nearly 3 years back and forwards to different hospitals for tests with chronic pain that comes and goes regularly that it is possibly IBS as no tests have shown anything. All the pain originally was on her right side and middle if stomach. February this year they took appendix out as a precaution. Since the operation she has had chronic constipation and been on high doses of laxatives different kinds. Nothing works she was eventually given an enema in April which cleared her as she must of had a blockage. But again for 3 months she's got chronic constipation and chronic pain on her left side which also travels to the middle of stomach. We are under cahms at the moment as this is obviously affecting her emotional and social health, over the last few years she's missed loads of school due to health which also having a knock on effect. She's going into year 10 when goes back to school next week so on top of her health also got a tough couple of school years. She's not been given any medication from Birmingham children's hospital and been discharged. We still see the paediatric doctors at our local hospital who we saw last week. They have not given her anything and not going to see her for 6 months.

I'm really frustrated that I can't help my child and hate seeing her in chronic pain and mentally affecting her. It's also impacting on the rest of the family too.

Could anyone please help don't know what else to do. I've started another food, pain and toilet diary again but have already done one in the past that didn't really help. But incase I'm missing something I'm trying again.

Thanks in advance.

23 Replies

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  • Hi Sophie,

    IBS is a get-out, catch-all phrase which just means that the medics don't know what's wrong with her.

    Exactly what tests has your daughter had to determine the cause of her problems?

  • She has had various blood tests. Scans. MRI. Xray. Endoscopy. Colonoscopy. Lactose tolerance test. Coeliac test.

    They also treated her for abdominal migraine.

    I feel like I'm getting fobbed off but am I just being a fussy mum.

  • No, you're definitely not just being a fussy Mum, we all feel we've been fobbed-off when we get stuck with the IBS label. Some doctors don't bother to do any tests for underlying causes at all which is absolutely infuriating.

    Both Buscopan and Mebeverine (Colofac) for pain relief can be given to children over 12 so you could talk to your pharmacist or doctor about those.

    Colon cleansers are gentler than laxatives and take a few days to start working, but many people have a lot of success with these. You'd need to do a search for child-friendly products.

    It's absolutely essential for your daughter to drink a lot of water throughout the day; prune juice is also good for constipation.

    Although you say (below) that you can't find any food triggers listed in the FODMAPs diet, it could be a complete food group that's causing the problem and FODs will help you to work this out.

    Hope some of that helps.

    Cat

  • Thanks. I've given her buscopan but not regularly as I feel like she's taking that much medication so difficult to see if medication also ca using pain.

    I keep trying to give her plenty fluids but it's hard at that age if choose not to drink even though I've explained the importance of fluids.

    She passed out this morning with the pain 😔

    This is the 5th time now in a couple of weeks. The GP did an ECG last week due to this and said it was ok.

  • Has any doctor suggested possible causes unrelated to digestion such as reproductive organ problems?

  • Hi yeah she was referred to gynea before deciding to remove appendix and whilst removing appendix they did a laparoscopy and apparently looked at all her female bits whilst inside with camera.

    Thank you

  • Look for the fodmap diet on the Internet, it is for people with ibs.

    Is she drinking a good amount of water and do you know if any foods ate triggers?

  • No she's not a big drinker. Can't get her to drink what she should drink after so many battles with her and have researched yesterday and found the fodmap diet but really can't see any food that triggers it.

    Thanks for replying

  • Sophie, I feel your pain (well your daughters...) and I must say that I never thought that I would have bad reactions to onions & garlic as I have been consuming copious amounts of these my entire life but I am finding out via FODMAP diet that I probably mal-absord these. I have known for many years that my tummy can't handle lactose (self testing, no Doctor would ever confirm this for me!) but now I can clearly see with low FODMAP foods that all of my usual triggers are gone. I was suffering from daily pains, gas, bloating and all the rest tot he point that each meal time ended with me in tears. I hope that you find a supportive Doctor who can also refer you to a good Dietitian! All the best. (must say that she needs more water.... that is a great help... maybe find a way she will enjoy drinking the water, by adding ginger/lemon or something not too high in sugars! ?? I have just started using psyllium husk fibre and its magic!! )

  • Hi what does she like to eat ? Drink ?

  • She eats normally. Got a really good healthy diet. Her fluid intake not the best but I'm not a big drinker either.

    I can't pin point her stomach cramps to any particular food at the moment.

    Thanks

  • It might be a healthy diet but it could still have foods that trigger it. For me tomatoes where a trigger, I think I couldn't digest the skin and it made me feel very ill. Tomatoes were on of my favourite foods, pizza is another that I can't eat anymore.

    So it was some of my favourite foods that were my triggers, your daughter needs to assess everything she eats.

  • Symptoms from intolerances can come on up to 2 days later, symptoms can last weeks. Pin pointing reactions can be near to impossible for most people.

    Intolerance test is best. As jim said healthy don't mean it can't affect someone. At 1 point i couldn't eat tomatoes, celery, oranges, lemons, limes, mushrooms, lettuce, onions, garlic and more. All healthy just very bad for my health. Spending say £50 is worth the hassle, instead of messing with food/Symptom logs for weeks on end.

    Also if still no luck with hospitals/specialists, find her a qualified alternative medical practitioner. That covers all they don't.

  • The problem with food is some triggers are instant for the stomach and others arent which makes it very difficult. I would most certainly try the fodmap diet as there is nothing to lose.

    At one stage i took buscopan every night as often had pain in the morning. It is one that you can take long term and for me has really helped.

    I would try actimal, strawberry, as its nice! Probiotics are really good and may well help.

  • Hi there .i know exactly how you all feel.as all tests are normal .have you tried a tablespoon of caster oil mixed with cranberry or orange juice.it works a treat to clear out any parasites that may be lurking around.and clears the bowles and its natural so no harm in trying this.hope things get better because I know how frustrating this can be .

  • Hi, I have had IBS since I was about the same age. Mine started with lots of pain, trapped wind and I spent endless nights clutching a hot water bottle to my crampy stomach. Anxiety over anything only makes it worse and now in my 60s I still have frequent flare ups. However, as others have said drinking does help a great deal and also I have recently changed to A2 milk. I don't know if it's that but I'm coming into my 5th month relatively pain free after a year of dreadful flares and numerous gp visits. It is worth a try. Probiotics may also help.

  • Hi,

    You must be so upset. It is really awful having to watch a loved one in pain. One feels so helpless. Your daughter seems to have had a lot of tests to no avail, so I would suggest considering asking to be referred to a different hospital to get another point of view. Birmingham should be able to send over all the scans and tests to minimise the distress of having to repeat them.

    Somebody above mentioned probiotics and that is definitely worth trying. VSL#3 is exceptionally good and can be ordered online. Others like Symprove. That one didn't do it for me personally, but this is an intensely personal area. What helps one person may do nothing for another.

    Your daughter seems to have been given a very large amount of laxatives and that will have interfered with her gut flora, so a diverse diet with lots of things that build friendly bacteria will help. It can take months, though, so don't expect overnight success.

    Other than that, I would suggest getting everything else in her abdomen checked, especially everything hormonal.

    I hope she finds some relief.

  • It will be worth persisting on your daughter's behalf because the tendency is to say 'we can't find anything wrong so it must be IBS'. Monash University developed the FODMAP diet and APP and there is useful information on YouTube, including a talk/explanation by the professor who leads the research. There are quite a few books written for people with gut issues. Dr Sandra Cabot has written good books and so has Marilyn Glenville. Xandria Williams is a Nutritionist and she has written many books about allergies and intolerances.

    There are now FODMAP-trained Nutritionists in NHS hospitals. I think I found a list on the Kings College London website. I am waiting for an appointment at St Mark's Hospital in London to see a nutritionist.

    Good luck.

  • Thank you.

    We are currently in hospital at the moment once again . They gave her an enema but still think there is a blockage. They gave her the option to be put to sleep and have it manually removed. Or the other option was to have a nasotube and give her clean prep through the feeding tube. She chose the latter option. Tried but unsuccessful because she was sick and panicked as they inserted it. Doctors are coming in the morning to discuss the next best and kindest option.

  • So sorry to hear that. I hope she gets appropriate treatment and they find a way to heal her gut. Sue

  • flax seeds seem very popular and helpful for constipation. Also I have yakult the yoghurt which is very good for it too as it is a probiotic and makes a big difference.

    The Clever Guts Diet by michael mosley is packed full of information recommend getting that book. You can get second hand copies cheaply.

    Plus the low FODMAP diet may help - google it for info - helps a lot of people.

    Will pray you get some help - you could ask to be referred to a specialist - I see St Marks Hospital in London is a specialist hospital in gastroenterology. They may be better placed to help than a general paediatrician.

    People need to know that gut problems effect people deeply, I also would recommend joining the IBS network you can join online as they may be able to give up to date advice. They have a helpline too. Hope things improve.

  • I've just come across this very worrying post and it seems that your daughter has more serious problems than IBS. What's concerning is that the precautionary appendectomy has made things worse, not better. Any abdominal surgery like this can lead to disturbances in bowel function. I would suggest that she sees a specialist gastroenterologist rather than a general paediatrician to see if anything else can be done to help her.

  • Hi. Thank you. We are in hospital with her at the moment been here since last Wednesday. They did a phosphate enama Wednesday but what came away didn't appear to be blockage as it was all liquid. So Wednesday they gave her 4 laxido and 2 senna. Thursday the 6 laxido and senna. Friday 6 laxido and 10ml sodium picosulphate. Saturday 8 laxido and 10ml sodium picosulphate. Sunday sodium citrate enema, 8 laxido and 10ml sodium picosulphate. Today Monday they can't understand why the pooh not coming out and say they can't feel any hard pooh so now decided they going to xray. I'm a bit annoyed has I asked for this Thursday. So watch this space.

    Birmingham children's hospital gastrointestinal team have said they have done all they can do however they have not seen her since having appendix removed. So she just under paediatric doctors at walsall manor.

    I have said I want her to be seen by a bowel specialist.

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