What caused your childs constipation?

[Ihaveayellowhat]

I have an 8 yo girl who’s had constipation since she was one. We’ve been under continence team who were great but are discharged now because it’s generally manageable with movicol. Although after a stable year last year, she’s now needing more and more sachets a day (up to 4 now) due to soiling and not passing stools.

she’s otherwise healthy apart from cough variant asthma. She is slightly tall for her age and on 50th centile for height

shes miserable about the constipation never getting better. She doesn’t withhold anymore and hasn’t for years and eats a healthy diet and drinks loads. She tries for the toilet with a book or her iPad to be relaxed. School are great and if she needs to go she can go. her bowel isn’t likely to be distended anymore because she feels the urge to go and will go

so why on earth is she still suffering? We tried dairy free and that didn’t help. Do I go back to the GP and ask for blood tests- I know that constipation can be a factor in Ehlers danlos, coeliac diesease, hypothyroidism, cystic fibrosis and crohns. She has tummy pain very often but not diarrhoea unless overflow.

im just wondering if for anyone else the constipation wasn’t just constipation and was a symptom of something else. Maybe there’s something I missed and something she needs to be tested for

thanks for reading my essay 🙈 any comments are v gratefully received

Has your child had any blood tests at all for anything?

she did when she was around 4 for coeliac which came back negative. I don’t think they tested for anything else. I don’t know if that rules out coeliac disease for ever or if she could still test positive years later

That's so sad. What a horrible situation.

My son had constipation since he was born up until the age of ... well now to be honest and hes 8... he's been on sachets for years after he had fecal impaction at 3 and would constantly have overflow and diarrhoea due to not going to the toilet properly. He's still not 100% but it's better than it was he's going every day.

It sounds like she needs more test to be honest because that doesn't sound normal. It must be so upsetting for her and you. I would definitely go back to the GP and ask for more tests or be transferred to a specialist.

Thank you- you sound like you’re in a similar situation to me. Is your son still on daily movicol? Do you think there might be an underlying reason for his constipation?

i think I will have to go back and ask for more tests. I think GPs just think as long as they take the movicol then problem solved and I just wonder if the movicol just masks the cause of it all sometimes

Yes, he is and I definitely agree with you that they think that will just do the job.

He has a strict diet of only brown bread, a lot of fibre etc .. the usual things they tell you.

When I was pregnant, he had a small abdomen (i'm not sure if that has anything to do with it, but the doctor did say he may have abdominal issues when he was born) though they never have followed through with any tests apart from testing for coeliac disease which was negative.

He has been going regularly at the moment and I have reduced his amount of sachets so I'm just monitoring but if it still continues or gets worse again, he'll be straight back to the GP.

Thank you. I hope your little boy continues to do well

You're welcome, hope you can get some answers!

DD is younger but similar, perfectly healthy apart from asthma, also 50th centile. But almost 5.
We are on 2 sachets daily but despite an incredibly good diet it just seems to be permanent.

Unfortunately DD is a bit too young to explain what she feels very well. I am sure it is behavioural but not sure why. She toilet trained really easily at just 2, but the constipation has been 3 years now.

I wish I had some ideas.

You've probably heard of it, but in case not, here's a link to a relevant, really helpful, charity: https://eric.org.uk/

The ERIC website is great. I just wonder quite often if there is something causing the constipation as opposed to it being a stand alone thing. Could it be a side effect of something else? There seems to be so so many children suffering with it too. I’m on the movicol mummies group on Facebook too which is good.

Bless her to have suffered with it for so long. DD's constipation began around 6-7mo when we started weaning. I already had my suspicions re a dairy allergy but GP didn't take me seriously, and when she started having yoghurt, cheese etc it all escalated. It didn't fully settle for months after coming off the dairy as she had developed such a fear of going she would withhold it, start to refuse to eat / drink which would make her stool even more solid and it was one long vicious cycle. The Gp prescribed various things which didn't really help, the main thing that really made a difference was a cup of prune juice every morning as the cycle stopped soon after that. Fully appreciate that you have probably tried everything in 7 years of her suffering with it though.

Have they ever done a faecal calprotectin stool test to check for inflammation? And does she ever have blood / mucous in the stool? I ask because I was diagnosed with ulcerative proctitis last year, which is a form of colitis (IBD) but only lower down in the bowel. My symptoms were constipation and blood/mucous in my stool. GP ran various bloods which initially came back normal, but it was this stool test which indicated IBD as my level was over 800 and normal range is 0-50. Most people associate IBD with diarrhoea but with proctitis constipation is very common so it's worth ruling this out.

Thanks so much for this. We’ve tried reduced dairy and although I think it was a bit better, after 7 weeks she still needed the movicol. She does have prune juice too- well the Ella’s kitchen prune pouches.

she’s never had a stool test so thanks for that suggestion- I will definitely mention it to her gp. I haven’t looked closely at her poo for a while because she usually just reports back to me these days. I haven’t noticed any mucous or blood though. Is it quite noticeable if I do look?

My daughters diet is really good too. She is able to explain it to me and says she just can’t get the poo out even if she needs one. It used to have a behavioural element when she was a toddler and would withhold but she doesn’t anymore now she understands that makes it worse. She desperately wants to be normal and is getting embarrassed by it. It just seems to be permanent for her too no matter what we try

My autistic daughters both suffer with constipation but I think their diet also contributes.

I hope things resolve for your daughter soon.

Thank you, yours too

It might be worth trialing coming off dairy again but for longer. The main reason we stuck with it is because DD's eczema cleared up within a couple of weeks so it was obvious dairy was the problem. If we were only trying it for the constipation, we'd probably have given up after a month or 2 because her bowel movements took so long to return to normal.

Re the stool, yes the blood / mucous is quite obvious in a flare up but whether it would be to an 8 year old I'm not sure. It all came on so suddenly for me so I was actually looking out for abnormalities due to the constipation and cramping I was experiencing. Hopefully it won't be anything like that but worth ruling out for sure x

We had this for 12 years until I decided to try cutting out FODMAPS and she is a different person now. She had everything you describe and it was awful for her. We cut dairy - just as bad. We cut wheat - just as bad. Then we went low FODMAP and everything was fixed (EVERYTHING) in 24 hours. I felt so guilty for not doing it years earlier when we did the same thing successfully for my husband's IBS.

You have to start with full elimination (just google Monash University FODMAP elimination) and then reintroduce foods one at a time. She is JUST about old enough to be able to communicate improvements.

Be aware that when you have fully eliminated everything, she will feel SO MUCH better within 24 hours that you will be tempted to just keep her on the elimination phase! But you can't live like that, so you do have to reintroduce foods.

For my daughter it was fructans - she can't eat apples, pears, peas, onions or garlic at ALL, and there are various others that she can't eat too much of (like asparagus) but realistically, she can get through the week without accidentally eating asparagus! :)

Her secondary school has compulsory school dinners, but she has permission to bring in a packed lunch so that she can avoid onions. The school nurse knew all about FODMAPs and wrote her an exemption.

I'm not sure it's IBS, strictly speaking, but that's what we're calling it anyway, and if she is eating at a friend's house we explain that she has IBS and can't eat onions, because that's the thing that's hidden most in food.

If you are a vegetarian household, you will struggle though. Beans and lentils are off the menu forever now.

Thanks so much. She has recently told me that fizzy pop (which she has rarely as a treat) and fresh apple juice give her really bad tummy cramps. She’s gutted about this because she likes both drinks but I’m pleased she’s been able to communicate it. She does sometimes get acid reflux too which has led me to GERD when I’ve googled. However she didn’t struggle with reflux as a little baby. But she does have the constant cough.

I may well have to try no dairy or fodmap. After 7 weeks of no dairy, I think she was doing quite well but the second we came off the movicol which i had really gradually reduced she was having issues again. When I said the dairy free doesn’t seem to be working she was elated to be able to have it again so I think if I tell her she’s back off it she will be devastated! However, I will definitely keep it in mind and a FODMAP diet as possibly the only way to truly know what she can and cannot eat. My mil has also had to to a FODMAP diet for her IBS.