to reach out to folk with children who suffer chronic constipation?

[Totality22]

Sorry I know it's technically not an "AIBU" but on the squash thread I noticed a lot of parents who mentioned their child has / had chronic constipation and I need to some help and support.

DS is 27 months and has had chronic constipation on and off since weaning.

At the moment he is going through a really tough phase - poo'ing maybe twice a week and finding it incredibly painful to go [took him 3 hours to pass his last poo and lots of tears / upset]

We're nearing potty training age and I am scared this is going to hold him back.

Please can any parents of constipation sufferers share your experiences - how you cope / how you managed to potty training etc.

For information DS isn't on medication but was given a course of Movicol at 13 months, when it finished the GP wanted him to go it alone. We had a period of relative "ease" for a good while but now we're back to full on, horrific constipation. DS is incredibly fussy with food at the moment and I know that is the direct cause but nothing can persuade him to vary his diet? I beg, plead, force, reason, bribe to no avail.

Seeing GP on Monday (just moved house and had to sign up to new GP.. I also have a 5 week old baby so have been a lot more lax in the "healthy" dept and we've all been eating a bit more crap than usual)

You need to be a bit of a detective too! Took me decades to discover my body didn't like cow's milk and basically grinds to a halt. As an adult I tested positive for lactose intolerance and cutting out dairy has made a big difference. This is unusual, because lactose intolerance usually gets the bowel active, not the opposite. So, I'd say, you need to observe your own child really carefully, log input and output (!) follow suggested clues and solutions, but remember every body is different. You need to be assertive with your GP.

Iwould - we got a referral to the hospital eventually and did a clear out with big doses of movicol one school holiday and reduced back to 2 a day and the clear out and keeping her free flowing stopped the incontinence, soreness and wee infections. I just wished we'd insisted on the referral sooner. We were giving her one sachet a day for years but it wasn't enough so their was backup higher up the bowel. I hope you can sort him out soon.

We mix the movicol (chocolate flavour ) with milk and chic milkshake powder. Goes down fine now

Lactose free milk helps too

Changing from cows milk to goats milk really helped my dd. Coconut water is good for constipation too, you can get flavoured ones for kids

Dd2 had chronic constipation and rectal prolapses when she was a toddler. Movical and plenty of fluids, including fruit juices helped and thankfully she seems to have outgrown it now.

Sorry Mintyy, I posted from my phone last night and didn't have a chance to look up previous threads (I am sure there will be many!)

Thanks for all those that have posted, some stories have been quite upsetting.

DS was in hospital when he about a year old and the boy opposite had a whole heap of gastro problems bought on by constipation which later developed into a phobia of going. He was so bunged up (inpacted?) and in such a bad way that he had a tube put in and medicine to flush him out that was? Sorry I can't think of the technical terms but I did get talking to his Mum and she advised me to never be complacent about ongoing constipation.

We are with a new surgery now and I am going to be quite forceful when we go, I want this sorted.

My dd suffered badly when I switched milk when she was 8 months.
Basically she one day passed a large hard poo and the problem started. Many trips to the GP and paediatric dr and nothing changed.
Finally at one appointment a locome dr asked to examine her and he found a tiny tear just outside her anus. We couldn't believe it! He prescribed a laxative and cleansing procedure to do for a month and she was so relieved, as were we! The hard stool and caused it and she had suffered so long . She was right as rain after that. Worth considering.

I did get talking to his Mum and she advised me to never be complacent about ongoing constipation.

^ This, in spades. We were fobbed off far too long by our GP. At one point, toddler DS was getting through about 70ml a day of lactulose (and still no benefit) and we would have been so much better off with stimulant laxatives, but it took the paediatric gastroenterologist to sort it out.

Oh yes, the fact you are with a new surgery - make sure you tell them how long it's been going on for. A GP in my old surgery also told me off (gently) for going to see lots of different GPs in the surgery with an intractable problem (me, not DS), as he said it really helps to raise the threshold of concern more quickly when the same patient keeps turning up in front of the same GP in the practice.

I haven't read the whole thread so apologies if I'm repeating stuff that's already been said.

Both my kids suffer from chronic constipation, and have done ever since they were weaned. It's a family thing, nothing to do with diet, just bad luck! They are now 5 and 9, and have been on daily movicol since they were toddlers. It's just part of our morning routine. My 5 year old has it mixed with a tiny bit of water and syringed in like medicine. My 9 year old drinks it in a glass of squash. I have to take movicol too, so I expect my boys always will as well.

Like you I was anxious to get it sorted before they became sufficiently "aware" to consciously withhold it, knowing that passing hard poo was painful.

So that's my advice - daily movicol, solves the problem. I'm a GP too by the way.

Oh dear, currently expecting DC2 and have been wondering what the odds are of another constipated baby. I feel, with hindsight, that I sought treatment a bit late with DD, and was going to ask her gastro what to do if the baby has issues from a young age. Does anyone know what the first line treatment is for a non weaned baby?

...we found Chocolate All Bran (shaped a bit like mini shreddies) made all the difference for our daughter - it seems to really work well to keep things moving and it does actually taste nice too so that's even better : )

Not much to add here OP, except our own experience.

DS was diagnosed after a pretty horrible few days in hospital with acute abdominal pain and vomiting. It wasn't until the consultant descended with her godlike status and entourage that he was diagnosed; with one glance at his X rays. The registrars didn't agree but he healed with Movicol and the next ones were all clear.

Re. the getting him to take it. It was a struggle but we thought long and hard about his personality and decided on the 'down it straight with water and treat with something yummy straight after' option.

I was wondering if anyone can give me advice. I was going to start at post, but this seams like a fab place.to get advice.

My dd is 4, she is terribly constipated all the time. Movicol doesn't work for her, we have had suppositries and now on lactlose sp?

She has been like this for about a year and a half she goes once a week if you are lucky. She blocks the toilet when she does go.

She has a huge tummy, skinny arms and legs but a big football tummy. We have been to the doctors about 30 times I have taken her to a&e twice (because she was screaming with pain) with have seen a pediatrician. All in all nothing helps. She has had blood test apart from anemic nothing shown up. She had a xray and just showed poo compacted.

Also she gets a burning tempature like every 10/14 days ish accompanied by agonising tummy pains. I'm awaiting another app from hospital but been told there is a waiting list. I called hospital last week to see if any app sooner but none. Called my doctor to write another letter regarding urgency which they done.

I feel so sorry for her can any one shed any light?

Smoothies (Innocent) and raisins help DD1 (3.4) stay regular. If I know she is holding onto a poo then I'll take her to a shop and let her choose a toy and tell her she can have it when she does a poo. When we are at home and she is sitting on the toilet holding it in I'll remind her 'remember that recorder we brought for when you do a poo'. Having a pack of chocolate Freddie Frogs to hand helps too .

flippyflapper - she has impaction - and quite severely by the sound of it.

You need to read the ERIC website and then get proper treatment for her.
The chances are she will need years of treatment. It is quite likely that the dose of movicol she was on wasn't nearly enough.

How much was she taking, and for how long?

Flippy - that sounds terrible! One of my DC had this from very young and it was so distressing to watch them struggle, distended tummy etc. My GP referred us to hospital to paediatrician. I finally felt someone took us seriously, lactulose helped but not movicol. As pp said Eric website good. Push for a referal to hospital, we got support from playtherapists etc to minimise anxiety surrounding using the loo. He much better now but only goes 2\3 days but at least no more impaction.

Flippy, has your dd been tested for coeliac? Although it usually causes diarrhoea, it can cause constipation. It can also cause anaemia and the bloated tummy, skinny limbs appearance.

Poor little lovey, she is having a rough time.

Sorry for late reply, I fell asleep and like most nights woken by her crying her tummy hurts!

She was given a full dose something like 8 a day I can't remeber now but we tried for 4 months, did mouthing.

Lactulose she is prescribed 15mls 3x a day still nothing.

I'm exhausted. I'm so worried and im getting no where. im worried about the anemia too and the constant tempatures she gets when she is really bad.

My poor little girl.

Yes been tested for coeliac.

Sounds awful I was in a strange way hoping it was so that we could begin helping her

I know what you mean. I felt the same way.

flippflapper - The huge tummy would be a distended bowel and possibly a distended bladder. (The distended bowel can cause the distended bladder is it can 'block' the area of the bladder with the signals). The poos need to be soft enough to just 'come out'.

If 8 sachets of movicol a day isn't working though there must be something going on.

How much fluids does she drink? Because as far as I'm aware, the movicol just redirects the fluids over to the bowels, but if she is drinking next to nothing maybe there just isn't enough to redirect over?

DS is on sodium picosulfate now, and unlike movicol that gives him the muscle sensation of needing to go, which he wasn't getting before and so we have less accidents now.

But - and this is a big but - seriously hard poo may just not soften.

With DS it was probably a good 6 months of going regularly and relatively problem free (still with laxatives) before we stopped seeing the occasional hard bit of poo that had just hung around in the bowels, and was gradually passed as the bowels slowly shrunk back to normal size.

They just NEVER got soft.

So movicol or another laxative may work for NEW poo that she's forming if it could get to the bowels, but the old hard poo may have to be physically removed somehow.

Have they considered Hirschsprung's disease?

One of mine is now OKish in his 20's. He did a trial of interferential treatment which helped a lot but doesn't seem to be being rolled out after the clinical trials.

My other kid failed every form of oral treatment and has an ACE stoma. He manages OK with that but needs a litre of movicol once a month in addition to his other flushes.

My advice is that not all cases will resolve with oral meds let alone with diet and if your kid falls into that category keep pushing for specialist review. Surgery was lifechanging for us--he was pooing once every 3 weeks by the end despite aggressive treatment orally.

I agree they should consider Hirschprung's flippyflapper. Movicol not working suggests that the bowel is isn't able to move by itself, and that could be a red flag for Hirschsprung's.