6yr old barely continent can't get the hang of movicol and she is coeliac

[alannacityofzorn]

Daughter is having very frequent poo and wee accidents, up to 10 a day. Had been much better when started on gluten free diet but slipped to current state since September, getting awful in last week. Keep giving moviol but is not doing proper poos and won't push. Hasn't,t been properly for three days. Is reverting to old habits of hiding her bottom from me and looking guilty. Unsure what to cut out of diet as coeliac and needs calcium. Unsure if it is potatoes causing problems but in gf bread, gf pasta and gf flour. Unsure if it is chocolate but Xmas and a rubbish time to stop that. Reluctant to go to gp but fed up with quality of life as have to carry lots of spare clothes for her and know where toilets are. It's her birthday tomorrow and unsure if she could make it through a movie may need to stay home and near toilets. Need someone who has been here to say there is a light at the end of the tunnel uncertainty is making me neurotic

[divingoffthebalcony]

So what's the diagnosis? Loose, uncontrollable stools due to intolerances, or encopresis (hence the Movicol)?

[Esmum07]

Take her to the doctor. The wee accidents could be related to the poo issue. DS has a distended bowel and it has taken from three years old until now aged seven, to final start to get somewhere (sorry). The distended bowel was caused by his holding poo when he was in nursery as he wanted to play, not go to the loo! That built up, made his bowel sloppy and so the poo built up and round and round we went. The poo in the bowel then leaned on his bladder causing the signal to wee to weaken so he would wet himself too.

He went on movicol which helped and he has been dry for three years but we cut it back when he seemed to be improving and he got worse again. When he started school he was being changed five times a day at a minimum. He now soils perhaps once every five to seven days so we are getting there.

We have a game of sitting on the loo and blowing up a whoopie cushion. Blowing a balloon or party blower works too as it mimics the push you make when you poo, but the whoopie cushion is more fun because of the rude noise you make each time you deflate it. If you ask kids to push they tend to suck in their tummy. But you try the poo push...you actually push your tummy out which pushes down on your bowel. So blowing makes the same action. Sitting for ten minutes about 15 to 20 minutes after each meal, rocking forward (I get DS to try to touch his forehead to my hand held about six inches in front of his knees but at head height), then rocking backwards and then blowing. Keep it going for as much of the ten minutes as you can. Don't worry if the poo doesn't come every time but it trains the poo to move down the bowel and makes DC feel it coming. DS never runs to the loo needing to go but will go within a minute or two of sitting down now.

He also has two spoonfuls of senna every other day, on doctors orders, as the distended bowel meant he gets no signal that poo is coming so the bowel is sluggish and the senna does the work. He has one movicol every week day morning and an additional afternoon movicol at the weekend.

ERIC is a great website that gives lots of tips.

Movicol works well but you do need to alter doses to suit the child and need about three to four days between any changes as it takes a few days to work.

Don't give up hope. DS isn't there yet but he tries really hard and it isn't his fault. We just work with him and, since we've accepted that this is the way it is and have made loo sitting into a game with rewards he has got better. DS loves getting cash now so we give him 10p if he poos on the loo, 10p if his pants are clean at the end of the day (if they aren't clean we ignore it, just help him clean up and say never mind), he also gets 2p if he has soiled but has told us as he has a habit of being so embarrassed that he doesn't mention it. He knows he should tell us or he will smell or get sore but he is so embarrassed and feels bad so we reward him for overcoming that. And of course we never never tell other people. If he soils when we are out it's a quick trip to the loo, change pants, chuck the others away and that's that.

He takes spare pants for his school swimming lessons in case he finds any soiling. We have spoken to him about how he can best sneak to the loo to clean up and change pants and he's very relaxed about doing that so his bottom's clean when they do the communal change.

It will get better but can take time. Your doctor may be able to refer you to a children's bowel and bladder nurse. Ours was helpful as she got the school to help DS a lot, to the extent that they got an additional TA when he started school to ensure he was taken to the loo as quickly as possible to get changed.

[alannacityofzorn]

Esmum07 thank you so much for your reply. Will go to gp. Have been getting daughter to make grunting noises to push the poo so will try blowing instead. When she usually goes the poos are so long and wide have to use a bucket to flush. I think my reluctance to give her too much medication as I may make her accidents increase is part of the issue. Bowel seems very stuck. Family history of bowel problems on both sides of the family. Daughter doesn't,t appear fased by much and doesn't,t seem to mind, suppose to her it is normal.

[divingoffthebalcony]

So it's encopresis, then? Please don't be reluctant to give her the Movicol. If her bowel movements are that huge then her bowel is definitely stretched from chronic constipation. It's a common misconception that a daily laxative makes the bowel "lazy" but the opposite is true for children like this. If you don't treat it AGGRESSIVELY then you'll be in the same boat years from now. And a consultant told me that recently.

You won't make the accidents increase. At the moment, liquid poo is leaking around the big poo blockages in the bowel and then leaking out. You need to shift these blockages and then prevent them from forming in the first place.

Being coeliac I'm guessing you see a paediatric gastroenterologist, but if you don't please ask for a referral. My DD sees one 2-3 times a year, and it's so helpful to discuss symptoms and dosage changes with an expert (unlike a GP)

[iwouldgoouttonight]

I echo the brilliant advice Esmum07 and divingoffthebalcony have given. My DS is 8 and has the same issues. It's taken us until now for the consultant to give him an xray and show he is chronically constipated, and now he's on a high dose of movicol (12 sachets a day) to clear the blockage.

After the initial very loose watery poos while the movicol was clearing his bowel (during which time he had some dreadfully messy accidents) he's made noticeable improvements to his wee and poo accidents. As others have said, it's likely the bowel is full of poo and become misshapen, lessening the feeling of needing to go, and also pressing on the bladder meaning wee accidents.

Please speak to the doctor and keeping asking and pushing them until they help, I really regret not having been pushy enough early on and its got until DS is 8 for them to take it seriously.

And use mumsnet, I've got loads of really good advice from here. Even if it's just to vent when you've washed poo from the sofa again and done your 3rd load of washing of the day!

[willowisp]

What about changing her source of fibre & adding soluble fibre, so gluten free porridge for breakfast ?

Will she eat soaked dried apricots ? And/or drink soaked linseeds ? (2 tsp soaked in inch of water for 10 mins, then drank with water, juice, squash). Also wet fruit like pineapple, kiwi with breakfast, apple & veg like carrots & broccoli.

My daughter has terrible constipation & we didn't get on with lactulose or movical, but a prescription of sodium docusate & above changes resolved the problem.

The so douce docusate works by pulling water onto the stool, which meant it was difficult to hold on to & easier to pass. It also didn't go explosive like lactulose.

[willowisp]

www.patient.co.uk/medicine/docusate-sodium

[iwouldgoouttonight]

Forgot to say about coeliac, I'm coeliac but DS has been tested negative, but he does say his tummy hurts sometimes when he eats bread. So we have cut down on the amount of wheat/gluten he eats and that seems to have helped a bit too. Our consultant said it doesn't matter what is causing the constipation, the treatment will still be movicol. She also said movicol doesn't have any side effects and the bowel won't end up relying on it so its fine to take it longer term if necessary.

[alannacityofzorn]

Many thanks for the useful info. Yes she has a paediatrician and a gastroenterologist, the paediatrician fell asleep during our first appointment and gastroenterologist man didn't,t seem that interested in the constipation only saying it would probably not resolve on gf diet. The weird thing was she was fine in summer months on gf diet. Feel being at school where she doesn't drink as much and feels she can,t stop to go to the toilet has worsened things. Eldest dd has had tummy pain on eating usual breakfast cereal so are trying cutting that out. Took 30 minutes and bribes of chocolate to get her to have two movicols this morning, hope don't need to go to mega doses.
Used to eat raisins and apricots but no go at present. Eats lots of veg. Spotted the linseed smuggled into her cereal and refused to eat.
Is the X-ray the only way to see if bowel enlarged and hard bits? One gp offered to go digital rectal exam- don't like the sound of that at all.
Will see if gp can refer to bowel specialist. I don't really know what gastrologists do- are they bowel specialists?
If coeliac affects small intestine how come large bowel affected or is it unrelated?

[willowisp]

Ok you've got to get tough her.

I saw a paediatrican & he was crap.

Change your child's diet & you'll see a massive difference.

None of this trying & bribing with chocolate. Do it - porridge (gluten free) , add sugar, you can soak apricots & purée them & add to yogurt.

Tell the school she must have drink breaks. Add cucumber to her lunch box, Apples, satsumas. All contain soluble fibre.

Same with teas, lots of veg, salad stuff. If she eats all the above, then yes, give her a couple of choc buttons. Or choc covered raisins.

The beauty of sodium docusate is you can add to drinks & barely notice it.

[3littlefrogs]

OP - please read the ERIC website advice and persevere with the movicol.
You must get this sorted out and you need to treat aggressively and consistently probably for a couple of years.
Yes - a plain abdominal Xray is the only way to see high faecal impaction.
Yes - faecal impaction causes overflow and wee accidents.
If you really can't cope with movicol, you will need to do long term treatment with docusate and senna.
Your DD probably doesn't push because she has lost the sensation in her bowel and rectum - it takes years to retrain the bowel.
You have to take control and help your DD - she is too young to manage this herself.

[divingoffthebalcony]

Gastroenterologists specialise in the digestive system. There's no such thing as a bowel specialist so if you see a gastro doctor already, you don't need to ask for a referral to a bowel specialist. Shame the one you already see isn't interested in the constipation - I'd explore seeing a different consultant or a nurse specialist as mentioned above.

Can't see what could be learned from a digital rectal exam, and I'm mystified why the GP thought that might be helpful. This is why I prefer to talk to a specialist rather than a GP (no disrespect to GPs, it's just impossible to be an expert in all areas).

Hard to say whether the constipation is related to the coeliac or something separate - that's what the gastroenterologist needs to work out.

[iwouldgoouttonight]

How do you give her the movicol? My DS won't take it mixed with water or juice because he can still taste it, so he has it with lemonade. I know lemonade isn't good for you but for us its the lesser of two evils - at the minute getting the movicol into him is through most important thing, and his diet is healthy otherwise.

An xray is the only thing that will definitely show faecal impaction. We learnt this the hard way after having lots of other investigations which didn't show any problems, and it was only after I burst into tears in front of the consultant and said 'why can't just just xray him' that they did it.

I agree with you its worse when they're at school. We have regular meetings with the teacher and the head and we have certain things in place now (it's taken A LOT of asking and reminding to get this far) so DS now is allowed to use the disabled toilet so if he needs to change his dirty pants the other children don't know about it. They give him a glass of water every two hours, and treat it like medicine, they are not allowed to miss it, in the same way that if a child had to take medication every two hours they would have to give it. We've also agreed that DS can get up and go to the loo whenever he wants, he doesn't have to ask (he sometimes needs to go a lot and feels too embarrassed to ask).

But I agree with the others, unfortunately you do have to get tough, with the GP, the hospital, the school, you need to get everyone on board.

[alannacityofzorn]

Have been to gp who thought she felt some hard areas in her tummy though dd very ticklish and was laughing and saying ow. Have upped the movicols and loads of poo yesterday but less today, planning further increase.(on 4 a day) Have been reading up and feel this has probably been the issue for about 4 years. Planning to meet with teacher next term and get her health care plan at school changed, good idea re water treated like medication. Did ask for a card that she could go whenever she wanted but either dd or teacher misunderstood and was being used for saying she had an accident.
She has her movicols with Ribena at present. Will try purée apricot and she already has cucumber and apples. Got some puffed brown rice cereal which she ate this morning. Now I,m aware of the issue will try to get on top of it.

One question- how runny does her poo have to get on movicols to unblock the hard bits? Seems a lot of guessing re doses or is this because I haven,t seen the right person.
Not on oats yet, will try with rice porridge.

[3littlefrogs]

If you think this has been an issue for 4 years it will take up to 8 years to retrain the bowel. You need to take that on board and commit to it.
It is so important to sort it out though because the knock on effect is depressing and socially isolating for a child.

[alannacityofzorn]

Wish there was a magic wand, am trying my hardest.

[3littlefrogs]

Don't give up.
There is no quick fix, but it will be worth the effort over the long haul.

Esmum07 has explained it very well - re-read what she has written and take heart. You will be able to put things right, it just takes a long time.

[3littlefrogs]

Don't give bran or high roughage foods because these just make the problem worse. Aim for soft, not too bulky stools, so stewed fruit, cooked veg, small quantities of oats, prunes, lentils, pulses etc are good.

[divingoffthebalcony]

3littlefrogs is right.

Also, I have one of these children now but I WAS one of these children myself. And through no fault of their own, my parents didn't manage my constipation very well during my childhood, so it blightd my teens and my twenties and a portion of my thirties too. I will be on Movicol for life (and believe me that is preferable to suffering unmanageable chronic constipation) because my sluggish gut will just never be normal.

Dealing with it is not fun, but believe me it's preferable to not dealing with it.

[willowisp]

Please do request a prescription for sodium docusate. It made a massive difference - it makes the contained pops softer, my DD's problem was she would hold on, well you can't with this stuff.

It might be worth seeing if she can drink something like Lepicol, which you buy from Holland & Barret. It's psyuillim husks & she could have a tsp with favorite drink - let it swell & then drink fast & follow with water.

Constipation IS the result of the wrong diet. Once corrected, changes will happen quickly.

I don't think brown rice cereal is going to help - you need porridge, which is soluble fibre.

[3littlefrogs]

willowisp - sometimes it isn't just diet. However, I agree that poor diet can be an initial cause of constipation.
Witholding due to physical or psychological issues causes impaction with overflow, causing pain and more psychological issues.
Diet alone will not solve the problem unfortunately.
Once the neurological damage to the bowel has happened it takes medication and dietary changes together with a consistent approach that deals with the emotional and psychological factors over a long period of time to improve things.
Conventional solutions to simple constipation such as increasing roughage are counterproductive in this situation.
Bulky stools would be disastrous at this point.

[alannacityofzorn]

Many thanks, have reread everything and taken notes. Have been getting hang of coeliac diet, will now try to slowly increase fibre eg using different flour mixes and more pulses. Did up her milk due to coeliacs needing it, this may have aggregated things, she hadn't been drinking enough water at school.

[divingoffthebalcony]

It really isn't always the result of a poor diet. My daughter, for example, has been constipated from birth. Diseases like Hirschsprung's aside, it's very common for children to have chronically sluggish bowels with no known cause.

[willowisp]

3littlefrogs, a holistic approach is needed to resolve this.

At no point have I suggested roughage & agree it's the worst for this situation. Soluble fibre works differently & with medication works very quickly. My DD suffered very badly - horribly for about a year, but doing as I have suggested got it under control amazingly quickly. In fact we never looked back.