Wanted experts on chronic constipation, advice on management and when to start seeking help

[alannacityofzorn]

My daughter is coeliac and has been gluten free for a year. She has always had difficulties with constipation. We have increased the amount she drinks to 1200ml, she is having double amount of fruit and veg. She is always on the verge of getting blocked and it takes very little to get stuck and not poo for days.
She is on 1 or 2 sachets of movicol which we increase as needed to higher levels. Just got prescription for senna to get her bowel moving.
Have reduced then cut out lactose for two months to no effect.

Waited 5 months to see school nurse., not much use.
Paediatrician has cancelled appointment twice to end July.
Under gatroenterologist who doesn't seem interested.
Under dietician not getting anywhere.
Waited two months for constipation clinic and now very disgruntled. Told to drink more, to lean elbows on knees and relax! Is that the extent of medical input? Got senna as I asked for a bowel stimulant (was offered lactulose and I declined as another poo softener). Blood test done to check electrolyte levels. Told they don't X-ray.

Dominates whole family life. Spending up to an hour in evening in shorter sessions getting her to blow,rock, make poo faces.

How do we know why it's happening? Is it another food she needs to stop eating.
Is any more damage being done? Investigation is feeling her tummy and she always giggles even if really bunged up.
Is movicol and possibly senna the best management. She has a rash on back of knee that appeared similar time to upping regularity of movicol and describes feeling sick, bottom very red when on higher doses.
Referral to dermatologist in process.
All seems very unscientific guess work, loosing faith in medicine. Despite despairing letter constipation nurse did not ask either me or daughter how we were managing.
Need mums with experience to guide.

can she have bran as a coeliac? i get a bag of jordans bran from local health food shop, a tbsp sprinkled over cereal keeps us regular, how about prunes? or even better prune juice, works like dynamite in our house

sorry, its wheat bran isn't it. maybe there's a different bran? oat bran?

My hunch is that you need to increase her regular dose of Movicol until she's passing really soft stools daily (think a type 6 on the Bristol stool chart).

She may also be quite impacted, so doing the Movicol disimpaction regime would mean you could feel confident her bowels aren't horribly backed up. Then start again with the regular daily dose.

Wouldn't recommend bran personally. Unless you're drinking gallons it can set in the gut like concrete and make constipation much worse.

She will eat raisins but not prunes. Fairly hard to sneak prunes into diet unnoticed. Has chia seeds which go gluey when wet. Tried linseed mix but she spotted and refused to eat. Can't really do bran and have been trying for soluble fibre in fruit and veg.
The continance nurse said if she was doing formed stools she wasn't impacted but I'm sure someone else said differently. Can do regime of upping movicol but a week later despite keeping taking it can be in same situation. Bowels sometimes don't seem to want to move.
Really wanted reassurance that this is best management and it will eventually be fine. Blood tests came back fine. Have senna to try for next time she doesn't go.
All mighty stressor and doubting whether I need to get more help or chug along as we are, adds to stress

Movicol really does work if you get enough down them. It's definitely the best treatment in my (sadly quite extensive) experience.

What would happen if you tried giving three sachets a day from now on, do you think? My DD has been on three sachets daily since she was about two years old. If I drop the dose down to two sachets, even just for 1-2 days, her bowels grind to a halt very quickly. Then I might have to increase the dose quite considerably for a couple of days to get things moving again. Trial and error!

Try having prunes with natural yoghurt, which makes the taste less intense. Also, I find kiwi fruit and pineapple work well :)

or prune juice mixed into porridge to sweeten it...big fan of prune juice

You can still do normal looking poos and be constipated (I speak from years of experience with DS). There can be a blockage and the bowel becomes enlarged and misshapen so other poo goes around the edge of it.

DS isn't coeliac (I am) but he does manage better when he cuts down on bread so I think he has some sensitivity to gluten. The only thing that's worked for him is to do the clear out dose of Movicol (up to 12 sachets) and then stay on a high dose indefinitely (was 8 a day now down to 6 a day). We've also been prescribed optifibre.

We were told that some people just have a slower transit of poo through the bowel and that DS is likely to be on long term laxatives. I don't know if this will be the case because our consultant and nurse have been rubbish. We ended up making a complaint about them. I've found the only way to get the support you need is to keep nagging. Phone, leave messages, ask to be referred to specialist, etc. Its tiring and frustrating but it's the only way we've started to get proper help.

How old is your DD by the way? Does she have any faecal leakage as a result of the constipation?

Seaoflove she will drink more movicol when needed. Did big doses Easter and again half term so currently ok(just).She seems to be getting side effects on higher doses v red bottom, has skin rash and feels sick. Poo is not hard but doesn't come out so thought needed something to get bowel moving. Above symptoms are vague and sickness could be when v constipated. Have got through a mammoth amount of strawberries so may leave it a day to up the dose.
Iwouldgoouttonight thanks I knew I'd heard could do formed poos while constipated. Have not heard of optifibre before. Have you found anything which explains what is going on for young children? Dd is 6. Have found dr ranj poo song but not much else. Did look at Eric site. Was hoping for gold standard of treatment on what to do as all medics suggest is water and medication. No one has asked for charts of accidents/ consistency of poos.
Being young there is also a behavioural side but she is trying her best most the time.
Yes she does get leakage usually towards end of school week. Also has wee accidents as poo seems to block signal so she has to squeeze the wee out and can have an accident half hour later. New system at school to get her to drink loads, worked for two days then stand in teacher, ahhhh!
Which specialist should I be asking for?

We've been seeing a specialist urology nurse for the past four years (Ds is 8 and has regular overflow leakage and wee accidents). The nurse basically suggested what you've also been told, upping the water intake and keeping on movicol long term, with clear out doses over school holidays (to avoid really messy accidents in school).

The correct process from what I understand is:

• Referral from gp to bowel consultant
• Xray to establish the extent of the constipation
• movicol clear out
• Second xray to see if it's now clear
• maintenance dose of Movicol long term
• once the bowel is clear and stays clear it will gradually get back to working normally (as it will have been stretched due to impacted poo) but in the meantime the feeling of needing to go might not be there
• we eventually got to see a bowel specialist and he has prescribed continuing a low dose of Movicol, three doses of optifibre a day (this thickens the poo into a form that is easier to push out) and 20mls of senna each night to get the bowel working the following morning.

Touch wood this is working for us so far. To be honest we've not had a good experience with the hospital and I'm sure it's taken much longer to sort than it should have done. We also have to regularly go into school to remind them that DS has to finish all his drinks every day (they remind him for a few days and then they seem to forget about it).

We also keep a record of when poos happen just to see if there is any pattern between things he's eating, etc.

There are some people on MN who have been really helpful when I've asked on here for advice so keep posting of you need support.

Also, there are some information leaflets aimed at children on the Eric website, but I've basically found it best to read as much about it as I can (Google encopresis, etc) and then tried to explain it to DS in simple terms. He gets very upset about it though, and thinks he's never going to get better. We didn't find reward charts very successful but we now give him 50p for each poo on the toilet, which is working a bit because he can add up his money each week and see how well he's doing and decides what he can buy (your DD may be a bit young for this I guess).

Iwouldgoouttonight many thanks for your replies. Least I know what to aim for when speaking to gp. In theory she is under gastroenterologist so May badger him.
Am paying 5p each time poos in loo which she saves up for little people. Reward charts didn't make much difference.
Soldiering on with washing......

We got given Ducosate. Out consultant said that in her experience there were some people that movicol just didn't work for. Once we started on that things shifted!

tried 5 mls of senna once on friday and poo poured out of her in very messy runny stuff for two days- I am presuming this is not a normal reaction ? all last week doing very wet poo splats. Has coincided with week 3 of upper liquid to very high levels.
dd in tears after school as had pood in pants after lunch then not dared to go back to toilet, teachers asked repeatedly if she had been but she denied, was told she would get a yellow card (bad).
did try and emphasise positives to teacher- is pooing and at a similar time, they agreed to send her to toilet after lunch.
two steps forward, two steps back.

How is your DD getting on now alannacityofzorn?

My dd continues to have difficulties. She has started on ducosate since November, took 4 days before it had any effect. She seems to be ok for a bit then everything slows right down even though she has the same amount of fluids. Have been upping the medication this week as nothing happening. Have tried cutting down lactose, cutting out lactose, cutting out dairy and soya… depends which dietician we see as they have different ideas. my gut feeling is its an issue with a food group but not an obvious one. Had lots of bacon and ham beginning of week so am toying with idea of issue with nitrates. But also may have issue with fructose (loads of apple juice to wash down optifibre and fruit) or potato (all school meals potato based). Did have a bowel transit study in the summer (slow bowel) and paediatrician has changed and is more interested. Having allergy testing in January- I gave her psyillium husk for 4 days and she came up with very dramatic spots all over her legs for a week. Also reacts to limonene in bath cleaner so avoiding it in toothpaste but doesn’t seem to have made much of a difference. Kids in school are I think beginning to comment but only a guess from the phrases she uses when playing. Many thanks for asking. any one with a spare magic wand to make it all go away? interestingly skin cleared up a lot off the movicol

Have you tried Cranial ostheopaty? My dd was very bad when she was 3; I was very stressed which didn't help; I took her to the osteopath and it helped; our problem was that she was holding it; every time I saw her holding it I would take her to the loo; I used to tell her poo needs to go out or you will get sick; I tried not too make a bit fuss of it and she got the message eventually.

Tried banana powdered probiotic and chocolate ball ones which were pricey and didn't seem to do much. She sometimes holds it, sometimes seems to have no idea or sensation, does try to blow, rock, squeeze but gets fed up with time it takes. Today she sang as loud as she could, with me making a hasty exit, and pood, neighbours will love us! May consider osteopathy. Also has ground linseed.

I am an adult coeliac and suffered from constipation but thanks to my hospital coeliac nurse I was offered a solution. Optifibre, and it worked first class. Don't know if it is suitable for children but your coeliac clinic, at the hospital, should be able to help. It is available on prescription.