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Children's health

Will he ever be able to stop taking movicol?

17 replies

PJ67 · 18/01/2015 07:43

My ds is 7 and has been on movicol for nearly two years. This was due to occasional soiling ie every couple of weeks. He seems fine when on one sachet a day but every time we try to stop it he has another accident. I thought the time on the movicol was meant to let the bowel return to normal and thought we should be able to stop it by now. What is causing this and has anyone been successful in coming off it? I'm trying to get him to sit on the toilet before bed every night whether he feels he needs to go or not and this often works so I stopped the movicol about 3 weeks ago again to try but he has had the soiling again a couple of times since. Should he be referred to a specialist or is there no need for this?
Thanks

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lavendersun · 18/01/2015 07:57

We have managed to come off it after more than three years - we have a local apple farm which presses its own juice. A glass morning and evening has meant that we have stopped movicol. I still have to monitor it closely though and give an extra glass if necessary.

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JoandMax · 18/01/2015 08:02

DS2 was on for just over 3 years, like lavendersun we use freshly squeezed apple juice! He has one in the morning and one after school and that pretty much keeps it under control.

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lavendersun · 18/01/2015 08:02

Must add that we see a paediatrician anyway and have had tests for coeliac etc.

Despite 7-8 portions of fruit and vegetables a day the only thing that has worked is the apple juice.

We had tried other things including things like Cawston Press apple juice but nothing worked. When we go to the farm shop we can see the crushed apples leaving on a little conveyor belt - very small scale and just cloudy apple juice, nothing else.

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PJ67 · 18/01/2015 08:13

Hi. Thanks for that, the apple juice is worth a try. Joaandmax, do you buy it or do it yourself? We often make smoothies with a blender but not sure how I would get pure apple juice! How lucky having a local apple farm! Can I ask you both how much movicol your kids were on? My ds was on one then after about a year I gave him one every two days. Now I'm wondering if we should go on more incase his bowel isn't completely back to normal.

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lavendersun · 18/01/2015 08:21

Lots at the worst of it - 6-8 a day, 2 a day before discovering that the apple juice worked.

The biggest problem was getting her to drink enough of it (I now spend £15 a week on apple juice, would be a lot more but I buy it in bulk!).

Odd though, she usually has an apple, 2 pears, fruit at school and at least 3 lots of vegetables a day, probably more with school lunch, loves lentils, eats seedy brown bread. Dessert is usually yoghurt with whatever berries we have in the fridge.

Nothing worked until the juice.

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missmakesstuff · 18/01/2015 08:26

Our dd, nearly 5, is on movicol and has been since she was about 2. She's had problems with constipation since she was on solids at 6mnths.
She is now down to half a sachet every other day, with a poo being produced most days! This always takes a serious amount of sitting on the toilet, cajoling and encouragement...it's tiring, especially as anything can upset this routine. We are still not back into the routine after Xmas and a tummy bug.
what helped us to get things significantly better ( because believe it or not, this is better!) was the following:
a daily probiotic, not yakult or anything like that, but proper tablet or capsule one.
daily multivitamin
daily tablespoon of linseed ( hidden in breakfast usually. Brilliant stuff! Aldi do it, in pouches, last ages, plain and with berries etc.)
Senna, perscribed by the consultant once we got down to a sachet a day. She has this but I really don't know if it works the way it should.

Its taken a while, we've been doing this for nearly a year and whilst we've gone from nearly daily soiling and wetting which made me cry most weeks with desperation, it's now only an occasional thing, although she's still wet at night and occasionally soils at night too. We keep going with the routine and duet changes, then if she get bunged up we bring out the big guns - more movicol, more henna, prune juice, special porridge with bran etc.

We've had to change her diet - no white bread, rice or pasta, fruit as much as we can, oranges, pears, apples. Egg only every few days. Lots of encouragement, games and breathing/blowing bubbles to get her to relax on the loo.
I can't see an end to it to be honest, I think the diet etc will have to stay, but that's fine, we just do it now. The movicol, we have been down to half a sachet every two or three days before, so the're is hope.
I would suggest dingbat very gradually and looking at his diet too. You are right, I thought when her bowel reduced down it would be over, but it isn't happening for us, sometimes her poos are bloody gigantic!
Good luck though, it's a nightmare, we have her ds due in a few weeks and I'm dreading more poo, and him being the same. I would have thought after 5 years I could stop carrying around wipes and spare clothes, but here we are doing it all again!

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missmakesstuff · 18/01/2015 08:27

Doing it, not dingbat. Stupid phone!

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lavendersun · 18/01/2015 08:29

miss makes a good point, we restrict eggs to two or three a week but she was allergic to them at the start of it so it wasn't an issue back then.

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missmakesstuff · 18/01/2015 08:31

Also, we got a referal for a consultant at about 3, that helped a bit, but they have never suggested coeliac tests or any diet changes, just perscribed sodium picosulphate, which makes her vomit, and senna.

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JoandMax · 18/01/2015 09:10

We juice ourselves and red apples work better than green. I sometimes add some grapes in too so its nice and sweet, DS2 was tube fed and has food quirks so getting him to have anything remotely 'yucky' is difficult!

He was on 2 sachets to start then just the 1 for the last year then about half for a few weeks with the juice then stopped completely.

We also do daily yoghurt drinks with the probiotics as that also helps to keep him regular.

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soupmaker · 30/01/2015 20:37

Our DD1 has been on movicol and sodium picosulfate for about 3 years. She's 7 and only in the last 6 months has she stopped soiling at least twice a week. I feel utterly mentally scarred by the hell of it all. She's still wet most days due to urge incontinence and is still very wet at night. She will not eat fruit apart from the odd apple but eats lots of veg. We've been told she'll probably be on movicol for years. We have a DD2 who is 18 months and I am absolutely dreading toilet training and the thought of her having the same issue. I long for a day when I no longer carry changes of clothing and wipes.

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nocoolnamesleft · 30/01/2015 22:37

Have you tried sitting on the toilet about 1/2 hr after meals, rather than bedtime? Most people have the best chance of a decent poo after eating (gastrocolic reflex sends a wave of pushing down the colon). Also, how soft did you get his poo? For the bowel to return to normal, it seems to really help to not just have them pooing every day, but for them to be passing soft poo every day (scrambled egg to soft sausage).

Almost all of them seem to get there eventually...but it's a heck of a journey to get there.

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nuitdesetoiles · 04/02/2015 13:36

Hi d's has been soiling for a year due to dreadful constipation. No sensation in rectum etc. He's just been started in movicol at first 4 a day but I've reduced it down to 2 because of awful diarrhea. School not particularly helpful, ds (5) getting v sad and anxious about it all. V clingy of me. Sorry to hijack thread but it seems very similar issue would be grateful if any advice re diet. He has a paediatrician. :-(

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PJ67 · 05/02/2015 22:43

Hi. We've started on the apple juice in the form of smoothies every night. He's had a couple of accidents but only a tiny spot on his pants. When he was taking the movicol every day his poo never actually got that soft and he still seemed to strain a bit, maybe that's why his bowel hasn't recovered? Thought about cutting out wheat but this seems quite difficult.

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PeanutButterOnly · 08/02/2015 20:29

DS has been on movicol paed from potty training at 3, when he developed all kinds of anxiety related toilet issues, to now at age 10 in year 6! It's part of our life! The doctor is very reassuring about it being so safe. I would rather that than risk him being an incontinent teenager with his bowel losing its function due to constipation. I see it as supporting him through something which has turned out to be a very long term but not serious condition. He is improving somewhat now but in the past has had mild but daily bladder incontinence and soiling. It's been tough at times. There was the time he'd had an accident at a play date at age 8 and at 9 when he got in a complete state on a school residential. But now he's older I don't think about it too much.

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lavendersun · 08/02/2015 20:33

OP, just saw this in active conversations ... we are back on 4 movicol a day plus apple juice right now, no idea why but it seems that the apple juice was a temporary fix for us.

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lavendersun · 08/02/2015 20:38

Also, back to leaking here, such a rotten thing to worry about when you are nearly 9.

I have taken to buying pants from Tesco and throwing away any that are badly stained as I know from experience that I can't get them 100% clean.

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