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Movicol/childhood constipation specialists over here please!

(25 Posts)
PippaFawcett Sat 24-Oct-15 20:42:33

DD, 6, has had constipation issues for years. It comes and goes and usually we manage it with diet, exercise, water and the odd dose of lactulose when needed. She regressed just before the summer holidays and began soiling every day again so I got her back onto Movicol.

She is now taking eight sachets a day which keeps her bowels moving every day but hasn't helped the soiling at all and if anything, it is worse than ever. Very dry, flaky soiling, sorry for tmi, which makes me wonder if I still need to clear out her bowel with even more Movicol to 'reset' her bowel. But how could there be old poo in the bowel if she has been on eight sachets a day for months?

Anyway, I plan to go back to the docs but tbh I seem to know more about this than she does anyway. So, should I give her a higher dose now it is half-term to try and clear her out and reset her? I have already tried reducing the sachets which solidifies the movement but doesn't stop the accidents. Any advice welcomed.

NuzzleandScratch Sat 24-Oct-15 20:59:56

No advice as such, but just wanted to say we're going through the same. Dd is now 5, and after thinking we'd cracked it earlier this term, she went back to daily accidents about a week ago. She started on Movicol earlier this year, but we're down to 1 sachet daily. The recent accidents were really soft, so we're actually just trialing 1 alternate days.

From the doctors we've seen so far, they feel it's mainly behavioural, but we've got an appt with a paediatric gastroenterologist in a couple of weeks, just to rule out any underlying problem.

Not sure this is quite the same as your dd, but just wanted to post to say I know how stressful the whole thing is. I used to try and wash the soiled pants, but recently I've started binning all but the lightly soiled ones, as it's just so unpleasant. I feel we'll never be free of all this, and poor dd2 is still in pull ups at 3.3, as I can't face the prospect of dealing with 2 lots of accidents.

iwaly Sat 24-Oct-15 21:04:09

I am not an expert but I would imagine it will take some time for accidents to stop even if she was cleared out. My DD had problems and took Movicol and I remember the specialist nurse (much better than a GP - can you ask for a referral?) saying that the bowel had lost the sensation so DD would not always know when she needed to go. She said the rule of thumb was that however long she had been having these accidents, it would take that long for her to recover. We had to be incredibly strict with diet and fluid intake - lots of fruit (except bananas which were banned) and smoothies etc. Hot weather in May/June and school summers made it worse as I think she did not stay hydrated. Also had to try and make sure she "went" every day though we ended up with a pattern of every other day which I think is just how DD's body works.

hugsarealwaysneededhere1 Sat 24-Oct-15 21:06:39

Ditch the movicol and ask to move to picolax. It's much easier to take, gets it all out and creates much better regulation.
Good luck x

PippaFawcett Sat 24-Oct-15 21:07:16

Thank you for the reply. DD's toiling issues started when DD2 arrived so I think it started as a behavioural issue but now I think she just has bowel issues. She was fine for over a year until it started again before the summer. I make sure she has plenty of fruit and veg etc so I feel like we are doing everything right that we can.

I am thinking of asking for allergy tests/a scan to see if we can find anything else. I am so worried that someone will spot the accidents at school and tease her.

We use 'Dry Like Me' pads in her knickers and I change them and bin the knickers if they are still bad around it as that definitely helps. I hope things improve with your DD, it is so stressful and worrying.

If it is any consolation, DD2 potty trained in a few days and has had a handful of accidents since then so it might be a walk in comparison for you as well.

PippaFawcett Sat 24-Oct-15 21:10:07

Thanks for the other posts. I have never heard of picolax, I will look into it and definitely see about asking for a referral to a specialist. She has her free school dinners and teas at the childminder's so I have been wondering about stopping both of those so I have complete control over her meals as well but it is hard as I work ft and obviously the free school dinners save us money but obviously I would rather she stopped soiling!

NuzzleandScratch Sat 24-Oct-15 21:41:49

Thanks Pippa, good to hear about your dd2. She's actually done a few poos on the potty recently, which dd1 never did, so I'm hopeful! I've also worried about other children becoming aware of the situation, but the only time so far that has happened was when she was on the higher doses of Movicol to start with, and had to wear pull ups. The teachers were fantastic, and the school made sure they were all aware, so they could step in if there were any issues at playtime. The other parents who know about it have been great too, playing down the pull ups, and telling their children to be kind. Fortunately I think at that age, they tend to be quite accepting of things.

Sounds like you ought to push for some further tests, as 8 sachets is a lot, especially if her diet is good too. Dd's diet isn't great, but has improved.

PippaFawcett Sun 25-Oct-15 06:50:51

I am glad the teachers are being good, ours don't seem to give her much support although she is allowed to go to the toilet when she needs to but she still has to ask first which I found a bit annoying as she is a very studious girl so I don't think she would take advantage of being allowed to wander off to the loo but that is the teacher's decision I suppose.

I have been reading old threads about this where it is recommended that all treats and white carbs are cut out, DD's diet doesn't do that so now I am wondering if her generally healthy and balanced diet is actually part of the problem. Our GP told me not to cut anything out or to limit anything.

iwaly Sun 25-Oct-15 12:33:40

Our specialist was more concerned about fibre and hydration. So white carbs are obviously not good in terms of fibre - we used wholemeal bread for example. We had to complete a food/drink and poo(!) diary for a week before we went there so I guess the advice would vary depending what your normal diet was. But I know we had to cut out bananas which DD did like, and switch the bread and increase the number of drinks. DD didn't eat a lot of sweets at the time so that wasn't such a issue for us.

Twooter Sun 25-Oct-15 12:37:40

We put our daughter on a probiotic. Symprove, which seemed to help a lot. Still needs Movicol but on a much lower dose.

Pixi2 Sun 25-Oct-15 12:44:05

Waves hello

I'm not an expert but Ds has had problems going to the loo since weaning. Movicol has been in our lives for bloody years.
He's on limited dairy (a yoghurt and a piece of cheese a day. Soya milk, soya butter etc).
He suffers with tummy aches too. We've had to be careful with starch. Anything with potatoes/potato powder/potato starch is out although we slip up sometimes. We do use sweet potatoes though and make chips out of those. He also can't eat bell peppers and tomatoes (they come from the same plant family as potatoes).
Everything is wholemeal, bread, brown rice, wholemeal pasta etc.

Our first consultant was amazing and diagnosed a potato intolerance with further investigations to be done. Her replacement dismissed us from his caseload and said no such condition existed and I was being overprotective. Until he's gone I'm loath to revisit the hospital again.

PippaFawcett Sun 25-Oct-15 14:32:44

Hi everyone, Pixi that is a very annoying about his consultant. That is interesting about potato - DD eats lots of tomatoes and I have never thought that they were in the same family.

Fortunately DD doesn't have any problems with tummy aches, just soiling and a very noticeably rounded tummy.

PippaFawcett Sun 25-Oct-15 14:37:13

Twooter, can you buy that over the counter/in a supermarket yourself? I might give it a try - nothing hurts I suppose!

Iwaly, were there any foods in particular that were recommended? DD is very good and will try most things.

I am tempted to take her off the free school lunches so I have more control over her diet.

hugsarealwaysneededhere1 Sun 25-Oct-15 18:15:51

In all honesty, as our professor of gastro (lucky us) explained, in most cases of behaviour based bowel issues, diet will have little impact. In fact a high fibre dirt makes it worse!

You need to clear the bowel out, not with a softener, but with a medication like picolax which will cause the bowel to move the poo on! If timed well, this will be once a day then you are done and no more issues at school.

PippaFawcett Sun 25-Oct-15 18:24:37

Hugs, I always encourage fibrous (spl) food as I know high fibre can ironically make it much worse. No Weetabix here!

I read on other threads that picolax does clear out the bowel but that unless the bowel is retrained then it will build up again. Has that not been your experience?

What else does your Professor say? I'm serious by the way, any nuggets of help are gratefully received!

iwaly Sun 25-Oct-15 20:05:20

Well we did go for wholegrain cereals as well as wholemeal bread and were told Weetabix was ok (though DD not fond of it so we had other plain wholegrain cereals with sliced up fruit for breakfast). A big thing for us was smoothies and diluted juice drinks as DD just would not drink enough water.
But DD had more of a medical issue not a behavioural issue and still has to be careful even now several years later. There is a noticeable effect if we go on holiday for example and her diet changes. So I do believe for her, diet is critical. At one stage when things were at their worst it really hurt for her to go as very large lumps built up (sorry if TMI) so she did try and hold it in so I guess that was partly behavioural at that point.
I really feel for children who have medical issues if they are attributed to behaviour. But I also appreciate that for some children there is a behavioural issue or a fear of the toilet etc.

FiveGoMadInDorset Sun 25-Oct-15 20:10:05

Lots of fluids, dd ended up in hospital last year having an enema and high doses of movicol, once she was cleared out she hasn't looked back, we had been having issues for 5 years and she was so bunged up that she was being sick. She was on a combination of senatok and movicol which have been reduced slowly over the past year and now she is off them completely.

hugsarealwaysneededhere1 Sun 25-Oct-15 20:13:46

My son did have very slow transit and after X-rays we discovered how stretch his colon was.
The idea of the picolax is that it allows the bowel to be empty and so regain tone. All the time poo is stretching the colon, it can't regain tone. All movicol does is soften up what's there.
We found that a dose early afternoon allowed for a bowel movement after tea, perfect as then after a few days, no more soiling at school. This made a massive difference because he then developed more control.

My biggest advice is to not stress. It does get better although it's terrible at the time. Stop trying to control it, and don't obsess about diet. Do as much as you can to allow your child to self manage, they need to change and clean themselves at school. Get on top of good meds and remember things won't always be like this.

hugsarealwaysneededhere1 Sun 25-Oct-15 20:15:03

If you want links to our doctors pm me

Twooter Thu 29-Oct-15 14:52:48

It's expensive btw. I got it from the company directly, but you can get it from Amazon. Make sure you get the right one - it may be worth phoning the company first to discuss.

PippaFawcett Thu 29-Oct-15 16:01:54

Hi everyone, thanks for the posts. I have got another GP appointment for DD tomorrow so I will see what is said then. I am going to discuss Picolax (spl) with her to see what she says. DD has been having more than 10 sachets of movicol a day and she is still soiling, she still poos daily but never seems to clear herself out.

PippaFawcett Thu 05-Nov-15 10:44:48

I thought I would update this for anyone who is searching for similar experiences. I gave DD the picolax on Sunday and expected it to be explosive but nothing at all happened for 6 hours! She had her second dose and then an hour or so after that she did go to the toilet. I put a pull-up on her all day and she had a couple of marks it but nothing more than usual to be honest. I had read horror stories on the web about the poo exploding everywhere so I wanted to keep any mess to a minimum.

I only let her eat jelly all day - again, something that I found by searching online - she could have had consomme but I wasn't in a position to make any! She was allowed lemonade (massive treat for her) and plenty of water.

She went back to school on Monday and I sent her with a soft lunch - strawberries, tinned peach slices, raspberries and jelly again - and I asked the teacher to keep her water intake up. Unfortunately even though she has pooed everyday since, she has still soiled every day too so I am not seeing any improvement at all from taking the Picolax which is a shame as I had high hopes! She is back on the Movicol again to keep her regular and we will wait for our referral from the GP but I actually forgot to ask where we were being referred to! Oops.

The quest continues...

PippaFawcett Thu 05-Nov-15 10:45:54

I should have said that when the Picolax worked, she went 3-4 times on Sunday afternoon/evening and it was basically watery stools. She got to the toilet in time each time so it wasn't as bad as I thought!

soupmaker Fri 06-Nov-15 12:05:45

Hi Pippa. Hang in there. If your DD has a stretched and 'flabby' colon it will take a while to get 'fit' again. The main thing is getting her completely cleared out and then into a routine so she is clearing out her bowel. It took a long time - months - for my DD1 to get the sensation back in her bowel, so even though she pooing daily and cleared out she still had soiling incidents. She is still on the movicol and daily pico sulphate to keep her bowel moving.

PippaFawcett Fri 06-Nov-15 14:15:17

Thanks Soupmaker. It is so dispiriting as until this summer she had been fine for about a year and now it is is right back to where we were. Hopefully a referral will help.

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