Movicol

[Tillysmum16]

My 11 yr old has suffered with constipation for a long time. We are in the middle of movicol treatment (10 sachets today). He is going to the loo but not as often as I thought he would. Should we be giving the sachets within a time limit or space it out over the day and there was some brown staining on his bed covers like tea is this normal?

[triciaroo]

Hello :). I'm looking fir advice too so no expert, but our movicol disimpaction advice says that all daily doses should be given within a 12 hour window. We also had some very watery leakage (like tea) when disimpacting.

Hope this helps!

[Teddy500]

Hi, the advice is to ideally space them out, so we're on 12 sachets a day, 1 per hour between 8am and 8pm, however if that's not convienient, for example you want to go out, you can do a double dose so that the next one isn't needed for 2 hours. It is also okay to make them up in advance, so I sometimes line up 4 glasses in a row, set a timer to go off once a hour and my son goes and helps himself to a glass every time he hears the timer and resets it for an hour. My son will also wear pull ups (he's 9) if we want to leave the house which is good when it gets to the liquid stage, so far we've always made it home in time but they're nice to have on as he doesn't have to worry about accidents when we're out for a walk. He also sits for every wee at the moment as that helps the poo come out. If your son is impacted you will find that liquid poo passes around the hard, dry, blockage and you have leakage. You're aiming for 3 full days of completely liquid bowel movements (rusty water / tea), leave the toilet seat up as its often a mad dash to the toilet, before decreasing the dose to a maintenance dose, reduce the sachets until you have 1 soft bowel movement each day - type 4 or 5 on the Bristol Stool Chart, good luck 🦋

[mabelrose4 in reply to Teddy500]

Hi there ,

We are on day 33 of disimpaction on 12 sachets and my ten year old daughter has had enough ! We had runny tea on day 9 but it then went back to sludge and Poo soup for a week and then a few days ago she didn’t go for hours and then almost had a few days of proper small poos . She had watery Poo yesterday but back to small pieces today . She is very tired and lethargic and has dark eyes and I am worried that I am depleting her too much ?

She is drinking water at the same time ..

She was dry at night for about a week on week 3 but has been wet for the last four nights ? Really don’t know what to do now . We have an appt with gastronomía doc on July 21 st. Any advice as to how I should play the next ten days ??

We also did the sweet corn test ... she ate is at 2 pm on Sunday and it appeared at 9 am the following morning .

Thanks x

[Teddy500 in reply to mabelrose4]

Hi, can you get through to anyone on the ERIC helpline, sounds like you haven't disimpacted fully yet and if you dont then she's done all that hard work for no benefit, its really important to get the 3 days of rusty water / tea. But if she's not well with it then they may advise to stop. We're on day 50 and still not there so we can't give up now, but my son is coping well, eating, drinking, etc but he is now on Senna too on a night to try and speed it up. He has lots of liquid poo' s but there's also the gloopy stuff and normal ones too. I'm asked by his nurse each week how he is, if he has energy, eating, drinking and it's because he's fine that we continue. Sorry I cant be any more help 🦋

[mabelrose4 in reply to Teddy500]

Thanks so much for your reply . She has just had a little snooze and seems a bit perkier . She has also been to the loo again and done huge amounts of small poos which shot out quite quickly ... It s so incredible to think she could still be not through at day 33 , but sounds like you are ahead of us . I spoke to someone at Eric two weeks ago and she said she has someone on day 40 and to keep going , but I have just got a little concerned recently. I would hate to give up after all her hard work and efforts.

It was the fact that the sweet corn came through so fast that made me think she was done and that I was doing more damage . Also she has some other issues that we can’t get to the bottom of ..she has ibs symptoms but Eric lady said she is too young to have that.

Ok .. so maybe we should plod on at least until we see the specialist in ten days .

Thanks so much

[Teddy500 in reply to mabelrose4]

Hi, I would if you can, we've considered IBS too, but after a lot of research into symptoms and when the tummy ache would occur, we concluded it was constipation and trapped wind and certain foods (I think). He takes Bioglan Happy Tummies which may be worth a try? New poo can go past the old stuff which can explain the sweet corn. The Senna helps to contract the bladder (but can cause tummy ache) to shift it along while the Movicol softens it to make it pass more easily. We cut out bananas and milk too. Have you watched the poo nurses video? I haven't got a link but it should be there if you Google, helps to reassure that you're doing the right thing 🦋

[mabelrose4 in reply to Teddy500]

Yes I’ve watched that ... I just thought we would be through by now ! I also wondered how you can get to rusty water despite eating every day ?

Yes it’s strange re the IBS as I’m not totally convinced and would love that not to be the issue .

We tried the senna but she had twisty knife stabbing pains and got very sweaty ... after even a third of a tablet so I stopped that .

I will check out the bioglan as I have also been wondering about probiotics .. is that what it is ?

She gets terrible trapped wind every night and has to go through thirty mins of stretches and a host of trumps to get any relief .

She has had a run of six dry nights during the disimpaction but has been wet since she had horrendous tummy ache on Sunday evening . She had lamb which is the first time that she has had dense meat for a few months so we put it down to that , but it could be a complete coincidence .

Last October she was taken off all food except potato and then we had to slowly build in different food groups .

She seemed to have issues with cruciferous veg , onion garlic and red meat except pork mince . Also dried fruit seems to cause issues . We managed to get her tummy ache free after six months but she was doing colossal poos and wet every night hence me deciding to embark on the disimpaction .... but not under any guidance other than Eric .

Anyway , she seems much perkier so it could be end of term tired ness so we will continue.

How old is your son ?

Thanks so much for your advice

[Teddy500 in reply to mabelrose4]

He's 10 on Monday, never been dry at night, starting wetting during the day at 6.5, only just now doing a first disimpaction at 9, have had many years of no help and being told that 'he'll grow out of it'. Its only now that constipation has been highlighted to us as a possible culprit for not only his tummy troubles but also the wetting. Lots of tummy ache and trapped wind since he was born. Have tried in vain to sort out which foods cause the most problems. Yes Bioglan Happy Tummies is a probiotic, easy and tasty. A trampoline has helped too. During this disimpaction I have seen the rusty water, it's like the colour of tea, we just haven't had it consistently for 3 days, but he's out of school at the moment so it's convenient, not sure what we'd do if he had to be at school and I couldn't work from home! We have the liquid Senna and he has 2.5ml which is 3.75mg, he had mild tummy pain from the first two doses and then it subsided, which it suggests it should on the bottle, not sure what the tablet works out as but with liquid you could go as low as 1ml. Is there a Bowel and Bladder clinic near you? We are with the one at York. Glad she's feeling a bit better, it's so hard seeing them suffer, especially when friends eat burgers, chips, fizzy pop and are fine! Good luck with it all 🦋

[mabelrose4 in reply to Teddy500]

So they are in the same school year ! Like you I didn’t realise the correlation between wetting and constipation and was told she would grow out of hot , it was only when she was in so much pain last Oct that things came to light .

I’m in London and we are off to see Prof Mike Thomson at The Portland on July 21 St so It will be interesting to see what he says . I will let you know , given our situations are very similar .

My Doctor prescribed the tablet senna but the liquid sounds much better .

We have also seen rusty tea twice but never consecutively.This morning she has done lots of fully formed little soft poos and says she feels so much better as last night she said she could feel it but it wouldn’t come out ...so we are clearly not there ... after weeks of liquid Poo they now look almost normal yet she’s on 12 sachets a day . X

I hope he haz a lovely birthday

[Teddy500 in reply to mabelrose4]

Thanks and yes please do let me know how you get on, we're waiting on an appointment too but nothing expected before August, I'm desperate for answers and a solution before secondary school. 12 sachets and regular type 4 poo' s, I did ask his nurse and she said if the old dry stuff mixes with the new liquid stuff then you can get regular looking ones coming out! Hope you get sorted on the 21st 🦋

[mabelrose4 in reply to Teddy500]

Hi Teddy ,

So today my daughter was x rayed and no blockage / Poo ... apart from a little( normal amount ) was found . We were still on 12 movicol so the doctor has taken her off that and replaced it with liquid parafin .

He has also prescribed her tablets incase she has picked up a parasite at some point in the last few years ? Apparently it is quite common and if it remains untreated it can cause a lot of gas and abdominal pain . Bizarrely last week a friend of mine told me that her son , also aged 10 is being treated for that . My daughter has been dry for a twelve night run since disimpaction apart from one night ( although we still never reached rusty tea for three days after day 42 of 12 sachets). He did also suggest demesoprin ( not sure how you spell it ) ... which will solve the wet night issue .. but I just want to see how we go without it for now . We have a follow up in 6 weeks .

How is your disimpaction going .... ??

X

[Teddy500 in reply to mabelrose4]

Hi, nice to hear from you, it's good she was clear on the x-ray, we reduced the Movicol after 60days, didn't get 3 days of rusty water but had quite a bit of it, his nurse said that it could be because he's on such a healthy high fibre diet and eating so well whilst on the Movicol, I think they would have told me to stop a little earlier but something happened and they didn't call me for a couple of weeks, he's on 6 sachets at the moment, the advice was to reduce until he has one soft poo a day, he's doing two a day at the moment but I'm not rushing the reduction in the dose as I don't want to let him get backed up again. I've not heard of liquid paraffin before or the parasite so I'll look into them - thanks! It's great that she seems to be able to stay dry overnight by herself 😁, I don't like medication, his pull ups weigh about 215g on a morning which is equivalent to 215ml so I know his bladder doesn't have the capacity to hold enough for overnight yet, when we measure his wees it's usually 150ml to 175ml but it's an improvement from before the disimpaction and hoping it will continue, not a lot of improvement on the dribbles and leaking during the day when he gets the urge to go and before he makes it to the loo though. If I can get his bladder capacity up to 215ml and he doesnt then stay dry overnight then the Desmopressin has been suggested by the nurse. Also Solifenacin for daytime as Oxybutynin didn't help much and he had side effects. I'm in no rush to start any medication until I know that his bowel is running smoothly and I know exactly what he's capable of without any medication first. He now stays on the loo for 5 mins and to help him fully empty his bladder and bowels his nurse said to 'blow' so we made some pinwheels to spin around so its not so boring, tried it myself and the blowing uses the same muscles as those for emptying, wierd but true. Hope you continue to make progress, thanks for getting in touch x

[mabelrose4 in reply to Teddy500]

Hi Teddy ,

Thank you for your update too. I think all the children are different but it is interesting that neither of us got to the rusty tea . The liquid Parrafin has been around for years and is cheap as chips from the chemist. He has suggested 5-20 ml twice a day and that we need to manage it until she gets one soft bowel movement each day . I am starting on high doses ( 17 ml) just given It to her now , and will do the same tonight as , like you , I would prefer to keep her clear and then slowly build up to a firm Poo. There is definitely a correlation for us between the packed bowel pressing on the bladder which makes her wee in the night . When the bowel is empty she even wakes up around 4 am and goes herself .

Regarding the parasite it is fascinating . He said that she could have picked it up on holiday years ago and that they never go unless treated . Apparently it is very hard to diagnose through stool sample so his theory is treat for it anyway to take that option out of the scenario . He prescribed Tinidazole 500 mg and she has 4 tablets each day for three days ... and that’s that .

Re the desmopressin... like you I prefer not to medicate so I will hold off , but I have read on here that they try it for three months . I have read that it is a hormone treatment to balance your water and sodium . Apparently you can sometimes kick start your body into re providing the hormone itself ? So maybe it is worth trying down the line .

Have a look at Www.westchesterhealth.com and search 10 signs you have a parasite .

No 1 is

Unexplained constipation, diarrhoea , gas, bloating, nausea or other symptoms of IBS ... which couldn’t describe my daughter more .

It could come to nothing ... or that could have added to an already propensity for constipation .

Time will tell ..

I’ll keep you informed on everything.

Take Care x

[Teddy500 in reply to mabelrose4]

Brilliant, thank you I'll have a look, take care too x