Hi , im new here just signed up yesterday , ive been reading some of your posts and im so humbled by your experiences my heart goes out to you all as ive seen some of you have been suffering with issues for in some cases many years . My sons troubles began with a bout of constipation a year ago , then severe impaction which made him so sick , cleared with disimpaction dose of movicol & up til now been trying to wean down movicol from 2 sachets a day which feels impossible . He is sensitive to all grains mainly wheat , allergic to all nuts & dairy . he eats a diet of mostly wheat free bread & pasta & cereals , meat fish and vegetables , fruit & oat milk . He will go through phases of using the toilet & soiling himself . usually as soon as i risk dropping the movicol dose even by as little as 5 ml (out of the 62 ml 1x sachet before dilution into his juice ) it upsets him so much & he really cant help it, i always encourage him to just let it go because he can build up so much pain its unbearable for him , at times i can spend 3 hours during the night massaging his tummy if he has held on as he gets so blocked that even the gas cant escape . he will hold for 2 days sometimes . I am curious as i read that so many people are having the same problems with the movicol & children being unable to sense the urge to 'go' . my son feels the pressure build up then it turns to fear and he sometimes paces around jiggling his legs hugging me and telling me he loves me . he gets so scared poor thing . I read that some of you have had some sucess by using senokot , is that something i should ask my doctor for ? any advice would be so greatfully received thanks
4 year old boy with regular soiling 1 yr on movicol a... - ERIC
Hi there and welcome. My daughter had success with senokot which was prescribed by a consultant after about 2 years of just using movicol (half to whole sachet per day) he added 5ml of senokot which stimulates the bowel to push op out. She was on this along side movicol for about 9 months. It helped a lot. She doesn’t take anything now except the odd spoon of senokot or lactulose if she hasn’t pooed for over 2 days (every 2 days is the norm) she does still soul on occasion but not much poo, just a large smear in knickers and this is due to her refusing to use the school toilets at all at school now, not even to wee.
School are very aware, on board and understanding but by year 3 I have stopped worrying so much as in time I hope she will become more and more aware of herself.
Sorrr I’ve gone off subject! My daughter is so much better now than at 4 years old when soiling / withholding consumed my life totally with worry and stress. Age I found helps a lot. Hot baths, tummy massage as you are doing, hot water bottles. Have you still got a potty? Would he find it easier to poo in a potty still? I used to keep ours in my daughter’s bedroom which was a bit unhygienic but she would poo whilst fiddling with books in her book shelf. I didn’t care that it wasnt in bathroom as she was going.
You could try asking g for senokot, not sure if there is a minimum age, my daughter was 5 when prescribed it.
You are not alone, so many people go through this with their children x
thank you so much for your reply luella19 im so sorry its taken me this long to respond when you have been so kind to share your persional experience, ive only just managed to get time to sit at the laptop. i know what you mean when you say it consumes your life because that is exactly what it does . yes we still have the potty and he uses it a lot and like you i try all the tricks in the book to try and get him to go , regardless of where in the house. thank you again for sharing your experience . im going to ask for the sennakot at some stage. as the lady below said about the maintenance dose , i decided to take him back up to 2 sachets a day and he has stopped soiling again ... but lowering it very slowly doesnt work either so i think the sennakot is the next best idea for us to try . ill let you know how it goes . Im so glad that things improved for your daughter and having good support at school too its good to hear your worries were lessened a bit . i hope things continue in a positive direction for you both thanks again xx
A lot of good advice from luella. All I can add is my empathy and to say don't worry about reducing the movicol, it won't hurt him. Maybe the maintenance dose is not high enough, the senokot might certainly help too. If you haven't already seen it there is a really good YouTube video by a nurse called Sandra Henson. It's called tackling childhood constipation with macrogol (movicol) . Good luck and let us all know how you get on. X
My daughter had mild nerve damage- she genuinely didn't feel the urge. We kept her on a very high dose for ages, we are down to one and a half a day now. Her poo is mousse-like but she can control it.
Have you read "The ins and outs of poop" or "Stool witholding, what to do when your child won't poo?" (both on kindle, I think also both exist as paper backs).
The not knowing isn't a problem with Movicol, it's usually due to a stretched gut or nerve damage. Basically they don't recommend reducing the dose until the damage has worn off (its almost always temporary). But until then you could try a senna based medication - it will make him 'push' but won't address any fears or make the feelings come back. But it could make it a less messy/unpredictable process.
thanks for your reply squizita sorry for the delay ive only just managed to grab some time on the lap top. yes i think thats what happened with my son , i think the docs insisted on weaning off too soon and things just went back to how they were after he got impacted & he would just feel the pressure building up and then not have the urge or know what to do with it. sometimes it would just fly out under so much pressure and frighten the life out of him ... and me!! i feel there should be more specialist advice available at the doctors surgery because i dont think they are aware of the complex way it all works . His poop is very mousse like again now since i put him back up to 2 sachets a day and so far so good with not witholding / soiling . which is great but just leaves you with the fear that we will face the same again when we try to wean off. im going to keep him on 2 a day now for a few weeks and then speak to my doctor about using sennakot as a combination short term to help with the weaning off process. thank you for the link to the book i will have a look into that as soon as i can too . thanks again ill post back at some stage after xmas to let you all know how its going. xx
ended up back at the doctors anyway as the tummy pain my little guy was in has been horrendous so ive now got a huge bottle of senakot to try along side the movicol . not sure how its going to go as the doc as per usual didnt really give me a proper explanation ... but i will report back after xmas / in the new year sometime hopefully with positive results . fingers crossed.....
How is he getting on? Do you find his eczema gets worse with the movicol?
Hi HollyGriffo i havent found any difference in his skin issues while using the movicol , hes been on it for 16 months now. Just to update this thread since i wrote my first post i had some superb advice from the eric support team which helped me to see where i was going wrong, first of all i put him back up to 2 sachets of movicol per day , the sennakot wasnt really doing anything and i think that was because he had no idea of a real 'urge' to go because his bowel was so stretched. we have stayed on the 2 sachets and its only in the last 2 weeks that real improvements have been noticed , hes just happened to start getting an urge to 'go' , also i had noticed a huge reduction in the leaky poo . theres no more soiling now apart from the rare occasional leaky bit still but its barely anything now . we are going to stay on the 2 sachets a while longer as im scared to taper it down yet in case we back track and with starting school full time in sept im terrified for him if he starts to soil again ... so its all ok so far , one of the main culprits for making it harder for him to go is Wheat , so we avoid that at all costs . im not sure when we will start to wean the movicol but ive been advised that the length of time he had constipation / soiling issues should be multiplied by 2 to give you the length of time to stay on the movicol , hope this helps some of you that are going through this issue at the moment . again the advice and help found here has been the biggest blessing we have found
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