Movicol & soiling

[Msarg666]

Hi everyone, my son is 4 and starting school in September 😫 He has suffered from withholding and chronic constipation since he was about 2.5 and thanks to lack of information from the doctors I have only recently found out for myself how to get him on the road to recovery. He is on movicol. (2 sachets per day) and I am just about managing to get him to do a daily poo on the loo (after about a month of using movicol properly), although he screams and doesn’t want to sit on the toilet 😥 The problem I have is that he is soiling throughout the day and I feel like I need to solve this before he starts school in September. He is still in pull up pants and I feel that I just can’t start him at school in these... he wees on the toilet fine.

Has anyone been in this situation and can give me some advice? Is the movicol causing the soiling? I am dreading him coping without me at school and I just don’t think they will be able to cope with the situation. He has never been a big drinker so I think more fluids might help him. Any help very much appreciated, I am at my wits end. Thank you.

[Alicass]

Disimpaction with Movicol might help. My son started school having accidents. Year R was awful for us but the school were very supportive. I can empathise with how you are feeling.

We're 5 years down the line He's only been on Movicol for 6 months or so and we've seen a great improvement. We're disimpacting him every holiday and have a toilet plan in place. Try getting your son to blow bubbles, balloons or play on the tablet. We have a foot stool for my son so his legs are at an angle - that way the muscles do their job instead of clinging onto the toilet seat.

My son's Paediatrician kept him on Senekot for 2.5 years. It was pointless and should be used to keep the bowel clear not to disimpact.

Have you spoken to the school about it? If you speak to them it may ease your worries. Get the school nurses involved too. Do you have a local Paediatric Continence Nurse you could talk to?

[Msarg666 in reply to Alicass]

I think he is disimpacted already as he does a sizeable poo everyday. Wondering if I have the dose too high which makes him soil, although have found 1 sachet not enough.

I am mentioning to the school that he has a medical condition and will be meeting with his teacher soon but am not expecting them to understand. Just so worried he will spend his time uncomfortable and the other children noticing his soiling.

Thanks so much for your tips Alicias, I definitely need to get a taller foot stall, although he does generally kick it away in frustration.

[Misty10 in reply to Msarg666]

Drop half a sachet or even two spoons a day see if this helps him.have u got a school senco also a school nurse.

[Msarg666 in reply to Misty10]

I think there is a school nurse but she isn’t there very often.

[Misty10 in reply to Msarg666]

ours covers around 15 other schools but will come to meetings etc .

[rvc123]

Hi, my wee girl is going into her 2nd year in school in September. We were on one sachet of movicol for about 18 months and it seemed to be doing the job until earlier this year when she started to stain. My heart was constantly in my mouth due to the worry of an accident in school.

I got her to a specialist about 6 weeks ago, he upped her to 2 sachets and told me if it got too soft to come back to 1 sachet and to give her picosulphate. This has helped immensely-she has started to feel the urge to go herself, sometimes.

However she did have an accident in school a few weeks ago. The only thing that made this bearable was the fact that I had kept her teacher in the loop, she phoned me immediately and I just happened to be outside waiting to pick her up (I was early)

I can’t tell you if the 2 sachets is too much-it could be leakage round a blockage that you’re getting, so would advise seeing a specialist to confirm,I don’t ask the gp about it anymore as they don’t know enough about it. But I would strongly recommend you keep your teacher fully informed. I told ours the very first day of term and it wasn’t an issue until much later. When it started being an issue again I told her about it and had her onside to support my daughter. (Since the accident she has told me not to worry, that if I hadn’t been outside she wouldn’t have hesitated to go clean my wee girl up and give her a hug, which again, helped me)

You may(should) find that they are very supportive and will want to do what they can to support your son, whether that’s reminding him to go, getting additional stool/seat for him (although for the wee ones it’s probably a child size toilet), or sensing that he may have soiled and guiding him to the bathroom before his peers pick up on it. Honestly, I couldn’t have done the last few weeks without the support of her teacher x

[Msarg666 in reply to rvc123]

Thank you rvc223. I will definitely keep the teacher in the loop and just pray that she is understanding. If I could stop the constant soiling I would feel so much more relaxed about the start of school but perhaps it’s just a side effect of movicol and until they get that sensation back we may have to live with it.

[rvc123 in reply to Msarg666]

I don’t think my daughter was getting the sensation at all until the consultant put her on pico sulphate as well as the movicol, she gets 5 ml at bedtime and most mornings she goes to the toilet. Some days I prompt her, others she says she feels it. Those are the best days. If you haven’t been referred, ask your gp about an encopresis clinic (that’s what the English gp called it) or bowel management clinic. I paid for the first appt as our waiting time was 4-6 months, but then he put us onto his nhs list, we go back in 4 weeks, but I’ve also phoned his secretary to ask for advise, she has passed message on to him and relayed his answer to me. But definately, the staff have a duty of care to your child and they need to know everything in order to meet that duty x

[Msarg666 in reply to rvc123]

I haven’t heard of pico sulphate but I will look that up, thank you 🙏🏻 The chances of me seeing a consultant are quite slim as i can barely see a doctor at our local centre but I will certainly try.

[rvc123 in reply to Msarg666]

The brand name is dulcolax, it agitates the bowel to make it go, from my understanding, but seeing as my wee girl hasn’t felt the need to go in over two years I’m attributing the fact that now she does to the dulcolax as she’s only started taking it a month ago. It’s awful; you have to fight for everything 🙄

[Misty10]

Hi yes we're in the same situation. In the summer I'm going to be putting my lg in knickers with a liner in as she constantly smears poo as she has no feeling and suffers with holding. Chronic contispation to.she starts school September too.

[Msarg666 in reply to Misty10]

So sorry to hear that you’re in the same boat. Is she on movicol?

[Misty10 in reply to Msarg666]

Hi sorry for late reply she on everything going movlcoil senna lactose pic .senna and movlcoil until she 10.to get her bowel back to normal size .

[CN4321]

We have had endless troubles which are still not fully sorted but things changed for us when we were prescribed senna. The consultant then told us that if the poo was hard then to increase the movicol and if it was too soft to reduce it but if he was soiling to increase the senna as that helps him to push all the poo out.

[Msarg666 in reply to CN4321]

Senna might be something I need to look into. Is that senokot?

[CN4321 in reply to Msarg666]

Yes its called senokot syrup

[Evala]

You sound almost identical to us 3 years ago. In our experience movicol is a necessary evil. I think it is very hard to be continent on it, yet if you have a withholding child it is important their bowels are emptied and not stretched. If your son has been suffering withholding a while, soiling may also be due to a stretched bowel and not getting the right signals to go or being able to hold on. For us, my son started school in pull ups, progressed to pant liners, had several movicol clear outs in school holidays to be sure no back up, then extremely slow reduction of dose while I think his bowel was recovering. Plus, clinical psychologist at end of year 1, for 7 lovely play sessions that helped with the withholding behaviour that we could not consistently budge. It is not a quick fix, so speak to school. Discuss what they can do, emphasise this is not just about a bit of toilet training. Don’t worry about the other kids yet, they are too young to notice or care! Wishing you lots of luck and patience x

[Msarg666 in reply to Evala]

Thank you Evala, I really hope the other kids won’t be aware if it. How did you get on starting off school in pull ups? I worry the other kids will tease him. It feels like an endless battle at the moment but it’s great to hear from someone who has come out the other side.

[Evala in reply to Msarg666]

Hi,honestly we had no problem with other kids. Teachers were right, they are oblivious at that age, plus kids without toilet problems will still have the odd accident so they are all used to it. One thing not to worry about x

[Liddybob in reply to Evala]

Hi, what kind of things did they do at the play sessions?

[Evala in reply to Liddybob]

They made up a story with him to give another reason to poo on the toilet and to blame something else for accidents (for him, sounds random, it related to the basilisk from Harry potter, he did a fab drawing)!. They drew with him a circle diagram, the poo choices cycle, to show how ignoring/accidents ended up feeling bad, so better to deal with accidents/try not to soil and trying to work out what he felt in his tummy/bottom and what it made him feel like. They used that at sessions for him to talk about how things had gone that week. They made reward charts and I think it helped having someone else for him to show his achievements to and decide on rewards (believe me I thought I was through with reward charts!!) As an adult i learned that it was ok that we had to keep changing the level of incentives/rewards over the years, sometimes they worked, sometimes they didn't depending on how hard he was finding things. As with all psychological problems sometimes not a lot of incentive is needed and sometimes lots is. We also learned that kids have a developmental leap age 6/7 ish for self awareness and awareness of others which I think has helped my son in the last year.. he doesn't want other kids to know he has soiled, so this itself becomes an incentive. Psychologist did also go through in one session a video of poo/bowel/why we need to go, I think she had his attention more than i ever do! I learned not to expect a quick fix, but that we could return to charts/stories/poo choices cycle as tools. A year on we still talk about the choices cycle and are doing fantastically well, but incentives still required. She also suggested we were tougher in him not receiving rewards like joining in his sports, unless he did well. That's a tricky one as felt like punishment, but she said no, not if he has to earn things rather than have them taken away. Honestly i think a lot of this could be delivered by school nurse/constipation nurse/special needs teachers/interested school staff but I guess that it is not in their remit and there isn't funding. But I'm sure it helped us.

[70Mysore in reply to Evala]

Really interested to hear about your experience with a clinical psychologist. My 6yo witholds and we are struggling to know how to break the pattern and change the behaviour. How did you find the clinical pyschologist or were you referred?

[Evala in reply to 70Mysore]

I was very fortunate to have useful friends who are psycologists. They put me on to Oxford nhs 'children's psychological services'. This is not Cahms, but I think a service aimed at supporting children with medical conditions. I'm told in most parts of the country their remit is limited to specific illnesses but in Oxford a year ago they accepted my son. Once I knew about them i emailed them and they said they could help if I got the gp to refer us, preferably to paedeatricin first, which is what we did to tick off missing anything physical. Then the paedeatricin was happy to refer us on. I wouldn't have known about this service or felt bold enough to ask for referral if I wasn't lucky enough to have talked to friends in the business! I think what was provided could have been provided in the same amount of time we spent going to constipation nurses in the early days of the problem but that wasn't their approach. I never got any support for the idea that a psychologist could help but trusted my instincts, even the paedeatricin said that most of the time a parents instinct is correct. If there are no nhs services in your area you may still find paying is worth it if you can manage it. But ask around to make sure you find someone with the right approach. We saw a trainee which might be why we got an appointment, but she knew enough and I had a great chat with her supervisor at the end so two heads in the end. X

[70Mysore in reply to Evala]

Thank you - that is such a helpful reply and by luck, we also live in the Oxford area, so I will look into this service. Half the challenge is not knowing what exists or what to ask for, which makes this forum very helpful. Thank you so much. x

[Lubo2009]

It took my LO quite a while to regain the sensation that he needed to go. Dr advised that the muscles round the anus will have stretched with the constipation. After time of movicol, lots to drink each day and enduring he was eating as much fruit and veg as poss he now is only soiling about once every 2 months. We also have a toilet plan in place - regular toilet visits / raised feet etc.

The school have been great - I meet with his teacher at the beginning of the year so that they are aware of the plan. All staff have supported it.

Good luck xx

[DPLT]

We were in this same position this time last year, soiling and with holding. We have had an awful year, school have been amazing but take it from someone who has been there get yourself to a specialist. If your child is soiling and isn't aware of it it's probably overflow. Our specialist told us even of your child is opening their bowels everyday doesn't mean they aren't constipated. My son has had 2 admissions to hospital in the last month, one hospital said he wasn't constipated another has carried out a manual disimpactation and 6 days of kleen prep. The difference is unbelievable! I wish I'd pushed it years ago! Good luck

[Barbiecar in reply to DPLT]

Hi my daughter poos liquid every day and soils. I can only imagine that this is overflow, because when I reduce the meds the soiling gets worse and she never feels it coming; she’s on Pico Sulphate. You mentioned manual disimpaction; and Kleen prep. Can you tell me what that entails??

[DPLT in reply to Barbiecar]

Sounds like overflow. My son had no sensation at all, poo was pretty much constantly running out of him, They admitted him and out him under general anaesthetic , and basically manually cleaned him out, while he was under they fitted an ng tube and the kleen prep pretty much flushed his system out. I can't tell you the difference in him. People are also commenting on how much happier his seems. It's been a very long 5 years and we seemed to exhaust all other options.

[Josiephoebe16]

Hi my 5 year old son was born with an anorectal malformation. He had a stoma for the 1st year of his life while they done reconstruction on his rectum. He has been chronically constipated ever since. He has never managed to pass a stool on the toilet. He constantly soils. We have tried movicol fybogel, laxido, picolax, senna and enemas. I'm at my wits end he has had 5 manual evactions done under general anaesthetic in the last 2 years. The dr suggested we try rectal irrigation on a daily basis which basically entails pumping water into the rectum in the hope it will flush out the poo. My son just went tolerate this anymore. Hes traumatised with being held down to be given enemas and rectal examinations. Any advice would be greatly received. I'm so isolated as I don't know anyone else with this condition. Thanks.

[Misty10 in reply to Josiephoebe16]

Hi on Facebook there is groups for children with stoma .also constipation groups I've join them .your not alone hun.