Mother of 12 year old son who is soiling regularly

[Lmd12]

Hi there,we have been battling this for a year now,the first sign I knew there was a problem was when my son started to soil and then his bowel movements were so big he would block the toilet!!!he then told me he was only opening his bowels once a week.I think it has happened from starting secondary school and with them being so strict about going to the toilet.We went to the doctors who prescribed enemas which they should not have done,took advice and told to change to movicol,we have had several disempactions,altered doses of movicol and senna 10 mls added.we just do not seem to be getting anywhere.The school have not been very supportive,he asked to go to the toilet,got told no and bless his heart wet himself.He text me and told me what had happened,I went and picked him up,third time this has happened,another boy told him he smelt I was so upset to see him so upset.His form tutor called apologised and the teacher called me to apologise.i told her she has no idea of the damage she could do and she has no understanding of the impact this has on our family on a day to day basis,I don't think anybody does. She burst into tears and couldn't be more sorry.I said she needed to apologise to my son.I have to think about where we are going,who we go with,he can't sleep over no ones.

We are under a consultant who told me one day it will just stop.I understand that but I am so worried about him being bullied.it is not a good age for this to be happening .W e went through a stage of wetting because it is irritating his bladder.When he drinks more this stops it happening so much.I try not to get cross because I know it is not his fault but sometimes when you come into a room and can smell poo And he has no idea he is sitting In it and his brothers are moaning at him.I have had to make him wear paper pants in the evening because the soiling is so bad it's hard to wash the pants and the smell out.I am changing my job so I am there when he finishes school because if we are off work and keep saying to him to utilise the toilet it helps.

Sorry for ranting but sometimes I feel so upset and no one understands,they keep saying it's his diet and can't understand how he can not know he smells of poo and sit in it,I'm worn out trying to explain so we stay at home more now .I phoned school nurse for advice who tell me they do not deal with bowels unbelievable!! Every day he is at school I am worried but he has to have his education what I really want to do is have a month where I am at home with him but Unfortunately that is not an option.

My son gets cross with my husband and I for keep getting at him,we are not we are trying to help him but it is affecting our relationship with him I wish there was a quick fix but it is a time consuming situation.thanks for reading x

[Hidden]

When kids take Movicol they often cannot feel when they need to go and so it leaks out in their pants. They need to go sit on the toilet 20 mins after meals even if they do not feel they need to go and just 'drain'.

[Lmd12 in reply to Hidden]

Thanks we can narrow the time in the evenings when he will have bowels open and get him to sit on the toilet for half an hour.he only opens bowels every few days .thanks for reply

[Pixie2003]

Hi, my son is 9 and he has been living with soiling since he was 5. Firstly make sure you demand that he has a toilet pass at school, my son is allowed to go whenever he wants which is a great help, secondly make sure his school are aware of everything and they can put a Medicare plan in place (they should legally do this) so that all staff members can be aware.

I can't stress the importance of your son having full support at home and school. So make sure you all let him know that it's not his fault. My son has a mega colon which also means he has massive stools that sometimes amazes me how he does it. Don't let the consultant fob you off! You have to fight if you don't think it's right.

My son too doesn't know when he soils and it is vile but for his well being I just bulk but pants and bin the ones that can't be saved.

I'm happy to discuss the different treatments we've been through to give you an idea of the things you can discuss with consultant.

Hope this helps.

[Lmd12]

Thanks for reply.HE has a toilet card but is to embarrassed to use it in front of friends so I have told him if he gets to desperate and the teachers forget to just walk out and go .He has a bowel movement every few days and I can't believe the size of it!!he has had no X-ray done of his bowel but I read the NICE guidelines doctors follow for problems with bowels and they don't like to do this without trying everything else first,I would be intrested to see if his colon is big and stretched .i can't fault him for taking his meds regularly it's just the toilet ting to master,I work long shifts but I will be changing jobs soon which will help.

[SallyandPaul]

Hi there most things have already been said but wanted to give you my love and say how much I understand. The treatment from school you have received is appalling. They legally have a"duty of care for ALL medical conditions" don't let them fob you off. He should be allowed to go to the toilet whenever he needs to no questions asked. Watch a YouTube video by Sandra Hanson called Tacklng childhood constipation and soiling with macrogol laxative( movicol) the pooh nurses.uk. Make the school watch it too. I feel so angry for you both. I do hope you get some help and support soon. Good luck xx

[Lmd12 in reply to SallyandPaul]

Thankyou for your kind reply I will watch the you tube clip.hopefully school have learnt their lesson.the secretary escalated it to the headmaster as she was disgusted that it had happened .x

[Georgina1475 in reply to Lmd12]

I think Eric.org have a site where young people can talk to each other if that might help him too.

It must be hard for you all and it's such a difficult thing to cope with as a young person.

My son is 8 and is colon is damaged from years of constipation. He used to have very large toilet blocking poo's before the medicine became effective.

I truly hope school have learnt a lesson here. Incontinence is a disability and although I hate giving anyone a label it needs to be treated as such and adjustments made for him.

Regards and best wishes.

[Lmd12 in reply to Georgina1475]

Thankyou yes I think more people need to have a better understanding of why children soil themselves x

[ladyewandsew]

H

i there, I can really sympathise with you as i have experienced exactly the same difficulties with my son who is 11. He is in year 6 now so starting senior school in September. We have been having difficulties since he was 7. Soiling sometimes 3 times a day, not realising he has soiled himself, its really upsetting for all concerned. We have been under the continence clinic all this time but recently i persuaded the docter to let me see a cosultant. Having felt completely desperate like you i have been at my witts end. However under the guidance of the Consultant i reluctanly tried Pico Sulphate 10mls Friday saturday and Sunday night which clears him out completely, very loose! So he has to be careful to make sure he goes straight to the toilet in the morning and then maybe just before or just after lunch and then again in the evening. He then takes Movival, 1 sachet and 5ml of Senna, Tuesday to Thursday.

We have been doing this now for 5 weeks or so and I am feeling very optomistic. He has maybe 1 accident a week which is a huge improvement, hie stools no longer have a foul smell meaning things are moving along well. He has 2000ml of water a day, the school have been very helpful with this and give him a cup 3 times during the day, although i appreciate this may be more difficult in Senior school, something which worries me. He has a high fibre diet, in fact we has just been to see the dietician today. I have taken dairy out of his diet especially cheese which is not good for constipation.

Can he have a fast pass card at school so that he can leave class immediatly if he needs too? My daughter has one, she is year 11 and has a small bladder but thats another story! I really feel though that they will grow out of it, a friends son hit puberty and that was that! no more accidents. I also tried a course of reflexology for him with posative results and if nothing else felt like i was doing something proactive. Its also something you can lern to do yourself to help releive any blockages. Wishing you all the best and hope this may help in some way, meanwhile sending you an '' It will all be ok xx'' hug

[Lmd12 in reply to ladyewandsew]

That's fantastic news about your son.someone told me on here to watch the poo nurse video and I showed it to my son .it explains how movicol works and how to use it properly.my son is on 4 adult sachetsca day and 10 MLS of senna but is still leaking so I am going to add another sachet at night.i feel frustrated because we have to wait ages to see the consultant for advice I am going to be asked to see an incontinence nurse.thankyou for your lovely reply.going to secondary school make sure you go in and see the teachers start as you mean go go on make it clear your son needs to go to the toilet when he needs to. It's nice to meet others going through the same as us and who understand.big hugs xx

[Luella19 in reply to ladyewandsew]

Senna was our saviour too, really sorted my daughter out after years of movicol. Never really liked movicol.

[ladyewandsew]

Hi there, ys it's really good to speak to others going through the same thing. I will look up the poo nurse video too. If you can see the continence nurse then you probably be given the clinic number so that you ring for advice between appointments which is really helpful, I will start finding out who i need to spreak to when they go back to school on Monday. I think the worse thing in all of this the fear of other children at school noticing. My son takes a small drawstring wash bag with spare trousers, pants, wipes and a 'poo bag' to school, well wwe take it everywhere we go really! Take care xx

[Lmd12 in reply to ladyewandsew]

Thankyou yes my son has a bag at school to.the receptionist is really nice and looks out for my son at school so he trusts her enough to go to for help.its such a worry about our kids being bullied.

[Hidden]

Hello, Your post has really puled at my heart strings and I hate to say but Im having a bit of a blub.

My son is 11, and has been suffering exactly the same as yours since he was a baby, producing those huge toilet blocking poo"s that you mention and now continuely soiling himself.

He comes home from school stinking as, although he is allowed to go to the loo whenever, he feels embarrassed. He is very sporty, so when relaxed and having fun he soils.

There are bits of poo always over the floor, the side of his bed and in the bathroom. His pants are a constant nightmare and his family tell him how much he smells all the time, which he does because your always at your wits end. All you want to do is sit and cuddle on the sofa but you dont because of the smell, which is heart breaking, as he desperately want to also.

We tried Movicol, but he gags on it and refuses it. His diet is terrible, yes and if he ate fruit & vegetables it would help, of course, but like many children he wont eat them although his other 3 siblings love their food.

Today I have contacted a hypnotherapist, to see if we can tackle the issue in a different way. I believe the fear caused by the massive stools which caused such pain, led to the holding of them, so lets see if we can get things moving in another way.Fingers crossed!

[Lmd12]

Bless you I know you will try anything.i just found out that you can get movicol in liquid form,I am going to ask to try this because I think we are not getting anywhere with the movicol sachets ,he can't eat because he is to full up on fluid it looks like others get on with pico sulphate so am going to ask to try that as well.its just waiting for an appointment to come through!.we went away for the weekend so it has put my son out of sync.big hugs to you.xx

[Lmd12]

We are now having pico sulphate but not seeing any changes we are going to do another disempaction in school holidays on the adult sachets of movicol.to top it all off my son has got shingles.he must have a very low immune system bless him x

[Sammysun]

Hi there how is your son's bowels now a year later? My very sporting and active 11 year old is exactly the same. You basically wrote our life story. I am at my wits end. School camp is coming up and he won't possibly be able to go the way he is. Our school doesn't deal with this issue. Just curious to know how he is getting on now and if any treatment was received? I have taken jim to 3 different pediatricians and and array of doctors since the age if 4 and notjibf has helped.

Thanks you for your reply.

[Lmd12]

Hiya,if I compare now to a year ago it is better.we have good times and bad times.he was wetting quite a lot so was put on meds which made it worse.so we taken off that meds wetting is minimal.he is on lactulose 40 MLS a day and 20 MLS of dulcolase.my son thinks he can start reducing meds but we are still having soiling but it is nothing like before.he tells me he has bowels open everyday.he has hidden some pants .i wonder if anxiety is behind it all.we saw a surgeon for advice but because things are improved he has scheduled to see us in October and see if still maintaining so fingers crossed.he wants to go on a school trip to Iceland so we will see .it has been a long road but starting to see the light.bless you it is a difficult age for them to cope with this happening.we don't have issues at school no more so that's good x