Paula Report post Posted February 13, 2006 God i could bloomeing scream. My son is soiling all his underpants and has seveare anal leakage. Ive tried forceing him to sit on the loo but he just screams and yells.Its obvious hes got constripated againe and now liquid is seaping past.The whole house stinks.And his NT sister is complaining. Does he care does he hell. He sitting stinking,shuffling round obviously in discomfort but getting all angry when i suggest the loo is needed. Bloomeing great start to the school holidays.Roll on tommorrow.Thats if i aint gassed by the smell and keel over. Dont yer just love the AS kids. Humour its the only thing that gets me through.I hope no one visits well blame the draines. Quote Share this post Link to post Share on other sites
Paula Report post Posted February 13, 2006 Im no longer smileing i could weep. Ive just had to bin all his clothes that he was wearing.Then shower him of. God how long does this go on for.Ive been wipeing his bottom,cleaning him up for bloomeing 12 years 12 years.Theres no end to it.Hes actually developing haires now on his u know what.So i guess my fear as arrived.Im wipeing the backside and showering a pubebesant boy. Im realy fed up of it. yea i know theres worse things out there and in some ways im lucky.But it doesnt feel like it. Please please anyone anyone can you give me hope that they do become self sufficiant that this behaviour passes.Because it seems like theres no end to it. Quote Share this post Link to post Share on other sites
adamsmum Report post Posted February 13, 2006 <'> <'> It will end one day. I know of a lad of 14 he's not long got thru this. Sorry i haven't got eny advice mine are still small. I suppose iv got it all to come Quote Share this post Link to post Share on other sites
justamom Report post Posted February 13, 2006 Hi paula, Its difficult I know my 12 AS son has Ulcerative Colitis (inflammatory Bowel disease) and I have days similar to you where he has accidents and I have to shower and clean up after him. He tries to hide his soiled undies so you can imagine walking into his room and not knowing where the bleeding smell is coming from. I also hope things become better and that they get more self sufficient - only time will tell. Hope its nothing to serious his leaking you know what??? I think you mentioned before in a thread that he has had this for a while.??? Hopefully he has not got a blockage, sounds strange you can still leak from a blockage. I too am having a good start to the hols, went to emergency drs yesterday morning because K had a throat infection and was finding it hard to swollen on penicillin now but still poorly. hope things get better justamom Quote Share this post Link to post Share on other sites
on the edge Report post Posted February 13, 2006 I had this problem for a little bit- but my son was only 3 and then I put him on the GFCF diet . I haven't been on this forum long so do not know your histories etc, I can only assume you have tried or are on the GFCF diet with your son.. It has soooooo sorted all my sons gastral problems out (touch wood)- that and the pro-biotic enzymes. Quote Share this post Link to post Share on other sites
Paula Report post Posted February 13, 2006 my son has had bowel problems for a while all his life.Gps and pead never helped us.Then he developed a phobia of toilet paper.Againe no ###### took it seriously no matter how mant times i told them.Hence he wont wipe his own bottom. Combine this with constipation and anal leakage plus bouts of diareaha and a refusel to use the loo when needed and its hell. Altering his diet has made it easier for him to pass stools i guess but he refuses to sit there at times.Then he wont wipe his bum and hes all messed up. I know this is a familiar thing from reading other peoples problems surrounding the loo. Today has been a nightmare.All underpants wrecked trousers full of sh*t to be blunt and him screaming. Welcome to my world.(in the voice of jim reeves)nose peg on nose to come on in !!!!!!!!! I guess i can still smile through the tears. hes just screamed his head of coz he wanta pizza.Ive tried explaineing pizza makes bowels worse.But hes yelled screamed and got in my face.Today i gave in. Tommorrow surely cant be as bad.First day of the holls always goes with a bang and this time it came via the bottom. I make a joke to get me through it else id cumple up and scream the ###### place down. God help me hubby hes due home soon hell get it coz the sh*t will be literally hitting the fan. Quote Share this post Link to post Share on other sites
Zemanski Report post Posted February 13, 2006 I can only offer these <'> <'> <'> I can't begin to imagine how awful this is Zemanski Quote Share this post Link to post Share on other sites
LizC Report post Posted February 13, 2006 Hi I hear you!! My son who is 5 1/2 is still soiling his underpants,. I have had enough! he always stinks and it is as if he can't be bothered to go to the loo, that or he can't tell when he needs to go until too late and just has no full control! he wasn't potty trained till almost 3 but the poo side of things is ongoing! and he is no where ready to be dry on a night and often in the morning has poo in his Pyjama pants too not fun is it?! Liz Quote Share this post Link to post Share on other sites
Suze Report post Posted February 13, 2006 This sounds terrible and you really have <'> <'> , all my sympathy.I am probably stating the obvious but have you seen a pead, have you tried suppositries, lactulose, will he use wet wipes or clean himself with a wet flannel? Could you threaten him with incontinence pads.............I,m sorry I,m just making wild suggestions I just wish I could offer you a solution <'> . Quote Share this post Link to post Share on other sites
hev Report post Posted February 13, 2006 hello paula,sorry you having such a rough time,ive no advice on toilet troubles but just to let you know i am thinking of you,i also wait for hubby to get in then i take all my frustrations out on him,poor man,he must love me cos i wouldnt stick around here,it must be like walking into a war zone Quote Share this post Link to post Share on other sites
Paula Report post Posted February 13, 2006 Yes ive used suppositries and we use wet wipes and yep done the pead.All to no avail.he wont touch his anus at all. Basically no one took anything i said seriously ever when i fist realised this was going to be a serious problem and gradually the years passed by and now i cant break it.Yep ive tried thinking sod yer sit stink be a mess.he dont give a toss.Doesnt appear to bother him.Though he will try and hide at times his underpants. To all mums and kids haveing this problem it sounds funny it aint.And i guess im lucky at least hes not in nappies. Quote Share this post Link to post Share on other sites
Paula Report post Posted February 13, 2006 oh and once we had a clinical physcologist try to hypnotise him in an attempt to rid him of his toilet paper phobia.That had to be seen to be beleived.Its a whole other story. Granted my son wasnt hypnotised and i couldnt keep a straight face. Quote Share this post Link to post Share on other sites
Suze Report post Posted February 13, 2006 Hi paula have You tried posting this problem on an adult ASD site.Just thinking that adults maybe able to offer some advice on how to get round the toilet paper phobia, and going to the loo etc.Aspies for freedom was a good adult site, with the majority having ASD.There might be something on resources, . Quote Share this post Link to post Share on other sites
lotty Report post Posted February 13, 2006 sounds like a phobia? Quote Share this post Link to post Share on other sites
Debs Report post Posted February 13, 2006 I can only offer some practical advice based on the inability to use toilet paper - have you thought about aclosomat toilet? If a child has a physical inability to wipe themselves (due to physical disability, learning disability etc) I have known parents have a closomat toilet installed - it cleans with a jet of water and dries with warm air. If you refer your son or ask your GP/Paediatrician to refer your son to the Occupational Therapists at Social Services then they can assess for this and provide if they feel it will meet his need. Quote Share this post Link to post Share on other sites
treetree Report post Posted February 13, 2006 my daughter is 5 have same prob with her i can remember once she had tried to wipe her own bum we had it on the floor on the bath in the bath my freind nearly stood in it and to top it all we couldnt find her knickers ,we search high and low never did find them she has a tear in her bum and is on lactolose movicol sodium pico sulphate and we still have leakages she poohed her self yest at her nans ,its suprising howmany kids with as have thease prob s <'> <'> <'> <'> to you tom might be better teresa Quote Share this post Link to post Share on other sites
DaisyProudfoot Report post Posted February 13, 2006 Would he be willing to use incontinence pads - they're very discreet these days - that way even when the anal leakage occurred he could bin the pads without worrying about the underwear. I know they're more designed for women than men but perhaps he could position the pad further back on his underwear to catch the leaks. Quote Share this post Link to post Share on other sites
UltraMum Report post Posted February 13, 2006 <'> <'> <'> Paula Quote Share this post Link to post Share on other sites
Kathryn Report post Posted February 13, 2006 Hi Paula, I don't have any practical advice but just sending more <'> <'> . I hope you manage to get this problem sorted out soon. K x Quote Share this post Link to post Share on other sites
hayz Report post Posted February 14, 2006 hi im new 2the forum, i kow how u feel 2 of my sons have aspergers aswel as 1 havin cp down right side+other also has adhd+ocd,my sons r 11+12 the 11yr old does exactly the same as ur son if i try n make him go he sits rocking doing this awful wail noise id love 2 chat with u i live in southeast england=i have 5kids in total keep strong hope u post me soon hayley Quote Share this post Link to post Share on other sites
Kathryn Report post Posted February 14, 2006 Hi Hayley, and welcome to the forum. I look forward to getting to know you. Kathryn. Quote Share this post Link to post Share on other sites
Brook Report post Posted February 14, 2006 Hi Paula, It must be terrible for both of you. I suffered with bowel problems right up until I was 15yrs, I was in and out of hospital, I used to have a nurse visit the house to give me supposotries and enemas. I also used to get to the point where I leaked, the pain was excruciating and by the time I did go I was so constipated it hurt like hell, it then started a vicious circle of not wanting to go because of the pain. The hospital were going to stretch my bowels, but for some reason they never did and when I was 15 it seemed to right itself. I know this is no help to you but, the thing that used to help me loads was a warm bath, and even though I hate to admit it on here, when I was little the warm bath was enough to give me the urge, and sometimes I didn't quite make the loo and the bath copped it. but it was such a relief and the water seemed to ease the pain. Just thinking if your loo was also in the bathroom maybe a relaxing bath might help to give him the urge. Sorry no help. Brook Quote Share this post Link to post Share on other sites
hayz Report post Posted February 14, 2006 Hi Hayley, and welcome to the forum. I look forward to getting to know you. Kathryn. hi im so glad 2 have found this forum,atlast i am meeting people who understand Quote Share this post Link to post Share on other sites
Strange girl Report post Posted February 14, 2006 My son is 8 and has the same prob. I know certain foods in his diet make it worse, intolerance, or if he has a cold or is under the weather, perhaps there's some psychological influences too- Who knows? It's an unpleasant business, and I am probably guilty of exasabating the problem because I am sensory defensive. I find it hard to be convincingly casual and humourous toward a problem which gets to me like nails down a blackboard.. But I try, and several sticker charts have gone by with some success, but to be honest I think it has a lot to do with my son's very fussy diet.. and if I could get him to accept a more colourful, varied, high fibre diet with less dairy, then maybe I could improve the other prob too. I think world peace is more likely tho.. You could try a google of Encopresis. Sorry I can't be of more help, but if its any constellation I know what you goin thru... Quote Share this post Link to post Share on other sites
Paula Report post Posted February 14, 2006 Thankyou every one has been really helpfull. Just knowing its a common problem helps loads.Though i wish it wasnt a common problem. I have looked up on the internet poo fears its got a special name and tried other sites to give ideas on beating deep rooted phobias. Its a viscious circle you see.Hes got this fear of toilet paper.This also extends to all forms of tissue paper even when were out and about and say you get knifes and forks wrapped in paper he freaks and ive to remove it away from him.He wont let me touch any part of his body or wipe even his face with tissue paper. This then in turns means he wont wipe his bum.Combine this with a reluctance to sit on the loo and its a difficult one. His teachers have been told,the gp,the peadiatrician but no one listened.they said hed grow out of it.I thought he would like all his other little fears that came and went. I went into the kitchen last night and cried my eyes out at the why us type of thing the oh gods decended.That made me feal even morre guilty. Later on that vening un promted our son walked over to me and gave me a hug and said i love you mum. What can you do its not his fault.I love him too im his mum we get on with it its what we do its what all the mums and dads on here do. I will try and see if i can find a adult aspie sight also. Paula Quote Share this post Link to post Share on other sites
call me jaded Report post Posted February 14, 2006 Paula <'> <'> <'> We go through something similar when my son's diet is infringed. Combined with his unwillingness to wear clothing in the house... Well I'll leave it to your imagination. I took a long time to decide to do the diet, but it was the best decision. With regard to the paper phobia I know someone who overcame a lifelong phobia with Neuro Linguistic Programming. One session was all it took. Quote Share this post Link to post Share on other sites
LittleRae Report post Posted February 14, 2006 Hi Paula <'> <'> <'> <'> Been there - horrible, isn't it. I think if possible you should tackle one problem at a time, and since the not going/leakage is a health issue, I would concentrate on this first. After 4 years of this, visiting doctors, consultants & dosing with laxatives, I finally let them take my then 9 yr old DS to hospital last november. Over 3 weeks he was 'cleared out' and then re-trained. The training is ongoing - I have them take him to the toilet every 2-3 hours at school & he still takes laxatives each night. I have tried them all and only movicol works for him. I had put the hospital off many times but am so glad I gave in, both for ourselves & DS. It was traumatic at first but he got over it. He was made to co-operate with nurses, who just wouldn't take no for an answer & were prepared to wait all day if necessary for him to perform. Ask your GP to refer you to somebody. With luck they may also be able to tackle the phobia, but you might find that as the toilet becomes a part of everyday life, there will be no pain associated with it and the fear will lessen. Good luck A Quote Share this post Link to post Share on other sites
Paula Report post Posted February 14, 2006 call me jaded I know i shouldnt smile at the thought of no clothing and bowel problems but i did. My son is spending his days sat in night clothes he calls hit chilling out.His siter calls it being a pervert !!!!!!! Thats teenage girls for you. The gluten free diet sounds realy radical.I do find if he sticks to whole meal bread and not many processed foods or high sugar foods or fizzy drinks his bowel leakage is almost gone.And stool passage is a bit easier.But you feel sorry for them when they say can i have a biscuite or go on one can of coke now and againe wont hurt.Then yer sit back and waite for the fallout. Hes just spent the last few days biteing his hands and trying to nibble of his moles there all beelding.hes already had one mole cut of through constantly picking. Luckily thanks to a suggestion to another mum from this site ive got hold of theose chewy tube things and it came today so im hopeing hell chomp and chew that instead of his body parts. Quote Share this post Link to post Share on other sites
on the edge Report post Posted February 14, 2006 I can assure you that I am no cook..but i find easy enough to do the diet..and we have 3 other kids. Is so amazing to see the difference in my son - in such a short time, I could not recommend it enough to anyone thinking there could be any issues in this area. Had to put him back on gluten and caesin for a coeliac blood test -but after two days, all the bloating and diarroah was back and the spaciness and hyper behaviour. Decided that I didnt need a coeliac test to see there was a problem. I guess that it will be a lot harder to get an older kid off his favourite foods though. We had days of our son literally begging for bread!!! Quote Share this post Link to post Share on other sites
Ohforaquietlife Report post Posted February 14, 2006 Hi! I'm new to this site too but I know just how you feel. Our house often wreaks but I think our friends have got used to it!!! My son's methane output must be one of the biggest contibutors to global warming!!!! My son is 8 and has had bowel problems since a toddler. We couldn't toilet train him until he was 5 but the routine of school helped alot and once he got the idea we had few weeing accidents. However, the leakage from the rear-end continues to this day and is some days worse than others. We have had him on a gluten/casein-free diet for quite a while now and it has helped enormously although sadly has not cured it completely. He wears a very thin panty-liner most of the time which largely mops up any seepage - he will take himself to the loo if he needs to poo properly and you can hear the explosion from downstairs when he does, which is about once every 3 days! He also takes Movicol - one sachet daily. We have tried allsorts but this is the only thing that has really worked for him but you need to start from a point where his bowel is empty - this is where the sodium picosulphate comes in. It is supposed to clear people out quickly with one dose before endoscopy but my tiny son needs to take half a sachet daily for 3-4 days before it has any effect but then HE HAS NO CHOICE! We too have gone through phobias - around flushing the toilet and now he can't stand the sound of running water so he has to wash each hand separately with the other over the ear that he can't cover by lifting his shoulder . I can't offer any solutions I'm afraid - only let you know that you are not alone. Incidently, we get the pads as part of his nappy allowance through the health visitor so they cost us nothing. Keep smiling! Ohforaquielife! Quote Share this post Link to post Share on other sites
jb1964 Report post Posted February 14, 2006 (edited) Hi Paula, My daughter (12yrs) has always suffered from chronic constipation since birth - and we too have spent many a night in hospital while she has various medicines, enema's etc. Although the past few years have been better - she's still on 5ml sodium picosulphate per day (laxoberol) which she's been taking a few many years (prior to that it was lactulose every day and sodium picosulphate once per week - but it never really solved the problem - just made the gaps between hospitalisation bigger). We had the original presciption via the Paed - but it's just repeat for us now from our GP. Obviously we have tried to reduce the amounts slightly per day - or leave one day out per week - but it doesn't work. Paed. hopes eventually!!!! her eating habits will improve that much!!! that she won't need it.... Edited February 14, 2006 by jb1964 Quote Share this post Link to post Share on other sites
Melow Report post Posted February 14, 2006 People here will recall I have had this problem a number of times, my lad positively enjoyed handling his poo, and hiding it around the house ! (Peeing all over the walls too), It was a great game for him for a long time. There's no quick answer I'm afraid, my lad stopped for a year then started all over again. You will not be able to force him to sit on the toilet, it won't work, it will backfire and take twice as along, he will dig in, my son's issue is sitting on the toilet, he hates it. I think with AS kids this form of behaviour gives them the MOST control over there life frankly, NOBODY ignores that ! I did wonder if he was seeking attention and all sorts, but it wasn't that. I'm afraid the school and I had to admit a certain amount of defeat over it, if we go with him to the toilet he will sit, but get very distressed about it, AND wipe his bum, but left with himself reverts to pooing into his hand and throwing it into the toilet, then, washing his hands thoroughly, we still haven't succeed to get him to sit on the toilet alone. He by-passed the school at day one (As early as 4 yrs old), he has tremendous bowel control, he would 'hold' it all day, and then soil himself the second he stepped outside the school gates, I carried spare pants with me every day when I picked him up. Hence the arguments I had at school to ask then help me address the issue via positive encouragement, they said he presented no problem at school, they didn't follow he was using this 'control' to avoid the issue there, so Dad and Mum were viewed 'poor parents' for a long time, unable to teach basics to their child grrrrrrrrrrrrrrrr! Nappies until 6 yrs old too. We tried everything in the advice book, and consulted other parents, we still haven't really managed to do it. I suspect it will 'click' with him one day, and he will be OK, this is a facet of his progress. He'd go years not doing one thing, then suddenly decide he wants to do it, we just have to hope, and encourage. You cannot go with him every time to the toilet, and he is getting older, no school he went to would entertain the idea, anyway... see a social worker (Right !!!), or a community nurse (RIIIIIIIGHT !!!), we asked and saw neither the nurse DID send me a book to read,and even suggested I make a game of it, but knowing my lad, he'd play that game for the next 20 years and I am NOT into that option. He seems to not be deterred by the smell (?) Quote Share this post Link to post Share on other sites
mel Report post Posted February 14, 2006 Having the same problem with my son no dx). took him to the docs the other day and doc seemed more concerned about the behaviour my son was displaying (climbing the curtains, screeching, hitting and kicking me when i tried to sit him on my knee etc). On the plus side he has referred S to a paed but i suspect that it was his behaviour that did it, not the poo problem i originally went to see doc about. Quote Share this post Link to post Share on other sites
Melow Report post Posted February 14, 2006 Having the same problem with my son no dx). took him to the docs the other day and doc seemed more concerned about the behaviour my son was displaying (climbing the curtains, screeching, hitting and kicking me when i tried to sit him on my knee etc). On the plus side he has referred S to a paed but i suspect that it was his behaviour that did it, not the poo problem i originally went to see doc about. They haven't a clue some GP's Mel, it's what's known as passing the issue on to someone else... They don't really LISTEN ! Quote Share this post Link to post Share on other sites
niki Report post Posted February 15, 2006 POO PROBLEMS? I can relate! my son has a phobia of..............................................TOILET SEATS! When he eventually decides to go (once a week if we are lucky) after days of cronic wind and skids in pants, he will go but refuses to do so clothed so he gets completely naked and puts his feet on the loo seat! he looks a bit like a dog having a poo but with his feet perched on the seat! go figure! I find a completely childish sense of humour helps with this oh and nose pegs and marigolds for doing the laundry! Quote Share this post Link to post Share on other sites
elaine1 Report post Posted February 17, 2006 wow u can never say that our life is dull can you! Quote Share this post Link to post Share on other sites
~Jonathan~ Report post Posted February 18, 2006 Blimey, I thought I was the only person who did this. From the age of 5-6 I refused to go to the toilet because I thought my stomach was falling out and would do a little dance when the feelings of wanting to poo came on and force it back inside. The very first day at school, when I took off my pants, they were so severely stained that Mum had to throw them away. I can remember playing toy cars with a friend at the bottom of the stairs when I felt the feeling coming on and I had to go upstairs to do my dance and a small ball of poop fell out and rolled down the stairs. I never forgot that. David (my friend) said "ugh, that's plop." Well, you can imagine how embarrassed we both were. He told my Mum and I had to go and see the doctor and the health visitor came round. I would then get severely constipated because of all the waste that was impacted in my body and she would have to sit with me while I squeezed and strained on the toilet. The smell must have been horrendous. Poor Mum I eventually went through this then went through a length of time wearing my underpants in the bath because I feared my waste products would slip out and float in the water. Then I went through that and then had a fear of having my toenails cut and then through a phase of screaming every time Mum washed my hair because I wouldn't do it myself because I was afraid I would get scalded by the water <'> Sorry you're going through this. Quote Share this post Link to post Share on other sites
curra Report post Posted February 19, 2006 I just read this thread, sorry if I'm a bit late to post. My son is 12 and also "leaking" on a daily basis for years. What you describe could be happening over here. GPs, peads, counsellors, you name it, have tried to find a stop to the problem, but nothing. My son says he "forgets" that he needs a poo, or that he doesn't notice when it happens. Totally fed up with washing pooed pants every day I had for once something like an inspiration and told him I'll give him a pound for every "clean" day and it has worked so far for the last week, with only one exception, so there has been a noticeable improvement. There's some kind of association bewteen money and poo ... It can be expensive though... Curra <'> Quote Share this post Link to post Share on other sites
Paula Report post Posted February 20, 2006 <'> <'> Thanks for all the replies. Its obvious poo toilets and the whole thing is a common problem. And in a way some of what youre going through makes my poo nightmare not seem too bad. curra I too got fed up of washing smelling pants,the staines wont come out and you end up with poo in youre washing machine.Not nice soileing everything else.So now i buy packs of ten undies form primark or the market for ?2/?3 a pack of ten and just bin the ###### its easier and in a way cheaper. My son also has awfull wind and flatulance.I tell yer its a good job no one smokes coz i dread to think what would happen if you lit a match. Quote Share this post Link to post Share on other sites
