Need help with sons bowel problems

cottonhead

I agree that you need to go back to the GP for a referral to a specialist. If your son is dry then he obvioulsy has some control and the desire to be dry. If he is having bowel accidents it does sound like he has a control issue. I dont know anything about this condition but I would press for a referral otherwise it might go on and on and will just become more distressing.
Foudn this below - seems to be quite common so there will be a professional somewhere who can help.

http://embarrassingbodieskids.channel4.com/conditions/incontinence/

plumpmouse

Have a look at sorbitol.

I started being very poorly last Aug resulting in me being refered for tests for uc, crohns. The test came back negative. I was amongst other things struggling to leave the house as i would need to go the toilet immediately. I was terrified of having an accident out of the house.

I then decided to find out what was going on as hospital wouldn't help further. Read a lot of info and tried to cut sorbitol out of my diet.

It seems to have helped, over the last couple of months I have been a lot better

The thing that made me so ill was sugar free cordial, something I would never have suspected.

Hope you find something that works

Jake'sGran

Has anyone mentioned IBS? Your son's problem is much more severe than IBS. I have had this problem (IBS) for donkey's years and my dear, brilliant grandson has a problem too but compared to your son our problem can be managed. Has your GP suggested he takes Loperamide?. The surgeon who carried out my bowel surgery told me that this drug is very safe but it no longer works for me and I use Codeine but not every day. There is a doctor at Withington Hospital and he is using hypnotism which has worked well for many people. He may have retired by now but you could ask for a referral, there is bound to be another doctor using the same treatment. Something has to be done for your son or it may lead to other problems as he gets older. I hope the problem will diminish or become easier to handle. Good luck.

carefullycautious

Not trying to diagnose as this is not allowed but have you looked into

Dumping syndrome.

Justicia

Can't offer any advice but from what you've written (him just sitting in it, even alongside his friends) the lil' guy sounds depressed and resigned to his (assumed) fate.

At 30, it'd be terrible - can't imagine what it's like for a 9 year old... I hope that you are able to find a viable solution for him.

milliemonster

Thank you to everyone for your replies, I will take a look at some of the topics you have mentioned and suggested, he has managed to go on the toilet tonight (after 2 accidents) and it was a formed soft stool, not a lot but it was there.

I think the GP didn't suggest anything else as a) he knew he is under the paediatricians and suggested we go back there (the paediatrician has always said if we have any issues to just speak to his secretary and he will see him asap, trouble is he is in Sri Lanka on an extended holiday til June at the moment so that's out of the question) and b) he did want to do a rectal exam but my son was having none of it.

The thing that makes me the most sad is the things he is starting to miss out on, he goes to cubs and won't go on a cub camp as he's worried he will mess himself and not know what to do/who will help him. I worry when he is on a school trip for the day etc etc I'm going to give ERIC a call tomorrow and also get in at the GP's in the morning (I have already had a chat with my son and explained they may want to examine him and what this may entail and so far he has accepted this)

He isn't depressed or sad to be honest, he is a happy little boy and even when he's messed himself he just carries on as normal, it's only when I 'notice' that he then gets sheepish and a little withdrawn and upset, but it's so difficult because as he has never been continent, he doesn't know any different, even though we have tried to explain that when we grow up we go to the toilet and not just do it in our underwear! he sees and accepts that but just states he can't make it to the toilet in time most of the time

SqueekyMouse

Hi there, I sympathise with you totally, I have some limited experience of bowel urgency, but in adults, not children.

You really need to go back to your GP to get referred. You may need to ask for more than one referral to address the various issues you describe:

milliemonster wrote: »

he says he doesn't get the sensation until the last minute and then rushes to the toilet to go but can't hold it. When it's not a proper formed stool and a bit on the soft side (sorry if TMI!) he just does it in his underpants, and doesn't even bother going to the toilet.

Firstly, I would guess you need to see a colorectal physiotherapist to address his ability to hold his bowel movements until it is convenient for him to go to the toilet.

The average person, can feel the need to go and hold on for hours or days. We feel the urge to go to the toilet when the faeces travels down to the sphincter, putting the muscle under pressure. This urge then fades in most people if they cannot get to the toilet for whatever reason. This is because the pelvic floor muscles squeeze and in effect push the poo back up (just a little)! This happens totally unconsciously. However when the pelvic floor muscles are weakened (by chronic constipation for example) or there is a defect in the sphincter (an anal fissure for example) this process may not occur, causing the urgency you describe.

The way to address this urgency no matter what the cause is to strengthen the pelvic floor. Getting adults to do pelvic floor exercises is hard, I can't imagine how to get a child to do them, but anyway...

The way to go about doing them properly is to first make sure you are squeezing the correct muscles - these are the ones you use to stop the flow of urine mid pee. (Once you've found out how to contract these muscles don't keep doing it mid pee as that can lead to urinary problems). Contract the muscles for up to 10 seconds, then release for 4 seconds and repeat up to 10 times. If you can't manage 10 seconds 10 times, then hold for less time, but do 10 reps and build up to 10 seconds. Do this 3 times a day.

Also when he feels the urge to go, but can't make it to the toilet in time, get him to do one such contraction as he's running to the loo. This will mimic what happens in a normal bowel when we need to hold in poo

Finally assuming he's made it to the toilet without having an accident. He may benefit from seeing if he can continue to hold his poo for 1 min more whilst he's sitting on the loo. This again helps to strengthen the muscles and the time he is able to hold on can slowly be built up.

A colorectal physiotherapist will be able to assess if his pelvic floor needs such exercises and will be able to tell you if he's doing them correctly simply by inserting a finger into the rectum.



Secondly you said that your son is on movicol but it doesn't seem to be working, as you say he
can go from being constipated to loose.
There are many different laxatives available - some bulk up stools by adding extra fibre, others reduce the amount of water absorbed in the large intestine. It might be that a different laxative may suit him better. I'm sure that we all know it can be a dash to the loo when we're loose - so if he has poor control of his bowel already it will be especially difficult to expect him not to have an accident.

The consistency of a "healthy" poo should be like toothpaste. I would look at his diet - so increase fibre ie fruit, veg, wholemeal bread etc and look again at the laxatives to try to achieve this.

And as you mentioned above check for any food intolerance which he may have.

Your idea of a food/poo diary is excellent. I would start it now, to see if you can see any patterns yourself.

Get back to that doctor and make sure you see someone ASAP
xx

andrealm

milliemonster wrote: »

Thanks Kate, my son has never had a fear of going to the loo, he doesn't really seem to get constipated now either, he is on movicol and has been since he was about 4 but it doesn't make any difference, we are consistent with giving him it, he has one sachet at night and again in the morning, he never has any pain passing a stool and he never has to strain, what I find so odd is that he can be with you in the same room and he makes no obvious outward sign that he is passing anything, you just suddenly get the smell and ask him if he's done one and then he owns up

It sounds like it is still constipation, he won't have pain or strain because he's on the Movicol. I would ask for him to be referred to the constipation clinic. They can do tests to try to determine if there is a reason and would be better able to advise on his medication. If he has small amounts of soiling, it might mean that he needs a bigger dose of Movicol.

saverholic

I wanted to second Jo84 recommendation. I've heard really good things about ERIC. The website has subsections designed for children and for teens as well as message boards if you think he might be interested.

If he's having regular accidents could he try going more often even if he doesn't feel like he 'has to'. It might help cut down the number of accidents. I think the recommended advice is to try going to the loo about 15-20min after a meal because eating encourages the bowel to move.

I hope things get better for you and your son. Good luck

Aldahbra

You have my deepest sympathy, my son was medically constipated too. It had a serious impact on his self esteem.

milliemonster wrote: »

My 9yr old boy has a thyroid problem since birth and has never had control of his bowels, he has never had a regular bowel habit and can go from being constipated to loose, doesn't go every day etc etc.

I was told by the hospital that when constipated runny poo forces its way around the hard constipated poo. So that runny poo is also an indicator of constipation.

milliemonster wrote: »

At our last appt in Nov, he increased his sachets to 2 per day but this has made no difference and I am now very concerned as this is affecting his self esteem and schooling.

Two sachets a day is NOT a high dose of movicol. My sons is now reduced down to 2 sachets a day( he also is 9). Now that he has control of his bowels. He was on 3 sachets in evening and 2 in morning at one time and the plan was to increase it if that didn't work.

milliemonster wrote: »

He is unable to control his movements at all, even when not constipated and having a regular movement, he says he doesn't get the sensation until the last minute and then rushes to the toilet to go but can't hold it. When it's not a proper formed stool and a bit on the soft side (sorry if TMI!) he just does it in his underpants, and doesn't even bother going to the toilet.

His bowels are stretched and he has not got the normal feelings. I found this very hard to understand when living through it but it is true. Even when the constipation is properly under control it will several months for his descended bowel to shrink and for him to learn the feelings.

milliemonster wrote: »

I am at my wits end as it's now a daily occurrence that I suddenly get the 'smell' or can see the stain eeking through his trousers and have to tell him to go to the bathroom to clean himself, he won't tell me why he doesn't go to the bathroom, he says he doesn't know, he seems happy to sit in it even in front of his friends, but at the same time he is embarrassed by it and refuses to let me help clean him up. I just don't know what to do about this.

The hospital got the school nurse involved for our son. He was given a funded medical hour. This hour was to provide a TA to make sure that he went for a poo at the time where about he usually needed one. Not just to go into the loo and walk straight out again, which he would do. The stress of this situation made my son want to pretend that it didn't happen rather than face something that everyone else could manage and he had no idea how to do. The support at school was instrumental in bringing about a change. We also made him sit on the toilet at regular times when we thought he was likely to need it. If he did he did, if he didn't he didn't.

No recriminations when soiled. Emphasis on the I'm not cross that you have poo in your pants, I'm cross because you tried to hide it/haven't cleaned it up....

milliemonster wrote: »

I did take him to the GP as I wondered if he had some sort of dysfunction with the sensation to tell him he needed to go or the tone of his anal muscles but GP said this is unlikely.

This is due to the stretching of the bowel, I'm amazed the hospital haven't talked this through with you.

milliemonster wrote: »

I know this kind of thing is very common as I have done a lot of reading, but i just don't understand how he can sit in his own poo at 9 years old in front of his friends at school (who have started to notice) even at the dinner table, it's not fair on the other kids.

He really, really honestly can't feel it.

milliemonster wrote: »

School have been great, they have sorted out the disabled toilet at school for him to use, he has his own clean things in there discreetly to use and a bin provided that school have bought for him to put dirty wipes in. I bought special wet wipes for him to use.

milliemonster wrote: »

We have tried sticker charts, rewards (giving him 50p each time he manages to go and do it on the toilet and not in his pants) etc etc but nothing works, we usually have a mess at least once a day, the amount of underwear I am going through is a nightmare. We have tried ignoring the problem, not making a fuss, making a fuss!, telling him off, being reassuring etc etc over the years but nothing is making a difference at all.

There really is no point in using reward charts because he can't help it. We did try this, of course, but it really just puts more stress on him. HE CAN'T HELP IT. IT IS NOT HIS FAULT.

I had to treat pants as disposable for a number of years too. I just bought the cheapest.

milliemonster wrote: »

We even had an episode last week where he woke up crying in the middle of the night because he had poo'd himself, this is surely not normal at 9????

Has anyone got any advice on where I go from here? He just seems to have accepted that this is how he is and there is nothing he can do about it, our next appt is in June so I am planning on doing a food diary and a bowel movement diary on him for a month before we go to show his consultant to see what suggestions they have next.

Please help!

This has been going on too long. I would go back to your GP and get him to let your son see a specialist in child constipation not just a pediatrician.

When my son was having the level of problems you are describing I was seeing a member of the team by-weekly. We only saw the specialist a few times had regular contact with other members of the team, nurses I think.

I understand that you are a nurse yourself, but you are not a specialist in child constipation and you MUST get that specialist advice.

The dose of Movicol sounds very low for a boy of your sons age(think of his size compared with a 3 or 4 year old), with the problems your son has.

Sitting on the toilet at regular times, not for too long if nothing happened, helped at the start of his recovery. We found that after every meal was a likely time. Our son was younger but we found giving him a book or a DS on the loo helped take his mind off things. He was so stressed by the idea of the toilet and anything to do with it. It probably was quite painful as well when the huge poos eventually came out.

Obviously he must drink more than another child his age and size, the movicol draws moisture from the body to work. These fluids need to be replaced. Also a high fibre diet helps. Wholegrain etc. We found that explaining to our son that these foods would help him use the toilet properly was motivation enough for him to eat them. He didn't want to be like that. Strangely I was told to limit the number of bananas because they make constipation in children worse, whole grain bread NOT white bread and limit bread intake, and apparently there is incidental evidence that milk can aggravate constipation.

I didn't really limit milk and made sure he had some daily, and I still give him his bedtime MOVICOL in chocolate flavored milk.

You really must get proper medical advice on this. A couple of visits a year is just not enough. This is a medical problem and the longer it goes on the worse it is and the harder it will be for your son.