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Idiopathic Constipation
by Anonymous - 12 Nov 13 - 9:39
Hi, everyone, I'm desperate for some advice. My 8 year old Grandson has had chronic constipation since he was 6 months old. He has continually used laxatives on a daily basis either movicol dulcolax or lactulose. The doctors have been telling us for YEARS he will have to stay on laxatives until his bowel shrinks.(which they claimed initially would take 6 months!)
My daughter is worried, because, even on the medication he is constantly impacted. She believes there is a serious problem the doctors have missed, but they say there is NO criteria for tests as they believe he is ONLY constipated but a "complicated case". We feel there is some problem with his muscles but with no medical knowledge we don't know what tests to ask for. We asked for a second opinion but that doctor was worse than the 1st. We do NOT trust the doctors as they stopped my Grandson getting a transfer to another hospital. Every time we go to the hospital it is very upsetting and embarrassing because of the situation with the doctors. I'm extremely worried that my Grandson has been taking laxatives for so long without it sorting the problem, that it has done irrepairable damage to some muscle,and because of that my Grandson will never be able to stop the laxatives! The doctors have admitted there is muscle damage but have NOT given an explanation on which muscles OR what the damage is. So we do not know IF my Grandson can be cured. The doctors have NOT done ANY tests on his muscles. Blood tests have RULED OUT coeliac disease& thyroid disease. We've tried various diets, again dietician has stated NO problems there. My Gandson has a very healthy high fibre diet. He drinks so much liquid during the day it's a wonder he's not BOGGED DOWN !!! (1 litre prune juice in 2 days!!)
My Grandson is so distressed by his condition as he can soil up to 10 times a day. He is very withdrawn at times( normally very vivacious) and has been so depressed that he is saying "HE WISHES HE WAS DEAD" this is very distressing for the family to hear. We feel helpless that a little boy is so devastated by his condition that he feels THAT BAD yet WE are POWERLESS to help him. Doctors told us constipation IS NOT a criteria for psychologist, so again NO HELP.
Is there anyone who has been in a similar situation and eventually come out the other side? Or will that lovely wee boy grow up to be a very depressed dejected disillusioned adult still soiling on a daily basis?
I'd appreciate some advice.
Thanks.
 
 
Idiopathic Constipation
by Anonymous - 12 Nov 13 - 12:00
Hi there,

I'm sorry to hear about your Grandson - it must be such a worry for you all. You mention that he is still impacted on medication and so I wonder if his bowel has ever been completely cleared out? This is usually done with ever increasing doses of Movicol over 5-7 days until the child is pooing brown water - then you know the bowel is clear. At that point you go down to a maintenance dose and start a new toilet regime to aim to keep poo moving through the system so that the bowel has a chance to shrink back to normal size. If the impaction isn't cleared to begin with then this can't happen

There is no research that suggests that long term use of laxative damages the bowel and Movicol isn't absorbed into the bloodstream and just keeps the water that it is mixed with in the bowel to soften up the poo. Some children with Asthma need to use a puffer to manage their condition into adulthood, & about 25% of children with constipation will need to use laxative into adulthood to manage their constipation

It's understandable that you are frustrated by the Doctors and so if you haven't already done so, you may like to read the NICE (National Institute for Health & Clinical Excellence) Guidelines on Childhood Constipation to be aware how Doctors are advised to manage constipation in children - http://www.nice.org.uk/cg99#sthash.62Uwmtpe.dpuf

If you'd like to talk to us in more detail about your Grandson's situation the perhaps call the Helpline - 0845 370 8008 open 9.30 - 4.30 Mons & Weds

Do hope this helps and do let us know how things progress for your family and your Grandson. I'm sure some parents will be able to offer some ideas/experiences too!

JayneM@ERIC
 
 
Idiopathic Constipation
by Anonymous - 16 Nov 13 - 9:53
Hi Jayne, thanks for your response. I've checked NICE Guidelines and from what I've read Doctors need to have a cause and probable diagnosis to do further tests. SO as the've already decided it is constipation, doctors keep telling us that laxatives ARE the only treatment.
But as my Grandson is now 8 and still no better(and thousands of other children in UK suffering daily) I DO NOT UNDERSTAND WHY doctors will not do further tests and scans to look for another cause( I.E muscles not working properly?) and perhaps find an alternative treatment I.E Biofeedback, rather than leaving these children on ineffective laxatives for years OR sometimes the rest of their lives!
The doctors have stated chronically constipated children have psychological problems caused by their condition. Yet these children are DENIED psychological help as constipation does not meet the criteria to be seen by a psychologist. Where's the sense in that?
It is helpful to realise we are NOT alone, but also causes anxiety to see thousands of other children and their families are feeling the same desperation as my family. And the sheer frustration that WE ARE UNABLE to do anything about my Grandson's condition OR the doctors reluctance to try other treatments. I will contact your helpline soon to see if you can help us further.
Thanks.
 
 
Idiopathic Constipation
by Anonymous - 18 Nov 13 - 13:24
I don't know if it would help or not, but I've just replied to another post suggesting that Movicol and Senna together may help. It has with my son. Movicol alone really messed my son's system up, but with Senna it so far appears to have solved the problem for him. The two work together in different ways - one softening things up and the other making sure it all gets released (I think that's right). We also pushed for tests. He had blood tests for coeliac and various allergies. All came back clear so we are currently still in the world of 'idiopathic constipation' looking for an underlying cause, even if we may have found some kind of solution - for now at least. It may be worth asking about the two together - I think you have to be careful using Senna with children though so do make sure it's discussed with a medical practitioner.
 
 
Idiopathic Constipation
by Anonymous - 18 Nov 13 - 14:06
Hi there,
I've just put a reply on a similar post.
One thing you haven't mentioned, which seems to be working for my girl, is for her to sit on the toilet half an hour after her tea every night.
It doesn't matter if she doesn't have a poo every day.
It apparently trains her bowel to open up at this time every day.
It's early days for us, only started last Tue, but she has had a poo 4 times since then.
I've also been told it can take months for bowel muscles to get back to normal and feel the right sensations again.
I hope this helps.
 
 
Idiopathic Constipation
by Anonymous - 19 Nov 13 - 22:27
Hello there, my daughter has had Idiopathic Constipation since she was a baby and is now 9 years old. Regarding your concerns about your grandson's muscle control and the medics lack of investigation, just thought I'd let you know my experience. My daughter had all the tests, but there was no underlying physical problem for it. She has been on Lactulose and is now on Senna but neither have stopped the constant overflow. My understanding of my daughter's condition is that whether it started for psychological or physical reasons, she now has a very distended bowel, and only goes to the toilet once a week. The idea is that the medicine will reduce the size of her bowel eventually. My experience overall has been awful. Nobody wanted to take responsibility for her problem, I have seen so many specialists, I can't remember, and it was only by chance that somebody suggested a continence specialist. I think we seem to be in a similar situation, but keep going with the medicine, it will eventually work. I am also about to start the once a day on the toilet method.
 
 
Idiopathic Constipation
by Anonymous - 20 Nov 13 - 10:45
Thanks for the posts. We've asked for Senna and lactulose together but paediatrician said too difficult to get dose right.! Yet the've got him on Dulcolax with lactulose at moment.!!!!
WEE one is sick when taking movicol , we don't know if it a reaction to long term use of movicol or if Grandson just had enough of volumes he has to drink! . He is pooing but not right, he had to have enema last week on top of medicine.STILL NOT CLEARED OUT!
We do make him sit on toilet after meals he doesn't always poo but it is always a battle to get him into the toilet and keep him there. He often goes purple in face trying to squeeze something out usually nothing comes or maybe a tiny poo. We've tried bubbles, books games etc but he is just so fed up with this horrid condition. We've even attended a constipation clinic but the nurse there has admitted she does not know what else to do.
I am amazed that so many children have such a terrible time with Doctors not taking it serious enough, and just fobbing parents off with laxatives.
They may be the answer for many constipated kids BUT clearly thousands of children are suffering unnecessarily if doctors won't or can't do tests on muscles or nerves to be sure the've not missed something vital to sorting these kids when laxatives are clearly NOT ENOUGH!!!!!
We know there is something NOT WORKING PROPERLY in my Grandson He was in hospital back in September this year for a clean out it took almost 2 weeks and he still had poo in him but doctors reckoned it was within a "normal range". So again they know the laxatives are NOT WORKING PROPERLY but keep saying it's all the have!
My biggest worry is that they just keep giving him laxatives for the next 20 years then when the laxatives stop working they finally do tests but tell my Grandson it's too late to sort him and he ends up with a colostomy bag! I'm lobbying my local MSP to see if the Government can help. I wish we could afford to go private.
I do hope your children recover soon.
 
 
Idiopathic Constipation
by Anonymous - 20 Nov 13 - 11:05
To the person with 9 year old daughter in same boat as us. Do you know what tests your daughter had? I've just found out about some for muscles and nerves, and we're going to see specialist soon so we hope they will be available and suitable for my Grandson. I sympathise deeply with you, as it is very distressing for ALL concerned especially the children.
Send your daughter a big hug from me.
We've been told from doctors since Grandson was a baby that he needs the medicine to shrink the bowel but I fear because they can't get medicine right, his bowel will never shrink back! Doctors won't listen to my concerns they just keep saying it will shrink eventually.
Best wishes to you and I hope your daughter recovers soon.
 
 
Idiopathic Constipation
by Anonymous - 13 Mar 14 - 14:36
Wow i am fully blown away as i have a daughter turning nine in 3weeks &it is very sad that our babys have to put up with this condition my daughter started to have problems wuth pushing her poo out at the age of 6/9mths i have been battling with her from agethen on at age of 2 having leakage constantly & having to change her from every 1hr down to every 5mins she has been on fibre drinks liquid drinks a good high fibre diet & also had an uultrasound with nothing working my local gp i have not gone back to as she really doesnt understand the severity of it it truly is worse than having a baby in nappys but in saying that i will do anything to make her feel comfortable.my daughter didnt go to school for 5days last week as she couldnt.control the leakage &was just fed up &itbreaks my heart she ked me when would god hesl her"' &why wasnt he..i have now finally got another referral to see gastro peadiatric specialist i also sit her on the toilet im just soo confused &worried i really wish all these precious children the very best in health&recovery
 
 
Idiopathic Constipation
by Anonymous - 23 Mar 14 - 19:32
Hi, my daughter is 13 and has suffered with constipation her whole life also. After various diets and medication her whole life we are still no further forward. 18 months ago she had her appendix removed and did not open her bowels after 18 days and was being sick after every meal. The nurse is the hospital actually had the nerve to say she was making herself sick. We finally thought we had a breakthrough when a doctor on the ward at the time said this want normal and referred her to a gastro. After monthly visits his concern was Hirshsprung disease, 2 months later she saw the surgeon that totally ruled it out saying she would have suffered her whole life (she has). To date she has been discharged today from hospital after 2 enemas and movicol, 45mg sene daily and still no poo. The doctor had the cheek to ask if she was being bullied at school and going on hunger strike! They have discharged her today after still not opening her bowels for 2 weeks, after saying her X-rays look fine. Very concerned and will be back to clinic Tuesday to see what other rubbish they fill us with. (However one doctor did mention in the hospital that if she were her patient she would stop medication as it is not working and give bowel wash outs 3x a week. Hopefully she will suggest this to her consultant). Not enough being done out there!
 
 

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Education and Resources for Improving Childhood Continence
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