A NHM Readers experience: Encopresis (Severe constipation in young children)

This is a really heartbreaking post that a NHM Reader has asked me to share with you.

Please, please, please DO NOT tag anyone on this post in Facebook or any other social media. Thank you for your understanding.

The Mum who has sent this to me has asked that if anyone else is dealing with the same situation to please contact me, NorthHantsMum@gmail.com, and I will put you in touch with her.

The Mum has also asked me to state that she is absolutely NOT a medical person and this is just an account of her experience, not in any way meant to provide medical advice.

If you have a unique parenting experience that you would like to share with other NHM Readers, in the hope that your experience might help others, please email me your text and pictures to NorthHantsMum@gmail.com.

What is encopresis?

Encopresis is a symptom of chronic constipation. Children do not know or understand the sensation of when they need to do a poo.

Potty training

When my daughter first used the potty for a poo, when she was 18 months old, she screamed the house down. I was warned that she may have a negative reaction to it because it can be a bit of a shock to a toddler, when they no longer poo in their nappy but actually feel the poo coming away from their bodies. We thought nothing of this but continued trying to potty train our daughter.

When my daughter turned 3.5 years old I started to worry as she was still having daily poo accidents at nursery (she attended nursery 2.5 days a week). Nursery started saying that I needed to try to potty train her in earnest, despite us having tried a number of times.

Realising things weren’t “right”

With 9 months to go before my daughter started school and shortly after my daughters fourth birthday, I got the health visitor involved. She came round and gave me lots of information, particularly about the eric.org website. We had some success, for example my daughter did her first poo in the toilet just after her fourth birthday. The Health Visitor came back a month later to see if we had made some progress. We tried the marble in a jar solution and it seemed to improve things, but it didn’t last. The health visitor told us it was a developmental issue and would resolve itself eventually.

Doctors

In June 2015, three months before my daughter was due to start school, I decided to get the Doctors involved as my daughter was making no further progress with doing poo’s on the toilet and we wanted to get things resolved before she started school in September 2015. I requested a woman Doctor as I felt this was most appropriate. The Doctor questioned my daughter about her using the toilet and said she was very grown up for her age as she answered the Doctors questions far more comprehensively than expected. The Doctor then gave her a physical examination but found nothing physically wrong with her.

At the same time we were having the settling in periods at my daughters new school. I mentioned the issue that my daughter was having to the teacher, who informed me that it wouldn’t be a problem but I needed to check with the teaching assistant. I spoke to the teaching assistant who informed me (quite rudely) that if my daughter wasn’t capable of “cleaning herself up” then I or my husband would be called into school each time, to clean her ourselves as nobody at school was able to touch her because of child protection policies. (I have since found out that it was unacceptable for her to even suggest this).

At this point, our daughter refused to clean herself so I spent three agonising months worrying about whether I and/or my husband were going to be called out of work regularly to sort out daughter out. It was even suggested by another “helpful” person that we homeschool our daughter until this “issue” is resolved.

School

My daughter started school in September 2015 and we were still no further forward. She was still having daily accidents in her pants. The school were extremely unhelpful. I felt judged and the Teaching Assistant implied on a number of occasions that we hadn’t tried to potty train our daughter. It was pretty awful that my daughter would run out of school at the end of the day and the first thing she would say was how many accidents she had had that day. If my daughter didn’t come straight out and tell me, the Teaching Assistant would announce it in the playground.

In October 2015 my four year old daughter was bullied by some girls in her class. My daughter wasn’t good at telling people when she had done an accident, probably because she was embarrassed even at that age (One of the symptoms of encopresis is that you can no longer smell your own poo’s and I also think she had become immune to the smell.)

Two girls in her class started calling her “stinky”. When she came home from school that day she was very quiet. I knew something was wrong but she wouldn’t tell me. At bed time, I asked her what was wrong and she burst into tears. Proper, awful, body rocking sobbing. It was utterly heart breaking and totally gut wrenching to have my four year old in a state of complete distress that I could do nothing about. We explained gently to her that she needs to tell the teacher or teaching assistant when she’s had an accident. I completely fell apart that night after she cried herself to sleep in my arms.

The next day I spoke to the teacher about the bullying incident and she shrugged her shoulders and said that, despite them trying to ensure that no bullying happened at school, there was nothing she could do about it. Ironically the subject of anti-bullying was covered at school that week but this clearly didn’t mean anything in reality! I was furious so got straight onto the Doctors for another appointment.

I tried to get an appointment with the woman Doctor who had given my daughter her physical examination but, for whatever reason, she wasn’t available. I had done more research by this time and was utterly convinced that my daughter had encopresis. My husband and daughter came to the Doctors appointment as well. The Doctor told me that my daughter didn’t have encopresis (without even checking her over!) and that I was clearly a neurotic mother and that my daughter would learn to use the toilet in her own time. I then requested to be referred to a paediatrician (a friend had reminded me that my husband had medical insurance cover for our family and my daughter would be covered under this) and he refused to refer us to the paediatrician until after my daughter had tried two weeks of Movicol, the laxative. We tried two weeks of movicol, a low dose, and it made no difference at all.

In the meantime another friend had been to see the School nurse for a medical issue that her child was having and she mentioned the issues we were having. (I will always be extremely grateful to my friend for her help with this).  The school nurse said that I had to demand that the Doctor refer us to the paediatrician otherwise they wouldn’t do anything.

I then phoned the Doctor, again having to wait another week for a phone call appointment and had a twenty minute discussion” with the Doctor who eventually gave in and said he would give us a referral but “it wouldn’t make any difference because your daughter doesn’t have encopresis”.

I phoned the school nurse (did you know there are only 3 school nurses that cover ALL of the schools in North Hampshire?) and left a voicemail. They never called me back.

I mentioned in passing to the teacher at school that it was probably encopresis. She had never heard of it before and said there was nothing she could do until it was diagnosed by a Doctor.

By this time it was Christmas 2015. It took a week to be referred to the private paediatrician and we managed to get an appointment between Christmas and New Year. (I can’t tell you how grateful I am for private medical insurance!)

We spent 30 minutes with the paediatrician. She spent 15 minutes talking to our daughter about how she needed to use the toilet and why wasn’t she using the toilet as she wasn’t a baby. She then asked to check over our daughter’s tummy. Immediately her tone changed. She said she could feel impaction and that our daughter needed an X-ray. We had the x-ray there and then (which our daughter really enjoyed! Children! ) and were able to look immediately at the picture. The Paediatrician explained the picture and showed that our daughters bowel was so large that the impaction had expanded to under her ribs and it was one of the worst cases of encopresis that she had seen in 15 years of being a peaditrician. Our daughters lower half was literally full of poo.

All of the dark patches are poo.
All of the dark patches. including in her ribs, are poo.

She put our daughter on a hard core case of laxatives (8 sachets of movicol at one point) for two weeks. We were literally swimming in poo. It was awful but my daughter coped admirably. We cancelled all of our plans between Christmas and New Year because we needed to be at home to “sort things out”.

It was a huge relief once we had the diagnosis and I thought our troubles were over…

I phoned school to explain the situation as my daughter’s laxatives didn’t finish until the Thursday of the first week of school. I was told that because they didn’t have a shower or the facilities to clean her up, she would need to stay home. So my daughter had to have four days off school whilst the laxatives “cleared her system out”. I spoke to the head teacher who sympathised with our situation and she said she would get the school nurse engaged for our support.

We went back to see the paediatrician and talked through the different strategies that we would need to engage. Our daughter would need to sit on the toilet for 10 minutes as soon as she got up and that she needed to sit on the toilet frequently throughout the day. We needed to make it as fun as possible. Lots of games, books and toys in the toilet to keep her amused and keep it “fun”.

We tried all of these strategies but it was extremely distressing. Our daughter would scream relentlessly if we tried to get her to sit on the toilet. It took all of our negotiation skills to get her to use the toilet at all for a while.

Six weeks later I saw the head mistress and asked if she had heard back from the school nurse. She said the School nurses were very busy and as our daughter wasn’t a critical case they would get to her when they got to her.

The next day we had parents evening. We were told by the teacher that our daughter was extremely “behind” and unlikely to catch up because she had missed so much class time because of her accidents and would be failing YR. When I asked the teacher what she was doing to resolve this she responded with: “I have 29 other children to teach”.

It took about 3 hours for this to sink in and it was only when I got home and relayed the conversation back with my husband, that I got really, really angry.

School Nurse

The next morning I phoned the school nurses, managed to actually speak to someone and lost my rag. I ended up bursting into tears and ranting about how I felt that all of the institutions in my daughters life had let her down.

Within 2.5 hours I had a school nurse sitting on my sofa. It’s a huge credit to them that they responded to my call as quickly as they did.

The school nurse spent 1.5 hours with me, asking all sorts of questions about whether my daughter had meconium when she was born, what her first experience of the potty was like, what her diet was like, etc. etc. By the end of our conversation she did say that I was clearly well read on the subject and that we appeared to have tried everything. She then informed me that my daughters condition is very serious and could lead to her having a colostomy bag and not being able to have children when she got older. She also explained that my daughter needs to be considered as disabled and needs to be treated, especially by school, as disabled. I got a bit hysterical when I explained this to my husband when he got home that evening from work.

The school nurse worked through a care plan for my daughter which involves her sitting on the toilet for 5 minutes every hour. She had to drink at least 650ml’s of water a day at school because dehydration can exacerbate constipation. We were to stop her milk in class immediately and she wasn’t allowed chocolate or bananas anymore. (I was only allowed to change our daughters school meals with the permission of the school nurse and I had to list all of the meals that our daughter could no longer have).

To her credit again, the school nurse went in to see the school the following day, took lots of leaflets from the eric.org website and highlighted to them just how serious my daughters condition is. She told them that they needed a stool for my daughter in the toilet and she needed regular support at school. She also advised that they implement a book that they used to record the times she had been to the toilet and the water she had drunk so that my husband and I were informed.

It took nearly 4 weeks to get the care plan implemented in school. By this time it was March 2016. I was advised by another friend to set up regular meetings with the head teacher, to keep the school accountable. We have had a meeting with the head teacher every month for the past 6 months and they seem to be upholding their end of the bargain. However, it was eye opening to me that they could have turned my daughter and her extra care down and we would have had to move her to another school! I didn’t realise they had a choice! (I have since found out that this isn’t true: http://www.eric.org.uk/Schools/Toilet_Training)

In April 2016 the school started to invite the “Physical Inclusion Development Officer” (PIDO) to our monthly meetings. We explained that our daughter had recently started having wee accidents again as well as poo accidents. The PIDO explained that it was likely that our daughter was impacted again and would need to have another “flush”. She recommended that our daughter have at least 16 sachets of movicol over a couple of days. It was another horrific experience and we were using everything we could possibly think of to get the movicol into our daughter, including making ice pops and jelly with it. Our daughter thought it was brilliant as she had a week off school AND jelly.

We had an appointment with the private paediatrician at the end of May 2016 and she said that because we’ve tried everything and our daughter still doesn’t seem to be able to use the toilet properly, she clearly has a deep seated fear of the toilet. She referred us to a child psychologist. We had our initial meeting with the psychologist which took 1.5 hours and at the end of the meeting Dr Ana hugged me and told me that I was finally with the right person and she would help us. She needed to send a letter to the medical insurance explaining the situation so that we could have authority for them to pay for future sessions.

A week later the insurance company turned down any extra funding because our daughter’s issue was “behavioural” not medical. We never heard from the child psychologist again. We were advised that if we wanted to go through with seeing a psychologist we would need to pay £3k in fee’s. My husband and I had many long conversations about what to do and agreed that we didn’t want our child to be used as a lab rat and that we would handle things ourselves. I still stand by this.

During the summer holidays in 2016  we went to see Lily at the Life Right centre, a hypnotherapist that another friend had suggested (Another person who I am deeply indebted too).

Y1 at school

On the way to school on the first day of Y1, September 2016, I had a chat with my daughter about her being old enough to understand that she needs to use the toilet now she was 6 years old and in Y1. We had nearly a month of her using the toilet and having no accidents at school. It was awesome although I’m now convinced she was partly withholding as she would have an accident as soon as she got home. School were putting her on the rainbow for every day that she didn’t have an accident and she was so pleased with herself! :-D.

We did have to start all over again with her new Y1 teacher, but they are far more understanding and sympathetic than her old YR teacher. This has really helped as they have made more of an effort to understand and to reward our daughter when she has done well with her toilet training.

In Y1 the staff categorically won’t change her because she’s “older now”, so she has to change herself. I have very mixed emotions about this. It can take her up to 45 minutes for her to change herself so she often misses lunchtime play because she has an accident after lunch.

Then she got sick in October 2016. And everything regressed. We had half term and she categorically refused to use the toilet. We made some progress after half term at school but I know she’s just exhausted with it all now.

This week she missed her Christmas play because she had an accident just before the play and managed to get poo over her outfit because there weren’t enough people to look after her whilst she changed herself. My poor husband had to sit through the play because I got called out just before it started, to change her, and he had to watch a play with all the other children, knowing that our child was missing out on ANOTHER key milestone in her life. I spent 15 minutes sobbing in reception, being judged my the receptionists and went home in the end.

Frustration

In YR in May our daughter started lying to the teaching assistant when the TA asks her if she’d had an accident. As a result of her lying to an adult about having an accident, she was immediately put on the “thunder cloud”. This did not sit right with me. Yes, she should not be lying to an adult, but it’s not as straight forward as that. Plus, I have no idea if they humiliate her in class by explaining to the rest of the class why she is on the “thundercloud”.

I mentioned it to the school nurse and asked if I was being a neurotic mother and she said absolutely not because in this situation we should all be focusing on the positive, never the negative.

In a recent meeting with the school in October 2016 the head mistress said that our daughter is using this experience as “attention” seeking and that she seems to enjoy the attention that she gets when she changes herself. I don’t doubt that my daughter is enjoying the extra attention as she’s a smart cookie, and this has also been a struggle at home as she loves telling people that she has a “medical condition”, even though we’ve tried not to talk about it in front of her. .

In Y1 it seems to be better. Although at home our daughter categorically refuses to accept when she’s had an accident and will scream at us and resort to violence if we even suggest changing her.

Support

We were advised by the paediatrician NOT to make a complaint about the Doctor who called me a neurotic mother because the paediatrician wrote a letter to the practice explaining the extent of my daughters encopresis which made it obvious that the Doctor had made a big mistake.

The practice also changed our daughters laxatives in April 2016 from Movicol to Laxido with no consultation. When our daughter had four nights of liquid poo accidents when she started taking laxido (it was horrific), the first night poo accidents she had had since she was 18 months old, I spoke to the Doctors and was told that they had switched to laxido because it was cheaper and they needed to document exactly what the impact of the Laxido was because it had the same ingredients as the Movicol.

The practice also refused to initially give my daughter movicol because we had it on a private prescription so I had to go through the whole rigmarole of obtaining the online log in details, only to be told they wouldn’t give it to our daughter without a telephone appointment, the first of which would be available in 10 days time. I had to phone the private paediatrcian again, to get her to intervene.

We are now seeing Lily at The Life Right Wellbeing centre and things seem to be getting better. Lily has supported lots of other children who have had encopresis before so we keeping everything crossed that things start to improve soon.

004

Updated in June 2017

(The Mum who wrote this article sent me this recent update)

In May 2017 our daughter was diagnosed with has an auto-immune disease that stems from eating gluten. In January 2017 we decided to take matters into our own hands, got in touch with a health coach and had our daughter on a very strict diet for three months. We were advised NOT to do this by the medical profession, but had we not done this, we wouldn’t have discovered that our daughter had this disease.

Once or twice we “slipped up” and that was when I realised that there was a direct link to the number of accidents and when our daughter ate gluten.

It took another 9 weeks for her to be diagnosed. She had to eat gluten for the whole 9 weeks, was in intense pain and it was horrific. I don’t think there is much worse than intentionally poisoning your child, giving them something that you know is going to cause them intense pain. She had two sets of blood tests in Basingstoke hospital and Southampton general and both came back to say that she has this auto-immune disease.

We were then referred to the “Paediatric Gastroenterology” department down in Southampton as there isn’t one in Basingstoke. It took us THREE YEARS to be referred to the right people. These are the people we should have seen from the very beginning.

They told us that our daughter should never have been on movicol. They put her on Senokot. It made a difference almost immediately. I am still processing that the 18 months of hell that we went through could have been avoided.

I am extremely grateful that we got a diagnosis of this disease for our daughter so early on in her life. There are over 200 different symptoms which is why it’s often so hard to diagnosis. I’ve heard all sorts of horror stories since about the complications that this disease can cause.

If I’ve learnt anything from this experience that I would like to share, it is that if your child has chronic constipation DEMAND a referral from your GP to your closest Paediatric Gastroenterology team, as they are really the only people who know what they are talking about.

Things we have learnt about encopresis

Chronic Constipation affects 1 in 100 children.

“Proper” Encopresis is incredibly rare.

The NHS won’t diagnose chronic constipation/encopresis until a child is at least 8 years old. If you want a diagnosis earlier, you need to get an x-ray privately.

Chocolate, Bananas and milk can all cause constipation.

Not only have we cut these out of our daughters diet but we have all found further research that suggest that all forms of dairy products can cause constipation, so we tried cutting out the majority of dairy out of our daughters diet and we try to substitute her food for a few months. However, after three months it wasn’t making much of a difference and it’s actually quite dangerous to cut food out of a child’s diet so our daughter now has limited dairy and goats milk.

The NHS have been pretty crap for us in this situation. Even the NHS website is disparaging about what encopresis and chronic constipation is. The fact that we had to get a private paediatrician to take us seriously, speaks volumes.

Tesco’s sell the cheapest pants. We spend the same on pants now as we did on nappies when our daughter was little. I used to clean them out but now we just bin the majority of them. Cleaning poo off of her other clothes at the end of each day is demoralising enough.

The eric.org website is a fantastic educational tool. It has lots of information and suggested strategies for helping to over come chronic constipation.

We cannot go anywhere without our changing bag. We have to carry supplies with us everywhere we go. It’s not a big thing but it is a thing.

Vanish carpet cleaner is the best thing to get poo out of the carpet.

Following a rigid plan of monitoring when and what our child eats, drinks, how much water she has in a day, how often she has sat on the toilet, the level of what her poo is like, remembering to sit her on the toilet within 15 minutes of every meal (often while she is refusing to sit on the toilet) and cleaning out clothes and pants filled with poo, on a daily basis has taken it’s toll. My husband and I thrive under a challenge but after nearly 2.5 years of battling to get the best support for our daughter and the daily stress of living with our daughters situation, we are exhausted.

Movicol sucks the water out of our child’s body, to redistribute it to the poo. This means that our daughter has to drink a LOT more water than other children. It’s taken 1.5 years for school to really understand this and I frequently have to remind them that she needs to drink more water at school.

One of the side effects of movicol is severe gas.

We don’t have holidays abroad unless it’s staying with friends, because of the change of water, diet and routine, access to laundry facilities and much as I am desperate for a holiday beside a swimming pool, it’s just not practical for us.

When your child has a chronic health condition which means they soil themselves between 5-12 times a day, at any given moment, it affects everything. Everything.

Even if you tell school about the medical reasons as to why your child is off school, you can still expect a snotty letter telling you that your child’s attendance is lower than required.

I dread our child getting sick. It takes a lot longer for her “poo” to recover. Once she is better, even if we reduce her movicol, it still takes a few weeks for things to “settle” down. This is even more challenging because we can’t let her wear pull up’s because this will undermine all of the progress we have made in the past year.

It has been an extremely stressful experience for our family. We’ve been told, time and again, that chronic constipation is more common in boys and one friend suggested that our daughter might be autistic. Nope, she’s in intense pain a lot of the time and no one knew.

Not being able to talk about it to people, because we don’t want to embarrass our daughter, has been tough. Really tough.

The few friends who know about our daughters situation, a couple have suggested that we move her to a different school. If only it was as straightforward as this. Our daughter loves school and has been through enough stress with her chronic constipation that we don’t want to move her to start all over again. It’s taken a while but it finally feels that school realise how serious her condition is. It would be nice if they had a little bit of sympathy and understanding, but you can’t have everything!

Final Thoughts

The paediatrician said that there is nothing as parents that we could have done to stop this. It’s a medical condition and no matter what we did, it still would have happened to our daughter.

Being an “chronic constipation parent” is a very lonely experience. Many of our friends don’t understand what we are dealing with, let alone strangers. We are lucky that we haven’t had many disparraging comments from “well meaning” people. It still hurts though. Most people have never even heard of chronic constipation or encopresis and therefore have no understanding at all.

In my experience, if you think your child has chronic constipation or even encopresis, be prepared to fight. I read online that a man in the US made his child sit with some poo on their nose for a whole day, as punishment for having continuous accidents. This made me weep. All of the children out there who have been mocked, beaten, ridiculed for having this condition because their loved ones didn’t understand or weren’t prepared to fight for them. I am determined that this doesn’t happen to my daughter, even if it has been one of the most stressful experiences of my life. This is also why I am sharing some of our story. If our experience can help another child so that they don’t have to go through what my daughter has, then that will be fantastic.

Our daughters condition is not resolved yet, by any means. It could take years and I’m terrified of the bullying that my daughter is likely to experience the older she gets.

My daughter doesn’t deserve to be treated the way that she might be. She didn’t ask for this.

I am going to continue to do what I can to try to improve everything for my daughter and I will continue to ensure that she gets the best level of care that she deserves.

Other Resources

http://childhoodsoiling.blogspot.co.uk/

http://www.chop.edu/conditions-diseases/encopresis

http://www.eric.org.uk/Schools/Toilet_Training

A really brilliant facebook group via this website: http://childhoodsoiling.blogspot.co.uk/

A great example of a Hampshire school’s toileting policy: http://los-infants.co.uk/wp-content/uploads/2014/03/Toileting-Policy-2013.pdf

http://www3.hants.gov.uk/supporting_children_with_medical_conditions_briefing_sheet__autumn_2015

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2 thoughts on “A NHM Readers experience: Encopresis (Severe constipation in young children)

  1. Rachel Reply

    Goodness me, I have nothing but the utmost sympathy for you, what a horrible situation compounded by the institutions that are there to help us!! I get how limiting it is for you and how exhausting, I honestly truly hope that things continue to get better for you and your family. Much love xxx

  2. Lindsey Reply

    I have recently had a similar experience with my 7 year old, although not as extreme as he does use the toilet, but was often struggling to make it on time and soiling. I had trouble with potty training and used the phrase “It is like he doesn’t realise he needs to go” when I went to a GP when he was 2. One of the first questions from the paediatrician when I got referred when he was aged 6 was “Is it as if he doesn’t realise that he needs to go? “I couldn’t believe it when Movicol resulted in solid stools when I was expecting the opposite. I feel terrible that he suffered for so long and that I felt frustrated when he could have had help sooner if I had been listened to.

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