desperate mum in need of help. 5yr old daughter with poo incontinence

[Amanda8434]

my daughter struggled with potty training and developed a fear of pooing. She used to pop in her nappy fine but hardly ever on a toilet. She held it in and it cause constipation and was out on laxatives. She is no longer constipated and hasn’t been for at least a year but she still will not poo. It is as if she now doesn’t know how to. She has 5-6 accidents a day and that is the only way the poo comes out.

I am in desperate need of help. She is being bullied at school and is so unhappy at home. She is constantly embarrassed and in distress.

it is making us all so sad and I have no idea how to help her!! I’m worried she’s it’s going to cause long term mental damage.

Please help

[mumbychoice]

I feel your pain. I know you don't want to hear it (and probably won't believe it, because I refused to), but i am guessing there is still a constipation issue. We struggled for 4.5 years just being told by the professionals: "she has constipation, give her laxatives, we'll see you in 6 months". Completely unhelpful! Our daughter is now 8.5 years old. This summer we have started to turn a corner. We properly faught with the consultants and wouldn't leave the room until they had given us some alternatives. In desperation to get rid of us the paediatric gastroenterologist finally said: "i can refer her to Bursledon House, but please leave now!"

We had never heard of the place, but it is associated with Southampton children's hospital. She was there for 3 weeks this summer. The kids go from Mondays to Fridays (i know, this seemed a huge step, but she loved every moment of it as they played all day and in term time they go to the hospital school). The lovely nurses and amazing Dr. Phillips work out what is going on, work out the right dose of laxatives, get her into a toileting routine and support her psychologically to work on her motivation. We still have a long way to go, but we (and most of all our daughter) can finally see the light at the end of the tunnel! It has changed our lives!

So if you live near Southampton, put all the pressure you can on whoever you are seeing to refer you to Bursledon House. We only waited for 3 months once we had the referal! I'm sure there must be similar places around the country, not sure how you'd find them though!

Good luck

[Amanda8434 in reply to mumbychoice]

thank you so much, it’s good to know there’s other people out there who are going through the same thing… we feel like we’re at breaking point.

We live Newcastle so can’t do the same as you but I may start putting pressure on. The laxatives just make her so unhappy and make the accidents worse to the point where she cries all day. As a mum that’s really hard to watch. I’ll consider starting them again after speaking to you though. Thank you for your message

[mumbychoice in reply to Amanda8434]

movicol was awful! The doctors only used Senna to clear and maintain, which is so much easier and she doesn't mind taking it.

[Weeze1984 in reply to mumbychoice]

my daughter was exactly the same. She is now being seen by the bladder and bowel specialist. I thought she wasn't constipated and was letting enough out but i was wrong. We did the disimpaction 4 sachets then6, then 8 then 10 a day. Which was horrendous but you have to get to a brown water stage. Then we halved the dose then every 3-4 lowered by 1 sachet. We are now at a maintenance dose of 2 sachets a day. She actually goes to the toilet and in a month have had 4 accidents mainly from not wiping. Which is absolutely amazing from what she was. She would literally hold her poo in all day and have dirty pants every time she went toilet. I had this for just over 2 and a half years so i feel your pain. Hope you get sorted

[Destiny2019]

it’s sooo hard, I understand this so well.

It sounds like your daughter is compacted (if the accidents are smudges).

My daughter is now 11 nearly 12 years and is still compacted she is in teen pull ups 24/7 and on 2 lots of meds… I don’t know how she still holds it 🤦‍♀️ She had this issue since she was 2/3 years old, we are in Cornwall and there is just no help!

The paediatrician and bladder and bowel people just check in every 6 months and we’re left to it !

She needs a child psychologist but there isn’t one in Cornwall apparently (helpful) 🤦‍♀️

my daughter has no control anymore the nerve endings don’t send signal to her brain to say she needs to go. But apparently it’s down to her to retrain her body. (It’s a very long road ).

If you have not yet been to the doctor please do so and tell them you think your daughter is compacted (they can feel it in her tummy ) and you would like to do a Disimpaction (keep her of school for this ) it will take up to two-three weeks depending how compacted she is.

Hope this helps and fingers crossed the reset works for your daughter xxx

[Amanda8434 in reply to Destiny2019]

hi, thanks for your reply. She is in the care of the hospital, but again we only see them every 5 months. We have done disimpaction with no help, her tummy is very soft and she’s in no pain. The poos range from smudges to full poos. I may consider laxatives again though, I just need to prepare myself.

Thanks for your help xx

[Circe78]

It is so hard, and feels so lonely, but seems to be such a common problem for lots of children. My youngest is now 5 and can now poo successfully on the toilet but it took about a year and a half to get there. He would only poo in a nappy - had total fear of doing it on the toilet.

I got a referral to a Bowel & continence specialist nurse, which was helpful, especially in terms of support. Main things that helped us was using a toilet seat with a step (a bit like a commode) so his legs were a bit higher and he felt safer, & then very gradually cutting holes in the nappy so he ended up with just a ‘belt’. It was very slow process getting him used to sitting in stages. So time consuming & frustrating, but hope it helps know that we got there in the end, even though at times it felt like we never would.

[Lambtrack]

Just sending masses of empathy your way - it’s such a tough journey isn’t it. Our daughter is nearly six, suffered with similar bowl issues for at least a year; I was so convinced she wasn’t constipated as she did still poo sometimes and the GP had checked her tummy and said it was soft; however we then did the ERIC online webinar which was brilliant and I realised she probably was constipated after all. So we did a disimpaction, which I was dreading but it actually only took a long weekend - she was off school on the Fri to Wed and it wasn’t as bad as I was expecting. She’s now on a maintenance dose of movicol and seems to have lost the fear of pooing, and the bowel is gradually/hopefully fixing itself/brain getting used to those signals again. As others say, it’s a slow process but there IS a light at the end of the tunnel. Keep going and she will get there. Definitely worth speaking to ERIC helpline or doing one of their webinars. Sending you and your daughter loads of encouragement and energy!!! X

[Anaid2Rose]

I really feel for your daughter as her story is very similar to daughter`s struggle with poo. Our little one became a withholder since she passed from soft foods to solids. The start of school was very bumpy and we found school staff quire unhappy and unwilling to meet her needs. After several years of struggle with constant issues with the school trying to blame the pooing issue on us they even went to social services because we had to keep her home at times when they knew she was on laxatives as prescribed by our doctor. I had to get a letter from our GP a paid service to provide to the school, yet they have been signing up my child without "needing my permission apparently" with an array of professionals that besides advice did not have much else to offer. They apparently felt unappreciated because I did not want to sit every day at the end of the school day to be told how many times she needed changing that day and apparently I was not panicking enough for their liking trying to imply that I was in denial. Their goal is to have her diagnosed with something since they insist that her speech is delayed, and money will be allocated as a result.

A bit out of the blue things have improved and it looks like she will recover as her appetite increased and diversified as a result.

This is what is working for us. Removing milk cheese etc from her diet as much as we could she will have the occasional ice-cream as it felt cruel to deny her.

If school are unreasonable - ask your doctor to write a letter that contains a diagnosis like incontinence etc and also what she will be prescribed - laxatives.

Best of luck I have been stressed for so long now that I had very little hope if any that things will change I found professionals quite limited in their advice advice that is available on ERIC.

We also taught our little one to change herself so school now can`t complain as much.

[14crosstitch14]

Watch the time for when she has an accident. Is it meal times or just ramdom. Do a diary for the doctor and then try putting in a routine for the toilet. Get some dolls/bears make some poo with paper make a game useing potty/ toy potty and show her its natural and that its not scary. Maybe lights lowered make it comfortable we have fidget toys just for toilet they go no were else. Also music can relax them. As for school 1s she's in a routine, certain times of day should get better slowly. With teachers prompting to use the toilet.