I can’t do this anymore!

[Bambie83]

It will be approaching the third Christmas since we discovered my daughter was impacted. I didn’t know anything about it and now I’ve had to become more knowledgeable than the GPS because no one seemed to know about it.

She’s turning 6 in March and though we had small periods of rest bite here and there, the situation doesn’t seem to get any better and its beginning to have a effect on all of us.

My daughter now has a real stigma over the toilet and though you’d think she be used to regular toilet sits after meals by now she sometimes fights tooth and nail not to go. It massively affects her behaviour but refuses to listen to us or her body when she needs the poo.

It’s completely draining for my husband and I and I’m almost certain my nearly three year old is showing absolutely no interest in toilet training because her sister making it look like a negative experience (I’m not forcing her at all she’ll do it when she’s ready).

I’ve just found some pairs of soiled pants hidden behind the door in her bedroom and I’m crying with frustration.

Should I disimpact again? Doctors didn’t seem to think she was constipated anymore but hey what do they know!

Or is it possibly more physiological now should we be looking for a therapist?

Help! I can’t do this any more…

[TippyGreen]

I really feel for you. I don’t have any advice but I hope that by replying it will keep you r post boosted so someone with more knowledge will. I would say that I’d be looking for external / private advice at this point. I do so hope it feels better for you and your daughter

[OlivesYou]

It’s okay to fall apart every once in a while. We had this w our son. Keep him on movicol mixed w drink and for my son, it’s been 3 years EVERY single day of laxative. But it COMPLETELY WORKS! It will work you must keep up. You find a dose that keeps the poo super soft and keep up w it. Don’t stop. You’ll know when it’s time to stop. You’ll know. She’ll start to recognize her body too. Can’t hold soft poo! You’ve got this!! 💕

[Robinia]

PM me if you want to talk. I know how hard it is. I really do. My son was constipated for years and years and the process of getting it under control has been very painful and at times pushed me right to the edge. The key is disimpaction which can take months if the constipation is severe. Followed by finding the right maintenance regime. My son’s maintenance regime is 12 sachets of movicol a day. Which I know is unusual and high. But I’ve learned the hard way, do what works.

[Hidden]

That sounds so tough. Anniversaries of these experiences are particularly difficult psychologically. As are big annual events like Christmas, which are high stress for parents and also have the perceived pressure of needing to be wonderful and positive.

Just reading that through, first thoughts are that a psychologist and/or family therapist who can offer something like sneaky poo might be really useful. It can be really helpful in taking any (self)blame and shame away. Family therapy is the other main evidence based psychological therapy other than behavioural work iirc.

[Bambie83]

Thank you all for replying.

Just to add she is on a maintenance dose of one sachet of Laxido but is an amazingly stubborn child. She’s got it into her head that going to the loo is boring and not matter how many times we tell her even the Queen has to go to the toilet she just thinks it a waste of time.

Also, she blows water through a straw on the loo and it comes out most of the time really quickly. So it’s not like she’s sitting there long at all.

My worry is the poor thing has had this problem for two years and at that age I’m not she can really remember a time when she didn’t have mummy and daddy telling her to go to the toilet.

I’m looking into seeing if a bit of therapy could help and seriously considering a disimpaction over Christmas just to make sure there’s no blockage. But it’s so painful some days - it’s like she doesn’t care and doesn’t want to get better.

[Hidden in reply to Bambie83]

I absolutely know it can feel like they don’t care about getting better, but it’s probably more accurate that they have no confidence in themselves to get better. Also look up self sabotaging behaviour (used to be know as self handicapping behaviour) - when we believe we can’t do something we don’t try because it’s easier for our psyche to not master something because we didn’t make an effort, rather than try our best and still not manage it. That’s completely subconscious btw.

It’s worth exploring your own thoughts too. Do you worry she’ll ever get it? That’s another thing that therapy can help with, a space to explore your own concerns.

Fwiw my daughter is a month older than yours and it’s only been in the last few weeks that something has clicked and she’s got it. It’s still a bit precarious but there definitely is hope. We had a real confidence dip recently and a more exciting reward scheme helped her initially try again, but I doubt it was the thing that has caused the overall change. That’s almost certainly been developmental. As the paediatrician said to us on Friday, 5 going on to 6 is still really little, bless them.

[Bambie83 in reply to Hidden]

Oh I know I could handle it better… I just sometime feel so broken! I could really do with some coping mechanisms for all of us really.

The health visitor said we should get the doctor to refer us to a paediatrician but he refused as he said they wouldn’t do anything more for us…

[Hidden in reply to Bambie83]

We were referred to general paediatrics in a similar, if anything less entrenched situation to you. We are being discharged because she’s (fingers crossed) turned that corner but I think they would have kept up if she hadn’t. It is quite postcode dependent but I would ask again. If anything you need specialist advice so you’re not the one holding all the decisions, which is incredibly stressful.

We didn’t get accepted by the local bladder and bowel service though as they’re only taking kids with confirmed diagnoses of neurodiversity (ours is on wait list for ADHD assessment which apparently is not enough). But other areas in the country are accepting all kids with long term soiling issues, so that could be worth asking about?

It’s so hard, I know the advice is all about staying calm but it’s so hard to do when you’re feeling hopeless and we’re only human. I found that my frustrations would mainly come out more around diet issues, ie is she drinking enough, eating enough fibre etc.

I have the details of the psychologist we saw privately (via zoom) for a few sessions, it was mainly supporting me to keep going and tweak the behavioural stuff but it was helpful. I don’t think she so got the possible neurodiversity so much or if she does family stuff, but she’d certainly include your husband if you both wanted to see her together.

[Purplestar12]

So sorry that you are at your wits end, I don't blame you, it sounds like it has been so exhausting and frustrating.

Follow your instinct. If you think she could do with a disimpaction then I would say do it. I would also encourage you to look down the route of therapy for her. A lot of toileting issues can stem from negative relationships with toilets and perhaps something like CBT will help her.

My sons constipation is a result of years of not wanting to use the loos in schools because they would get so filthy, so he got so used to holding it that it became habitual all day everyday. For now he has use of the disabled, private loo in school but we know that can't be a long term solution.

I really hope that you manage to find something that helps you and your daughter, I have everything crossed for you

[Bambie83 in reply to Purplestar12]

Thanks for this - I woke up this morning with a clear head and I'm thinking out I will start upping her laxido dose as we get closer to the holiday and see if that makes a difference.

I reckon it's all about routine for her. She prefers doing her toilet routine at home. So if you haven't managed one in the morning and you go out, she'll hold it in until she gets back. I'd hate to think that we've managed to build up a negative association with the toilet, but I think that's what's happened.

😢

[Purplestar12 in reply to Bambie83]

It's not your fault that there are negative associations, these things can happen with anything when it comes to kids! I remember being in the infants, and a couple times having a wee accident in front of everyone at lunch, because even though we were all ushered to the loos on the way to lunch, I was scared that they would leave me behind so I wouldn't go... Lo and behold... I know its not quite the same, but a fear and apprehension none the less, that could have seen me go down a more serious path.

My son won't entertain a public loo now, unless it's for a wee, so going out for a full day can be a bit nerve wracking.

Yes, sounds like your little one thrives on a routine and I wonder if you have had any joy with getting to the bottom of why she doesn't like to go anywhere else other than home? When we found out it was the state of the toilets and perceived lack of privacy for my son, the school has managed to accommodate him, perhaps the same could be done for your daughter?

[Bambie83 in reply to Purplestar12]

I think she doesn’t like doing it in front of other people - even other members of the family like my mum. We had her around and at the end of her stay she whispered to me when nanny was going… when she eventually left she went and happily did a poo, like she was waiting her some privacy.

I also think a lot of the time she doesn’t like to stop what’s she’s doing to go when she needs to.

[Skyfullofstars1]

Hi, just read your post and didn’t want to read and not reply. We had the same situation from age 2.5 my daughter was constipated, would withhold. And ofcourse with that. Pain, toilet refusal, bad behaviour, soils pants sometimes 20 a day. Many hospitals trips. Have you ever been offered the clear out done in hospital? That was our turning point. Now she’s 7 and although she’s still on medication and if she doesn’t poo one day we are on high alert 😂 she really has come along way. It really is such a stressful time for everyone. I also looking into therapy and couldn’t find any child therapy near me. Luckily fir us this was around the time we were offered to go into hospital for the clear out. That was coming up for 3 years ago on the 10th December we went in for a week ( got home at night so she could crap all over the house 🙈) We would do kids yogo together to get things moving before toilet sits. Or certainly foods i had learned got her moving. We still have a box of toys in the bathroom. At one point I pads could only be used in the bath room. We have a few books as well. Liam poos was a good one but I’m sure there more by now. I wish you all the best! All you can do is never give up. Keep trying everything you can 💗

[Bambie83 in reply to Skyfullofstars1]

No we've never been offered a clear out at the hospital - though I think from doing a few disimpactions at home that she's probably not that constipated this time. I've found the GP's really unhelpful to be honest. They feel her tummy and say there is no blockage and that's about it.

I reckon a lot of it is any change in routine at all (it's definitely worse during the holidays).

It's exhausting!

[Skyfullofstars1 in reply to Bambie83]

I found that too. Also when they are anxious about something. We had a terrible experience on a plane going on holiday and it was down to her being nervous. Thing is once they have been so blocked the bowel is stretch. I demanded a scan and reluctantly they did it and it showed her bowel was three time large that it should be. Do you do laxido every day? It take a long time for the bowel to shrink back to size and retrain. Have to try the pooland app or any of the books? It really does take over your life doesn’t it. Big hugs 💗

[Bambie83 in reply to Skyfullofstars1]

It stretched that much?!? Poor thing! I was told they would have to be constipation free for a year to allow the bowel to go back to a normal size. We we’re so close a few months ago, soiled underwear had gone down to once in a while and then as soon as we do something unusual like go away we’re back to dirty pants.

I might try the pooland app.

[Skyfullofstars1 in reply to Bambie83]

Yeah I was quite surprised but it gave me more understanding of what was going on in there. It’s like retraining their brain to listen to their body. And after they have ignored the signal that they need for so long it just takes time. We left the hospital on 4 movicol a day and 3x 5ml docusate. I took a really great consultant to finally get it right for us. 3 years later we have very slowly reduced to 2 movicol ( sometimes just 1) and no docusate anymore. We now only sit on the loo after tea for 10 mins unless she has went already herself . We did sit 3 times a day for a long time. Even in p1 the school would let her go after lunch to the nursery toilets (they were the correct height for her to have her feet on the floor ) to sit and they would message me to let me know if she got or not. So we had great support from the school too.

[Rose0920]

I wish u all the best. As I am at the start of this process with my nearly 3 year old son. I'm at the beginning and feel like I'm at my wits end. I really hope you all find something that works. All the best x

[14crosstitch14]

Explain to her, their'll be no trips out till she starts going toilet and no friends will want to come play. She needs to listen to her body as we can not poo for her. My step daughter is completly the same, my nearly 3 year old is doing the same refuseing to use toilet. Don't give in if she knows she needs toilet keep pushing and keep going pushing, flush her with lots of fluids and sweet corn watch for the signs she needs to go like wiggling and straining her bum. Getting her exerciseing too.

[14crosstitch14]

I was struggling too, especially since sd is 50/50 at home so no proper routine really. We flush pkenty fluids and high fibre diet now. She alsobhas a fidget toy for distraction. Poo story we used at the start of all this, and getting her to do more exercise will help. As for your younger daughter, same with mine she's good on week her sisters not here and refuses more when her sister is here all week. Very frustrateing. We have her walking as we don't drive so exercise really works with her and a regular toilet routine also helps, with alexa. Getting her to relax and sitting properly on toilet, music also helps so she's distracted and were nagging less.