Cannot manage any longer

[Gwigs34]

Is anyone else just in a cycle of sheer frustration and desperation. I can't do this any longer! Going through disimpaction is all very well and good but when the behaviour of withholding just returns instantly after every disimpaction then what are we supposed to do???

My daughter just refuses to poo naturally. We can go for weeks on end of screaming and refusal and the most horrific behaviour before a normal natural perfectly formed and consistency poo comes and all is good for a few days. Then the cycle repeats again. We've disimpacted over and over again. We get to a decent consistency and the withholding behaviour just returns.

I'm at my wits end.

[Alicass]

I can empathise with you. My son is not a withholder but has been doubly incontinent for 6 years. It's been a nightmare. However, we are seeing light at the end of the tunnel.

Have you got a toilet plan in place? Is your daughter on a maintenance dose of her medication?

It's a frustrating, stressful and very emotional medical issue to go through. We've had lots of downs, frustration and anger mainly due to my son's Paediatrician. 😡

[Robinia]

Can I ask what the maintenance dose you are using is? In my son’s case his maintenance dose was 12 sachets and very gradually now managed to drop it down to 8 sachets. He’s also on high dose Senna and bisocodyl to help push the poo out. He does multiple sits on the loo each day and poo comes out 3/5 times a day. Might sound full on but compared with how things were (incontinent, chronic pain, violent, unable to poo on the loo, chronic soiling, violent aggressive behaviour) he’s now angelic and completely clean!

[Caligirl38]

I can definitely empathize with your cycle of frustration - we’ve been struggling with soiling for almost a year with my son - It really does take time to improve. Definitely the hardest thing I’ve had to deal with as a parent! I don’t really have any tips because we are still figuring it out too, just wanted you to know that you’re not alone in feeling frustrated!

[clmls123]

i dont know what age she is but have you thought about seeking some psychological support/advice for her & also looking at dietary advice? Having gone through it with my doubly incontinent older daughter & now my younger daughter with urinary incontinence it does take its toll on all involved & i think it can be very traumatic for some kids. Having had a childhood myself of my constipation being "managed" after a hospital admission age 3 and having since then a lifetime of disordered bowel, i do think childrens bodies forget what "normal" is after sustained and repeated bowel interventions. It took 'til age 6 with my daughter for a nurse to think outside the box & suggest a solution (other than the whole movicol etc malarkey ) which ultimately worked & she was continent of bowel & bladder by age 8, after never having normal bowel movements since we started potty training. Do also search up massage for constipation, i dont think this is advised enough.

[Barbiecar in reply to clmls123]

Hi clmls123, I’m having a bad spell of withholding with my 6yr old daughter having gone through 4yrs of Movicol and pico sulfato intervention. Can you tell us what the alternative solution was that your nurse suggested? Will look up the massage suggestion. Thanks for your post.

[clmls123 in reply to Barbiecar]

Hi Barbiecar, the nurse actually suggested suppositories. these really wont be an option for everyone- for obvious reasons putting them in can be really challenging for parent and child (it took a lot of bribery with ice cream for us!) but for us it did work...perhaps it works best if you have a child who is withholding a "normal" formed poo in the lower part of the bowel ???this may be TMI but both my kids seem to do massive poos but normal consistency...the continence nurse i've seen for my second daughter always said thats a sign of constipation but the consistency has always been normal so i never felt it needs "softening"as such just a willingness not to withhold. best of luck.

[Barbiecar in reply to clmls123]

Hi and thank you. To me that seems logical but our paediatrician refuses to change her strategy and we can’t get them over the counter. Very frustrating but I’ll keep plugging away. It’s good to share these things. Thank you for replying 👍

[Gwigs34 in reply to Barbiecar]

You can get glycerin suppositories over the counter ... just don't say they're for a toddler. Xx

[Barbiecar in reply to Gwigs34]

Ah thank you. Will look into it.

[Gwigs34 in reply to Barbiecar]

Our health visitor suggested them. 2g is suitable for children you can buy them over the counter at a pharmacy. Xx

[Skyfullofstars1]

Hi, just wanted to say I hear you!! I don’t know how old your child is but I think as there understanding gets better of how the body works, gradually things get better. When you say clear out is this at home or in hospital? The hospital clear out was the beginning of the end for us. We had two years of this cycle you speak of and it was absolute hell. The things we tried

Extra fluids

Few different medications

Massage

Yoga

Hi fiber foods

Sitting on the toilet after meals

Keeping a diary

Book - Liam poos on the toilet, everyone poos, have you done your poo today. Also how the body works books

The poo land app

Blowing bubbles while on the loo or feathers or anything really 😂

We are a year and a half after the hospital clear out and on a maintenance dose of 2 movicol and 10mls docusate daily and still sit on the loo after meals. She’s now 6 and has clean pants and poos everyday. Hang in there... you will get there. My daughter said to me just last week ‘ I wish I never held my poos in so I wouldn’t have to take medication’

The bowel gets stretched and the signal doesn’t get sent that they need. It takes time to get back to normal.

[Gwigs34]

Thank you so much all. She is 3 and a half. We have been hospitalised twice when she was younger and disimpacted at home recently. Shes on 2 sachets a day, her poo is a great consistency its definietly not overflow. She has bum cheeks of steel 😂 shes done probably 20 little soft poos in the potty today, a few times dirty knickers so I took them off in the end. So today wasn't horrendous.

She goes to the loo nicely at nursery very minimal if any accidents at all ... she sneaks off and withholds but they tell her straight away to move it and she does. She knows at home she can kick and scream and refuse but she wouldn't dare at nursery. This is how I'm sure it's a psychological issue and not impaction. Because I know she can do it. It's just ingrained in her to withhold straight away for me or daddy.

We are getting there with extra fluids (never been a good drinker) and more fibre. She eats nicely and has good stuff. She loves the poo land app although she just likes the pumpy noise ha ha. She likes to sing on the toilet.

I think she needs a stimulant laxative to make her push out a decent sized poo. She can do it .. she did a "banana poo" just last week her words ha ha. But it takes weeks to get one of those.

Thanks so much for your support. The bad days are so overwhelming xx

[Skyfullofstars1 in reply to Gwigs34]

They really are!! So glad today was a better day for you. She’s still really young. Sound just like my daughter but cheeks of steel 😂

It’s like that is now the automatic reaction when her bowel signals that she needs a poo... now it’s quick hold it in. So frustrating. Maybe some sort of reward chart might encourage her. I must have spend about £500 on mashums 🙈 every day if clean pants you get a mashum.

I had to keep the poo a bit runny for about 6 months - this was because her bowel was 3 and a half time the size so this was to let it shrink. That’s great she’s happy to sit in the toilet because it’s so important for them to sit and relax on the loo after meals. Hang in there ❤️ your not alone... and you will get there xx

[Okwhat]

Omg this could have been writing this post ,I'm at my wits end googling things like can you die if you don't poo?My son is 12 and started secondary school ,I think he needs psychological help as it really is a constant circle and he doesn't understand himself why he is holding it in.