AIBU to consider home schooling over my son's ongoing bowel issues?

[HelpNeededASAP123]

Reaching out in utter desperation and despair.

My son, 11, has had this issue for as long as I can remember. I’ve done ERIC and been to the GP on multiple occasions.

He’s done disimpaction more times than I can remember. He gets up to 8 sachets of movicol and in the recent times, I’ve also given him lactulose so he’s definitely disimpacted. Then I do, as ERIC suggests, and reduce him to half dose - 4 sachets. He does timed toilet sits in the morning and evening. I recently reduced it to 2 sachets and this has made no difference. He’s miserable.

He goes everyday, but it is never firm ‘sausage’ poo. It is 99% loose poos, multiple times a day. The other 1% it is rabbit droppings. For the last two years we cannot go anywhere, as he cannot walk without leaking. He is fully aware of the leaking, it doesn’t happen without him knowing. So he has to constantly waddle to the toilet. This means we cannot do beach days, parks, forests as he has to be close to a toilet. He’s meant to be going to secondary school in September and I think I might just home school him as this issue is so bad and he will be bullied for it.

Has anybody found a solution to this?

As the OP has explained (and as you could have read, had you been less keen to gallop in and criticise) it can actually be quite difficult to find a paediatric gastroenterologist, even privately.

My DS has had constipation problems all his life. He has Ehlers Danloss syndrome which impacts on his digestive transit. We didn’t find Laxido very good for him but sodium picosulphate has changed his life. All the best with getting this sorted out.

Could he not wear some kind of nappy? I’d imagine there are discreet ones on sale now so it wouldn’t be obvious. If not for school, then at least for days out so he can have some kind of life?

“Quite difficult”

but she’s close to London. 15 mins of googling would find you one

Actually I’ve just looked… make that 1
Minute of googling “paediatric gastro london”

This. Poor boy. I would not send him to school in his current condition until it’s diagnosed and stabilised. He can then join. If he joins too early it will likely ruin the positive social aspect of school. Kids are merciless and will not forget even if his condition improves

https://www.hcahealthcare.co.uk/finder/stepconsultantprofile/ahmed-kadir

If you’re financially able to get a private appointment with a specialist consultant and try to get on the road to having it resolved for your child before yr7. I believe you’ll both be much happier this route.

My sister in law recommended a nurse who specialises in this area to our family for this issue. Her Instagram is pooandtheloo. I had a £200 online consultation with her for my child. Treatment did involve disimpaction which you have already done but the way she approached it and communicated with me whilst doing the disimpaction was excellent. She was infinitely better than any help we have had on the NHS. My child has needed a couple more disimpactions since then but much more minor and our situation has improved so dramatically since before working with her. Wishing you all the best as it is so so hard but I hope you get there.

We have been there.

1. Have they tested for Coeliac disease? Initially this is a blood test that your GP can arrange
2. Find out if there is a local continence clinic - though they were not that helpful beyond suggesting everything we had already tried, it was a hoop to jump through!
3. Request a referral to a specialist citing significant impact on daily living and education - talk about the impact of soiling on an 11yr old and the looming move to secondary - spell it out for them
4. Transit studies can be done to see how well the bowel is functioning - at different times we had a "too fast" bowel then a "too slow" bowel and everything in between. At one point they prescribed both laxatives and imodium! This can determine if there is still constipation...
5. There are different types of laxatives - some work by drawing water into the bowel eg Movicol, others work by stimulating the bowel wall to contract, pushing stools through eg sodium picosulfate or senna. We found a combination of both worked best.
6. We were told by consultants that it was take at least as long as the problem had been there to fix it.... a daunting prospect, but it is generally fixable with the right help, support and treatment

This should have been referred to a specialist ages ago. Either pay for a private consultant appointment at your local private hospital or clinic, or go and stand at your GP surgery and refuse to leave until they write a referral letter.

Your poor child.

I was wondering about Hirsprungs as well. We’ve had a few teenagers at work have a late diagnosis.

You/school need to get the school nurse team involved to start a Health Care Plan. It will need to have provisions laid out for your son such as:

• Access to a private toilet
• Toilet pass and instructions to all staff that your son must be allowed to leave with no questions
• In the event of a cover teacher saying ‘no’ to allowing him to leave he must be taught to just leave and this is okay because a key adult will speak to cover teacher to remove any misappplied consequences
• A locker/safe place for changes of clothes at school
• Rehearsed routine for changing and designated place for soiled clothing with agreed actions for sending clothing home

Potentially, he may need to wear pull up type pants/pads to manage incontinence in the short term.

Personally, I would do the Autoimmune protocol diet with him and reintroduce foods slowly keeping a diary of changes to his gut.

It is so so tough to be going through this. I am sure it’s utterly exhausting but there are things that can be done to make accommodations at school.

We saw this doctor for chronic constipation and spoiling and he was good.
I would suggest he has not been fully disimpacted unfortunately, we had to do several weeks at 12 sachets to get there with a much younger child. We then had an x ray to confirm. It’s horrendous, I really hope you can get this sorted for him.

Several weeks!!? How did you know you had to continue for so long, my son ends up with very runny poo on 12 sachets, he can’t even leave the house.

We had this and we just stopped. Stopped all treatment, the doctor said this was beyond his medical knowledge and maybe he was over medicated so we stopped. No more ERIC. No more disimpaction, no more Laxido and Pico.

I highly recommend it, my son is 10 and it came on 2 years ago from my ex moving into his new house (with mistress) and having a separate toilet / shower. Kick started withholding and alot of nerves about poo.

It's been a month but soiling has almost gone and we are back to the old days.

I recommend trying it, good luck, it was living in hell those dark times.

Apologies if this has already been mentioned but has he been tested for coeliac disease?

ERIC sell lined underwear, only up to age 11 size though but it was a godsend at a school.

How long was he constipated for?

I have got that booked in, because of his age in needs to be done at hospital and the GP can’t perform it.

He absolutely will not do this or any other type of underwear or he remotely considers a nappy or not age appropriate.

He’s also aware of the sensation of the loose poo / leakage so there’s no way he’d just allow it to seep into pants / lined pants.

November 2024 - February 2026.

Daily soiling, so much poo, it consumed everything. Now a couple of minor accidents in the 2 months but that is it.

It looks just like normal underwear, it's thicker material with a waterproof middle but looks just like pants. My youngest has worn them in error as he thought they were just pants.

https://shop.eric.org.uk/products/p-s-boys-protective-pants-for-soiling-navy