Misinformation??

[KAW111]

I recently asked for a second opinion from pediatricians - a particular Dr was recommended and he has agreed to do it.

However, in the interim he has advised:

.....would like to reassure you however, that in the intervening time, stool retention will not cause long-term damage (although stretching occurs with faecal loading, this will settle as X improves).

This is in response to my concerns raised about my son being impacted and having to wait 6 weeks to be seen after an MRI detected 'significant amount of stool' in his bowel.

The above advice sits uncomfortably with me, as I have learned through Eric and other resources long term damage can be caused by sustained impaction / constipation.

(Currently on daily poo - BSC 4 - on 2 sachets Movicol, soiling decreased significantly but increase in day time wetting when my son laughs)

[Bambie83]

Once you found out about the blockage from the MRI did they instruct you disimpact anyway?

[KAW111 in reply to Bambie83]

No. Just to wait until the planned appt to discuss. Which is why I held off, but in the meantime my son continues to wet and soil (although soiling has reduced). I feel bad for him if these things could be remedied by disimpaction; and I worry about long term damage to his bowel but equally last time we did it the whole process was very traumatic for him, with a hospital admission after nearly 2 weeks on max dose of laxatives and abdominal pain. I don't want to put him through it again unless absolutely necessary, with some medical supervision and a planned ultrasound in the very least to ensure his bowel is completely clear.

[Bambie83 in reply to KAW111]

Yes that would concern me to, how long are they planning to leave you like this?

Personally I would disimpact anyway, however, my daughter has never had a traumatic time with it and it certainly doesn't cause her any pain.

Perhaps contact them again to ask what you do in the meantime and tell them your worries.

[KAW111 in reply to Bambie83]

I have - and what I quoted in my post was the response! However I do not feel reassured at all, just completely conflicted.

[Bambie83 in reply to KAW111]

I really feel for you.

Perhaps, its worth increasing the sachets for a bit and if it starts to give discomfort then ease off.

At the moment he's on what I would call a fairly low maintenance dose, which won't be doing anything to clear the blockage and in turn might make the soiling worse. Perhaps up it to 4 a day and go from there.

[Roxyrox in reply to Bambie83]

I think this is good advice .... 2 is low, so try 4 in the interim. I went from 2 to 4 sachets with my son and definitely noticed a difference in the short term. Longer term is a different story!!!

[Aethawk]

I would say you need to increase meds, as bladder issues are generally caused by constipation. Ring ERIC and get things moving. Severe constipation can cause terrible problems. Have you looked on fb at movicol mummies?

[Teddy500]

Hi there, I agree with the other posts, if you've had confirmation that the MRI shows constipation then I'd push to get on with the disimpaction but you'll need a lot of Movicol and a GP (or equivalent to support you and prescribe). Disimpaction is very safe and something you can get on with at home whilst waiting for appointments. We often have to wait ages and I try to do everything I can at home whilst waiting so when I eventually get to the next appointment I can say 'I've already tried / done all that'. I also found my own research into high fibre foods, foods to avoid, recommended fluid intake, excercises to help bowel movements, tummy massage and so on have all helped my son more than any pediatrician ever has. Good luck and best wishes 🌈

[KAW111 in reply to Teddy500]

Yes the most useful advice I have picked up is through ERIC, online info and forums. I am very grateful, eternally disappointed by health services. I have fought such a battle to access help only to discover the very services that should be in the know are less than helpful.

I totally agree with all the advice shared here and really appreciate everyone's time to reply to me. It has given me the confidence to just take action again myself. I have contacted our gp requesting a large batch of Movicol and have prepared myself for interrogation again. I think I am most wary about my so losing confidence and motivation to continue developing good toileting habits. He is 9 and finally after 7 years beginning to show more control over his bowel movements. I feel bad for him losing that if only for a few weeks while we disimpact. But equally, the wetting is such an undignified experience and he understandably worries about what other children might say if they saw. He tells me he will try not to laugh as that is the only time it happens

😥

[Teddy500 in reply to KAW111]

Hi, hope you get the help your son needs, it took us 2 years to finally get a urology appointment. There are also specialist bowel and bladder clinics/nurses you can request a referral for which are like the NHS version of ERIC. After our disimpaction these are the things I've found helped my son....weetabix (with Linwoods seeds), fig rolls, Ella's kitchen prune puree (on bread before adding butter and jam to make jam sandwiches daily for school with wholemeal bread), Chicory root inulin powder and syrup, Nairns oatcakes (instead of crackers), minimum of 1500ml of water each day, 10 minutes of aerobic excercises morning and night, 15 min toilet sits after breakfast and excercises each morning, sorry if none of this is new information for you, but just in case I thought I'd send it 🙂

[KAW111 in reply to Teddy500]

No I really appreciate it. I bought some chicory inulin syrup as you mentioned it in another post; and sneaking in flax when I can, along with a daily microbiotic powder. He will drink 1000-14000ml now which is a massive improvement from 4 months ago. And we got a trampoline late last year which he is finally taken to. My son is autistic, with strong demand avoidance and SPD, so it's a daily challenge tackling all the elements that make for healthy bowel movements. Unfortunately our local bladder and bowel service has been disappointing.