Daughter still continues to be completely impacted and constant pain

[Pink12345678]

Hi there I’ve not been on here a while but need some help! I’m so worried about my 9 year old for nearly a year now she’s been suffering in pain with constipation she had the NG tube fitted back in July yet even though doctors told me it was successful I wasn’t so sure, I have ended up paying privately for a MRI which shows she is still badly impacted!! She’s on Senna, movicol, picolax she does go but feels loads more to come out and she hasn’t been able to be her typical happy physical self for a year now! We are currently waiting for her to have a colonoscopy and laparoscopy but other than this she’s had everything else going! She has passed blood but I’ve been told this is normal .

I’m hoping there’s someone out there that can advice me

[Robinia]

How much movicol is she on? Have you tried a movicol disimpaction recently? Is she being reviewed regularly by a health professional?

My son is constantly constipated and constantly soiling. He has poo stuck in his rectum all the time.

Currently he’s taking movicol (6 per day) and gradually increasing using trans anal balloon irrigation. He’s also doing movicol disimpaction every school holiday and I’m also going to try from this week end upping his movicol every week end so he takes 8 friday, 10 Saturday and 12 Sunday every week end.

I’m desperate for him to stop feeling constipated as it causes him so much pain and discomfort.

But things are tons better than they were for him. Movicol previously wasn’t working - just causing build up of wind so now he’s not blown up like a balloon that’s helped loads.

He’s had 6 plus lots of klean prep (although they couldn’t get the NG tube down him despite trying 4 times and sedating him so he’s had to drink it every time😬).

I guess I’m trying to say for the ones who really struggle - disimpaction becomes something you have to do countless times. Also colonoscopy and laparoscopy are investigative so the most important thing is what the regime is following these tests and what you are doing now (as you may be waiting a while).

My son is on waiting list for a manual evacuation and a week long admission to get the irrigation working well- so his chronic soiling stops- but I think it’s going to be months because of the virus and the popularity of his surgeon.

So I understand how troubling it is and on a positive note, for my son, he’s coping so much better now (he’s 11) then when the problem first became intractable (age 9).

I hope over time you can find a regime that helps the constipation reduce xx

[Pink12345678 in reply to Robinia]

Hi Robinia thank you for your reply I’m sorry it’s taken so long. My daughter has since had her colonoscopy and gastroscopy and I was hoping and I think the consultant was hoping to have answers yet they had to take tissue away to be looked at and can take up to 6 weeks!! I just hope we get some answers after everything she’s had done , what I was upset about was she was still impacted when they went in to look and she hadn’t eaten for 2 days and had the clear out medication? So that was odd yet they couldn’t say why until all tests come back. I just want her out of this pain and to stop getting so impacted so quick..she’s in 15 ml Senna 15 ml pico and has Movicol sachets as of when but drinks loads so told to not over do that as she was having accidents . Has ur son had a colonoscopy??

[Nanoiu]

Have you tied enemas, we have used Microlax and Fleet enemas in conjunction with top down medication (Molaxole and Sennokot).

We are waiting for Peristeen, see if available in your area, not easy to get a professional to prescribe it because it costs the system money.

Highly recommend reading about these two options.

[Narla2020]

My daughter has had the camera up and down at aged 4yrs old but it showed loads of hard poo,but they didnt remove the poo, they left it till last year aged 8 yrs old which really wasnt good enough they did Kleen prep which was horrible to go through with her.my next thing is MRI as XRay are all showing she is blocked up. Didnt know I could pay privately for it. No blood doesnt sound good. It seems like the case like me they just do not listen as drs.