A little lost!!

[Kerrylouise83]

hi, I’m the mother of a 5 year old girl who has been chronically constipated from birth.

Having been admitted several times to hospital due to being impacted, also having a rectal biopsy and manual evacuation in December, less than six months we are impacted again! This time Kleen prep was give through the nose straight into the stomach, this took almost a week to clear her.

After an x-ray we are poop free for now!!

After years of being on Movicol plus Pico sulfate we still seem to get impacted, I’m also very keen on what she eats trying to make sure it’s good stuff, but this has a massive affect on her appetite so she is underweight and hight.

We are now out of pull ups after the last disimpaction which is great for her, although slowly but surely the soiling is creeping back! ( nothing compared to before, her bottom would crack and bleed with the constant wiping) I have this constant fear for her that it isn’t going to go!!

[Robinia]

Poor you, sounds like it’s been an awful rough ride for your daughter. I hope you have a consultant on board you trust who you have some continuity with. My son soils all the time but he’s no longer impacted, seems to be that his bowel isn’t working properly yet.

I’m hoping things will improve for him some time in the next 6 months.

Your post made me wonder about food or lactose sensitivity. I’m guessing it isn’t Hirschprungs as they would have checked for that (I would hope) Does she have a high maintenance dose of movicol? Does she sit on the toilet twice daily with a stool and drink plenty?

I’m guessing the answer to all these questions is yes and it’s just unexplained why she’s been so blighted by constipation. Has she done a bowel transit test? My son did one. My friend’s daughter did one and they found she had a narrowing of the splenic flexure which gave her chronic constipation. She’s had to learn to rely on enemas. I do really feel for you and empathise with how difficult it all is. I’ve just purchased a trampoline for my kids and it seems to be helping my son (along with the gym ball he bounces on and does handstands against daily for hours) He couldn’t get any wind out without us winding him (he’s 9.5!) until he started using the gym equipment. Thinking of you and hope you have good support in place X

[Kerrylouise83 in reply to Robinia]

Hi, thanks for the reply, yea we have had biopsy for Hirschprungs it came back as negative, although they managed to manually evacuate her at the same time which revealed a huge distended bowl, to be expected really after harbouring so much poop 💩!

After the last dose of Kleen Prep we are on a maintenance of 5 movicol and 5mls of Pico sulfate daily, which makes her incredibly loose water like really! She’s actually always been quite good at sitting on the loo, it was the constant overflow that kept her in pull ups, we are now in underwear still soils but nothing compared to the 10+ a day we were getting! It also has a massive effect on her appetite she really struggles to gain weight!! Do you find this with your son? X

[Robinia in reply to Kerrylouise83]

My son lost loads of weight and was eating very little for ages, it was really hard. He’s on a maintenance dose of 4 sachets of movicol and i supplement that with stuff I’ve bought to help tackle constipation (3 different supplements!) he's also on a restricted diet (he also has gastritis) its so hard when it affects them so much and reduces their quality of life. He’s in nappies (age 9.5) but I’m hoping he will be able to go on the loo again eventually. I’m sorry to talk about poo (!) but I have noticed the consistency of his stool has improved loads and is much more like normal poo now rather than just a runny stream. Hopefully your daughter will improve in time. I’ve got the impression from the gastroenterologist it is a matter of time and consistency with the constipation meds. Let’s hopehes right!!