6 year old soiling

[Nursey_75]

Hi there - I have a 6 year old who has been seen by the Bowel specialist service due to constipation and stool holding. We were seen in Feb and have made no progress - the service is so under staffed that they cannot really work with us as such and just email asking us to complete diaries etc - does anyone know f any private services around that might be able to work with us se we can get on top of this? Many thanks.

[Birchykel1]

Hi,

My daughter is 8, had chronic constipation since she was around 2. We were lucky I guess, our consultant suggested we were seen by Great Ormond street to have some tests to make sure everything had been checked first physically. Is this something you have already been through?

We are now learning to cope with it, because it looks like it will be long term.

Her rectum is stretched so she doesn’t feel that she needs a poo, lost all sense of smell if she has an accident too. It’s got better, not as horrific.

One interesting thing though is although they don’t think it’s allergies she can’t have yogurts or ice cream because it causes her such pain and she ends up on the toilet losing lots of fluids (her poos aren’t solid due to the medication she is on).

I don’t know about private help, I’m sure Eric charity would be able to point you in the right direction?

It’s very hard and frustrating but it will get easier.

[DPLT]

Can you ask to be referred to another hospital. We were in the exact same situation a year ago, we asked gp to refer our son to another hospital which he is now under and on the road to recovery after manual disimpacting. And a ton of medication! You have a right to be treated anywhere within the nhs. We were also looking into private as we were so desperate.

[Skyfullofstars1]

Hi, I did also look it privet when things were at there worst.. My daughters bladder the ruptured due to the compacted bowel and then it was more of an emergency and that’s why we got seen. It was a really stressful and worrying time but I don’t know how long we would have waited if this didn’t happen. We were in for a week to completely clear out then lots of medication to keep the poo soft to allow the bowel to shrink. One year on and she’s doing great! We still sit after meals and ate on a maintenance dose. Maybe a different hospital? The Eric help line might be able to help xx

[Nursey_75]

Thank you so much for the replies - we were seen last Feb by the specialist nurse and have not been seen since, she gave us a plan but it's not worked, they are so stretched that they are now unable to respond to emails which has been the main support until now. My little boy wont even sit on the toilet! We have created him his own space where he has a little loo, can write on the tiles, put stickers on the walls etc - not interested, he just won't do it. We've tried rewards etc - no good. Nothing seems to work. I will call the Eric line and ask for some advice on what next.... I really don't feel that we can wait another 12 months to be seen again though..my son is now in Year 1 and its getting hard for him. Thanks again for the support.

[CR2009 in reply to Nursey_75]

I’m going through the exact same with my 4 year old son. He has had issues since he was 9 months old. He has been on so much medication from movicol, lactulose, sodium picosulfate , enemas etc but he still struggles. I complained to PALS at the hospital he is at and the Doctor apologised and said they would see him every 3 months but 10 months on and he hasn’t had an appointment. He is also under the community bowel and continence team ( organised by health visitor the end of last year) who have been pretty helpful but still I feel we are going round in circles. I’m going the GP with him on Wednesday and going to speak about possibly going to another hospital as that might be an option like somebody has mentioned on this. We also have bowel issues in the family yet nobody has done any tests on my son to check him. I really feel for you and it’s very hard and stressful..