Trans anal irrigation

[Robinia]

So....been battling for what feels like centuries...gone through 3 hospitals.... finally a lovely surgeon has assessed my son and said “your son needs balloon transanal irrigation” the thing I have been trying to get him for a year a a half!! We are starting next Monday. Just wanted to post in case any of you out there have kids with constipation that isn’t helped by meds and are looking for another option. Easter hugs to all of you who are tired of fighting on behalf of your child and think no one will ever listen- finally someone has listened to us!! ☺️

[Misty10]

Hi that is great news for your son.were still waiting to go into hospital for bloods. They won't scan her til she over thee age of five here. So just got to wait.she four in August so frustrating.

[Robinia in reply to Misty10]

If you’re interested it might be worth trying a chiropractor who specialises in children. Another thing you could try is a nutritionist or try playing around with diet- excluding one thing at a time to see if there are any things making it worse. So your daughter is 3? That’s very young, movicol worked for my son at that age but I know there are children it doesn’t work for. I find a continence nurse more helpful than a paediatrician often as they are more available and more willing to help you tweak the meds. Do you have one supporting you?

[Misty10 in reply to Robinia]

She got all of that.we have change her diet as wheat was a issue but she not aloud to stop movelcol or senna til she aged 10 as she had her bowels problems since birth never passed poo without medication. We seen all the pros they have told us to keep her in pull ups for her own dignity, but she starts school in sept as she 30 aug baby.I do not want her in pull ups.she my 6th child thee other 5 no problem. All dry day and night by 2 and half.

[Misty10 in reply to Robinia]

Yes we have nurses ,they feel she very head strong she knows how to sit on toilet but won't we have tried everythink.even at nursery they give them the choice. im at my wit ends .

[Robinia in reply to Misty10]

I think it’s important to figure out if she is permanently constipated in which case dealing with the constipation has to come before getting her into pants. Also if you aren’t happy with your consultant find a hospital you want to go to and ask your GP to refer you. They are often reluctant to sit on the loo if they feel constipated- the whole thing can become very emotional which only makes things harder. I would advise you to write down exactly what your concerns are and discuss them with the continence nurse. Have you done multiple disimpactions with movicol and struggled with finding a maintenance dose?

[Misty10 in reply to Robinia]

Yes I've done all that she can only have up to eight sachets. Waiting to see another hospital pedritritrians I have a diary for food fluid and bm chart. She in no pain while on meds if she weren't on them she would not eat curle up in a ball and sleep.so I've been told to keep her on meds. She constipated all the time just overflow watery poo.never done a solid poo.they won't xray her til after five due to stomach is tiny so wouldn't beable to detect anythink.but really I have to sit tight and wait.i have a care plan in place for when she starts school in September. Thanks for your reply.

[Robinia in reply to Misty10]

Hope things improve over time. I know how hard it is and if things don’t improve I would push to see a different consultant. It’s reallt positive you have a care plan already in place for school. My son is 10 now but has had problems since 2.5 I’m hoping we are finally going to crack it with the bowel washouts at home. It sounds as though your daughter is potentially impacted and needs a clear out but a health professional needs to be supporting you to deal with it. So hard when it feels like you’re dealing with it on your own and no one has any answers 🙄

[Crofters in reply to Robinia]

Hi,

Really pleased that you are getting somewhere. It certainly takes a lot of fight! My daughter is also 10 and has had problems with encopresis since about 2.5/3. Her constipation is now sort of under control with movicol. We've been doing daily irrigation with the Iry pump for about 18 months and have seen a massive improvement - really hope you do too. It's not all plain sailing and she still has accidents. Wishing you and your son all the very best.

[Robinia in reply to Crofters]

That is so good to hear 😁 we are going to hospital tomorrow for his first ever irrigation- hopefully it will be successful and then we will bring the kit home and do it daily. I am not familiar with the Iry pump, so glad it’s working well ☺️

[Misty10 in reply to Robinia]

Hi we have a nurse thats on call when we need them but I rather deal with it myself and with the support from Eric. ,she holds her bowels and has serverlly stretch them.the hospital will not x ray her til after 5 years as she was prem baby she is tiny for her age very small features she has no blockage the meds are working .just got to sit and wait.but I will say the senna is a god sent she on permanently until the pros our happy with her going normally. then we're to wean her off there is no fluid in her poo now but it's just smears not a solid poo yet.we did a disimpaction 2 weeks ago with movelcol she on 3 every other day and have notice it's getting thicker not watery.