9yr old with impacted bowel & incontinence for over a year, help

[lillith112]

Can anyone please help me, I am literally at my wits end. Over a year ago my daughter started soiling her knickers, turned out to be impacted bowel, and according to the nurses the xray was spectacular with a huge solid mass taking up her entire pelvis. After a week of nose tubing, movicol and clean prep the mass was slightly smaller but still very much there. I was sent home with loads of movicol and appointments with the consultant and continence nurse. The consultant was rubbish and discharged her saying my daughter was fine now, even though the mass was still there !.To cut a long story short, we have tried senna, lactulose and something else. My daughter has been in hospital 3 times and nothing has worked, she has permanent faecal incontinence and has poop constantly running out, she has to wear pads all the time. This not only impacts on her but the whole family.
My mum paid for us to go and see a private consultant yesterday and he basically said the hospital had not got rid of the mass, it's still there, her bowel is stretched like a balloon and she needs to go back in again, the problem is even if the mass is clear he said she will have to sit on the loo throughout the day or the bowel will never shrink down and muscles will never recover. She has no feeling at all to go to the toilet, I have to tell her to go every day and she gets in such a mess.
I'm devastated with it all and so upset, what sort of health professionals can let a 9yr old carry on like this ?.
Any help or an outside opinion greatly appreciated. xx

 

[JD.Deedee]

I know for the feeling and pelvic control you can ask for a referrals to the pelvic physio. They have good knowledge on bowel movement and such too so they might be more help in getting it sorted. Maybe go a&e to have the mass removed, is it not making her ill?

 

[Maaaaaac]

My sister is 14 with a learning disability and this exact thing has been her issue for a few years. She is on laxido (movicol) and lactulose both three times a times and frequently requires enema suppositories as a mass keeps building. She wears pads 24hrs a day and has constant leakage. We have had such a battle getting medical help they kept saying it was behaviour and she wasnt toilet trained properly, then it was food intolerances/allergies or IBs. After my mum had short of a meltdown she was referred and a consultant has suggested surgery to tighten her bowel. We dont know much more and are awaiting investigations, so i can only whole heartedly sympathise with you. It is so difficult and my sister is so down about it. I will keep you informed of any appointments that happen and in meantime please feel free to chat

 

[Glordag]

That is so sad for your little girl. Really hope you are able to get it sorted soon x

 

[lillith112]

I know for the feeling and pelvic control you can ask for a referrals to the pelvic physio. They have good knowledge on bowel movement and such too so they might be more help in getting it sorted. Maybe go a&e to have the mass removed, is it not making her ill?

Thankyou Deedee, I never thought of going down the physio route. Thankyou for your reply.xx

 

[lillith112]

My sister is 14 with a learning disability and this exact thing has been her issue for a few years. She is on laxido (movicol) and lactulose both three times a times and frequently requires enema suppositories as a mass keeps building. She wears pads 24hrs a day and has constant leakage. We have had such a battle getting medical help they kept saying it was behaviour and she wasnt toilet trained properly, then it was food intolerances/allergies or IBs. After my mum had short of a meltdown she was referred and a consultant has suggested surgery to tighten her bowel. We dont know much more and are awaiting investigations, so i can only whole heartedly sympathise with you. It is so difficult and my sister is so down about it. I will keep you informed of any appointments that happen and in meantime please feel free to chat

Wow Maaaaaaac, exactly the same issue, I forgot to mention that we also tried suppositories and enemas too. I think my daughter will need some sort of surgery as she has had zero improvement. Are you in the UK ? What consultant has your sister been referred to ?, is it a Gastroenterologist ?. Please let me know how you get on. The continence nurse also said it was my daughters behaviour causing it !. I'm so sorry you are going through exactly the same thing. xx

 

[lillith112]

That is so sad for your little girl. Really hope you are able to get it sorted soon x

Thankyou Glordag, it is very sad for her, I feel so helpless as the health professionals just don't want to help. xx

 

[MrsS15]

Hi lilith, I'm a children's nurse and work on a gastro ward with children like your daughter every day. It's terrible the way you've been treated, we obviously go down the same route with ng tubes and litres of klean prep. Do they xray her while there and rexray her before you go home? Has she had any scopes done to find out whats going on in there and possible biopsies? If not I think that's what's needed. If the mass is still there she's definitely not going to get any better with the leakage etc. Poor girl! I know this thread is a couple of weeks old but let us know how she is xx

 

[Maaaaaac]

Oh my gosh im so sorry I dont know how i missed the reply! I was just checking in to see how everything was going.

To answer your questions yes we're inthe UK. Over in NI. It was just a pediatric consultant who saw here originally and shes now referred to gastroenterology but have had no further word.

My sister will have to be sedated for any tests so there's a few logistics to be worked out and in meantime theyve just been checking her bloods that's all. She was referred to a feeding clinic to monitor her diet and intake but they didn't feel it was diet or an allergy causing the problems so she was discharged.

Hope you get answers and help soon x