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Rectal Biopsy - advice please

(12 Posts)
MrsM42 Fri 30-Dec-16 15:13:13

Hi,

My 3 year old has suffered from Chronic constipation since he was born. He didn't pass meconium until he was over 24 hours old, and it wasn't like my other children's - it was like rabbit droppings. I have been back and forward to the GP and our local hospital since he was a few weeks old. They have steadily increased his laxative dose, but even with osmotic and stimulant laxatives, it is not uncommon for him to go up to 7 weeks in between bowel movements.

He hsa just been in the RVI in Newcastle and has had a rectal biopsy taken to test for Hirschsprung's Disease. The consultant said that if it cam back negative, he would be discharged back to his local hospital for treatment, but if it was positive then he would remian under the care of the RVI. His Aunt suffers fro Hirschsprungs, and although it dramatically increases his chances of having it, they are still only 5%.

My big concern is that he will be discharged back to the same people who have done nothing for 3 years except increase his laxative dose. The result of this is that he is in constant pain but still not able to have a poo! During the biopsy, the surgeon told us that he was impacted throughout his entire colon, despite being on movicol, lactulose and picosulfate.

Can anyone please tell me if there are any other options for me to ask about? I really don't want to just keep on increasing the laxatives he takes when clearly, they are not working! He has been taking these particular laxatives for a year now and he is still not able to clear anything out of his colon. I really just don't want to be palmed off again, butI don't know if there is anything else or any other treatment that I can talk to them about and discuss with them.

If anyone has any advice or ideas then please let me know.

Thanks in advance from a sleep-deprived and desperate Mum x

smallchair Fri 30-Dec-16 18:10:45

I'm afraid I can't offer any constructive help, as I've no experience in this field, but just wanted to move your post up in active threads to see if any of the evening posters can offer advice. I remember a few months ago there was another poster who's daughter was having terrible issues with constipation and there were a number of posters who were offering advice on "good" hospitals for paediatric GI issues. Hopefully some of them will pop in here too if they see it

MrsM42 Fri 30-Dec-16 18:26:06

Thank you so much, that was very thoughtful xx

MrsM42 Sat 31-Dec-16 13:56:37

Sorry- I'm just moving this up the active posts in the hope that someone has an idea! xx

nevermindagain Sun 01-Jan-17 09:17:36

Hi OP
We are in a very similar situation. I was actually reading this in disbelief as I have never heard any anyone else going through this and movicol not sorting them out.
Movicol doesn't work for us, it just makes DD leak little bits all day, so I have to clean her up constantly. No way can she go to nursery or carry on normal life on that horrible stuff.
Pico does work (so we are more fortunate there) but it takes 16+ hours to start working , she needs a huge dose and then the whole next day is written off with cramps, she is pale lays on the floor crying and can't move. While going through loads of nappies and pooing mucus by the end of it. A slightly smaller dose won't produce any poo.
She was in hospital for around 2 weeks early 2016 getting disimpacted (we had 3 threads about it!)
And with the help of MN that was when she started to be taken seriously after a very long battle and her suffering for a long time.
We are now seen by a specialist who is horrible and dismissive and doesn't care about her quality of life. Doesn't listen. Writes us off as anxious.
DD grew less than 2cm this year, doesn't gain wait, falling through both centiles.
We pushed for the biopsy and had that done a while back and still have no results!
My fear is that if it is hirchsprungs she will have a lot of surgery and the impact on the rest of her life will be significant.
And if it is negative then we are back to square one and we will be left to get on with it and she will still be suffering.
Just wanted to share this so you know you are not alone and I absolutely understand what you are going through as a family.
For your DS to still be so severely impacted on pico I can't help but feel it MUST be hirchsprungs and I really really hope you get the results and a diagnosis very soon.

nevermindagain Sun 01-Jan-17 09:20:48

Does he have any signs of hypermobility or EDS?
If DD's biopsy comes back negative then we will be looking into those conditions, as they can cause severe constipation due to the body producing too much collagen and everything being too loose and stretchy (VERY oversimplified explanation)
DD's joints are not stable, she is far too flexible and suffers lots of pain and aches. It also runs in my family

nevermindagain Sun 01-Jan-17 09:22:06

DD turns 4 very soon so both our DC are very similar in age. Please feel free to pm me if you want to chat more privately, we may even be in the same area.
flowersflowers

littledinaco Sun 01-Jan-17 09:42:39

I have a 7 year old with similar, like nevermindagain DD was disimpacted several years ago. Also had biopsy which cane back clear.

Movicol doesn't work at all for DD either, yet doesn't stop everyone we see insisting on trying it again!

Pico works but as pp, we have to give large amounts to be effective and DD is in a lot of pain with it.

I worry about the effects of being on laxatives long term.

We have seen various consultants over the years but no one has offered a solution other than managing it as best we can with medication. Blood tests have also ruled other things out.

The only thing we have found to be effective is exercise but only if we can get DD walking for literally hours and hours every day. When we go on holiday and she is literally walking around ALL day then we get a big improvement but its only temporary. It's just impossible to sustain this level of exercise every day with school,etc.

Sorry I haven't got any advice. Good luck with it.

nevermindagain Sun 01-Jan-17 09:50:10

What is it with the movicol pushing?
It makes our lives 10x harder. Makes DD self conscious and smelly.
Doesn't actually get the poo out.
Makes my blood boil.

I really don't think parents are being listened too.
Little I'm so sorry your DD and it's important to say your family too - as it affects everyone, are still suffering at 7.
It shows that the 'she will grow out of it' line is nonsense.

Does her condition cause any problems with time off school?
How to do you manage to pico her enough without sacrificing school and day to day commitments?
Curious to see if I am missing a trick and I manage terrible with this.
You must be exhausted with it all.
flowersflowers

nevermindagain Sun 01-Jan-17 09:52:45

DD's growth has plummeted off the charts since starting pico.
Instead of a curve it has dramatically fallen and it's linear.
I'm sure that proves that there are negative effects to prolonged heavy use of laxatives

Tweedledumb0 Sun 01-Jan-17 09:52:47

Message withdrawn at poster's request.

MrsM42 Sun 01-Jan-17 10:00:11

Thanks so much nevermindagain - I have sent you a PM.

littledinaco - It's so nice to know I am not alone with my concerns. My big worry is that picosulfate doesn't clear him out, it just seems ot give him a really sore stomach and nothing happens!

It's such a dreadful position to be in
xxx

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