Not sure where to turn!

[Isabel-123]

My daughter has suffered from spoiling and constipation since potty training. She has been taking Movicol for 5 years and we have been left to it!

My last visit to the doctors seemed hopfull, she asked me to speak with the school nurse but because we live on the border of 2 districts and she schools in one and doctor is in the other the school nurse would not see her and was told to return to the doctors. The doctor advised me I she would be refurred to the hospital and I would be contact. Months went by and I never herd anything. I chased this up and got a doctor to phone me back he told me it would be a waste of time to send her to the hospital and I need to increase medicine. Which I have. We go away in a few days and I don't know how to cope as she stinks and is soiling 3 to5 times a day.

I feel let down. I have had so much different advice and now I have little hope in her ever been able to go 'normal' .I am worried as she is now 7 1/2 that school friends will one day notice and she will be a target for bullies.

Any advice please. 😩

[Lubo2009]

Isabel,

Not so much advice but I know how you feel! I too feel we have been left on our own. I really think more support is required for families.

I am going to push for a hospital referral now- I feel, for us, things have gone on now for too long as is.

Good Luck

[Isabel-123 in reply to Lubo2009]

I feel the same. Hopefully we will get the helperfect we need.

[Morleyslass]

Hi Isabel, my daughter is 7 and used to soil the same as your daughter, we found movicol alone didn’t work and she needed a stimulant she now has picosulfate ( dulcolax) which makes her Bowel contract. We’ve also tried sennakot but didn’t have the same effect. My daughter is under a paediatrician at Leeds general and he has been fab, so I would continue to push for her to be referred. My daughters Bowel often blocks and she needs clear outs so large doses of movicol over a week to help. If you contact Eric the Bowel and bladder charity they May be able to offer advice.

[Isabel-123 in reply to Morleyslass]

Thank you. Think she will be going back your doctors this week. Hopefully see someone that will get us the help we need.

[Knittingmama]

You’re not alone. I really don’t think doctors have any idea when it comes to this. We went for the same amount of time being told there was no where she could be referred to and to just keep going with the medicine. We’d pretty much given up before she went 6 weeks without doing anything. After speaking to three different doctors we were finally referred to a paediatrician and it seems she’s actually dairy intolerant and the problem appears to have completely disappeared.

Be firm, tell them it’s not getting better and you want to be referred.

Good luck x

[Isabel-123 in reply to Knittingmama]

Thank you, I will.

[lyns08]

Hi I think you definitely need to get referred to a hospital paediatrician about this. Whatever dosage of movicol you are using it is obviously not working and they need to look into trying something else. We have just seen one a few weeks ago and the first thing they wanted to do before deciding on any other treatment is to run blood tests to rule out dairy and gluten intolerances so this may be something to get checked. We are waiting for results now but we have also been told to keep a diary of the number of poos each day and amounts so it is easier for them to see what is going on. The consultant I saw has also said that they find doing clearouts with movicol doesn't work very well and that they prefer to bring children in to do it in hospital if that is what they need. So definitely push for a referral, I feel like we are finally getting some proper help.

[naimaro]

I feel for you and you are not alone. After going to GP for 2 or 3 years we decided to act. We pushed for a hospital referral. For GP I really don't think they know when it comes to these type of problems, they can give you movicol but that's it. Please insist to be referred to hospital, they know about it more.

Best of luck

[Isabel-123]

Will do thank you.

[Frustratedmum1]

You are defintly not alone. It will hopefully improve but it takes time.

Once I asked the doctors for a referral. We had to chase it up and push for it. It is wrong. I found uou really have to fight to get progress.

When you get a referral ask for blood tests and an x-ray. On examination my son didn't appear to be blocked up significantly. The x-ray came back his whole colon was blocked. I dont know but before you go to a paeditrian appointment it may be worth doing a discompaction programme and then hopefully you are starting from a better place.

Hope things get better for you. I will be thinking of you.

[Louloubelle23]

Hi Isabel

I absolutely agree with everyone else - really push to be referred to the hospital. If the doctor you see refuses, see another one! Your daughter is 7.5. Learn from my mistake - the longer the problem continues, the harder it is to fix. My daughter is 10 now and been soiling her whole life. I left it too long to get help because I thought it was a potty training, then behaviour issue. Had a few failed attempts with the doctors, another failed attempt with a continence nurse and I left it too long between times, thinking she'd grow out of it, before getting referred to hospital.

18 months into hospital treatment and we aren't getting anywhere I'm sorry to say, but I think that's because she's had constipation and a very stretched bowel for such a long time that it's just taking a long time to repair itself.

So, like I say, the sooner you get proper help the better I think.

Wishing you all the best