Frustration with Movicol and PicoSulphate

[Barbiecar]

Hi I’m Mum to a nearly 5yr old girl with chronic constipation. We’ve been with the paediatrician for a year now, on Movicol and Pico sulphate. It was looking better; we had reduced the Movicol to half or one sachet on the days she didn’t poo, to the point where she was off it all together. Then about a month ago her poo became constantly liquid. I figured I could reduce the Pico sulphate and that an end was in sight. But no, immediately the soiling started again, coupled with constant diarrhoea. I’m devastated for her and feel like I’ve failed her. More Movicol to clean her out produced more liquid poo and more soiling. I’m at the point where the treatment is as bad as the illness. Our next appointment is in 6 weeks. Maybe we will get somewhere with it but I also wish I could look inside and see what was really going on. The NHS seems reluctant to do an X-ray but what else can be done to REALLY know. I’d love to know if there is anyone out there who has experienced the same regression and frustration with the medication. I’d love to know if there is an age where this tends to sort itself out. I have cried with the thought of her pooing herself as an adult!

[Alicass]

Hi

I can empathise with you. My son is 7 (nearly 8) and we've had problems for 5 years.

Our Paediatrician is useless and kept him on Senekot for 2.5 years which did nothing at all. Waste of time!!!!!

We've been on Movicol since Boxing Day and have never looked back. We're disimpacting him every school holiday. In May half term we got to 10 sachets which was amazing. It had always been 12 before.

He suffered chronic constipation too and it's left him with a distended bowel (big and saggy basically). Since we started Movicol the accidents have reduced and recently we've even had days with no accidents which were very rare in the past.

There doesn't seem to be a lot of support out there from the NHS for incontinent children. It's a very stressful, emotional and long journey.

We've got to keep my son poo free for 2 years in order for his bowel to recover and get back to normal. We're 7 months down the line.

I hope you get your daughter sorted out. Don't give up. Have you seen a Paediatric Continence Nurse or the School Nurses? Have you called the ERIC helpline? If you don't feel like your Paediatrician is listening then ask your GP for a re-referal to a different one or even a different hospital.

Good luck. Just don't give up. You will get there.

Xxx

[Barbiecar in reply to Alicass]

Thank you Alicass. I’ll definitely do what you suggest look into the availability of continence nurses etc. It’s just a relief to know that there is help if you look for it. Good luck to you too x

[Alicass in reply to Barbiecar]

Thank you. You will get there. We've come a long way since we started on Movicol. Xxx

[DPLT in reply to Alicass]

We have also been here. We went back to the gp and asked to be referred to another hospital. My5 year son has just spent a week in an amazing hospital who understood the impact this was having on all our lives. They carried out an x ray and he was completely full of poo, his stomach was swollen with gas, basically no medication was going to work, it just seemed to be making things worse. They carried out a bowel stretch, manual disimpaction and biopsy. Things are 100% better. It turns out they think he's been chronically constipated since he was weeks old!! Managing now on smaller doses of medication and pretty much toilet training again. Please take my advise if your not happy push it, go to another hospital, you have the right! I wish we had years ago!! Good luck

[DPLT in reply to DPLT]

And also 6 days of kleen prep!

[Mum03]

My daughter used to be on both movicol and pico but the movicol made her soiling worse. She recently has a manual evacuation and we spent 5 days in hospital where we started her on a increasing dose of picosulfate to see what dose made her go and stopped the soiling. She now takes between 15 and 20 ml each night before bed she no longer soils but still is only pooing once or twice a week which is kind of explosive but she’s no longer bloated and we arnt using 30 pairs of knickers each week

[Skyfullofstars1]

Hi, my daughter has just turned 5 and we have had this problem for 2 and half years. We Tried the massive doses of laxido and senna too but it didn’t work. We went into hospital for a week and they gave her picolax.. and it came flying out - literally. Since them we have had 3 x docusate daily, and 2 Laxido in the morning. I have had to up it a few times. We also had a set back just a few weeks ago and I can totally understand how you feel, I was so upset at going back the way and just when she’s about to start school. I really did feel depressed about it all. I went up to 4 sachets and made sure she had a her toilet time, she always did get her 10 mins after meals but sometimes we would be out and I stopped that and made sure I was home. I also made sure she was getting at least an hour of exercise. Thankful we seem to be back on track. It really is such a difficult problem, it takes over your life. Do you have poo books? Or apps or videos to watch with your little girl? My daughter calls it her poo homework and find it quite funny. Xx

[Skyfullofstars1]

Also I pestered the life out the doctor to get a scan as the refused an x Ray. They were able to see the poo all backed up her tummy and were able to tell me her bowel was 3 x the size it should be xx

[Barbiecar in reply to Skyfullofstars1]

Wow. What sort of scan was it? I’ve been told that they can’t see much in an X-ray... I cannot believe how little support and information parents are given in these situations!!

[Skyfullofstars1]

It’s terrible really isn’t it! GPs know very little and often refuse laxatives all together. I phone and emailed and kept poo charts and eventually a paediatric consultant said I think it would be more beneficial if you come in for a week and we do a clear out in hospital so I was like yes fine, I’m there, tell me when. So that week was really a difficult but worth it week. By the end of it I still wanted an X-ray or a scan or something just to see inside to know what was going on in there. I must have asked about ten times. And on the last day I ask the nurse could she please contact the doctor and ask if I can get a scan done just to put my mind at rest if nothing else , I told her the impact this was having on the whole family etc I practically begged and she said she would send the email but it would probably be a no. The doctor came through within half an hour and said if I really want one she will do it in a few weeks time. So it was actually a bladder scan but they can see right through and I could actually see the poo all backed up her tummy and they done measurements. I guess nothing came of it other than me seeing it with my own eyes and getting confirmation that her bowel is 3x the size it should be. But I felt better having had it done and if nothing else it was there in her file to compare if the problem got worse ( not that it could have been any worse !) xx