No medicines are working on my daughter. Tried Movicol with senna/ sodium picosulphte/ biscodyl.

[Ztoorawa]

Hi. Apologies for the very long text but I'm at wits end on what could be wrong.

I've searched every where for a case of constipation like my daughters. She is 11 and has had two losts of disempactions in the last 8 months. The first worked but gave her a lot of bizzare symptoms including chest pain, back pain and pain in all her joints , fingers, toes, hips, ankles, wrists... and what seemed to be muscular pain too. We were back and forth to the Drs and hospital but no tests indicated what it could be. She's been referred to gastro specialist but we are still waiting to be seen. The bizzare pains disappeared once her constpation was better. Over the last 3 months she's become constipated again. This time thankfully there's no other pains apart from chest and occasionally back pain and heart burn but this time we have done the disempaction regime and its not worked.

She was, through the consultant increased to double the recommended dose of sodium picosulphte (20ml) and movicol was continued for 21 day instead of 14. Dispite this she would poo small amounts of poop of paste consistency. There were some loose stools initially when we reached 12 sachets but by about day 10 of 12 movicol everything almost stopped. At the end of the 21 days we had no choice but to start reducing the movicol until we were back to 4 a day. But the poo was building up again and I could tell she would become impacted again so I tried biscodyl 10mg and it seemed to do the trick and she had massive bowl movements and felt much better. Only this lasted about 5 days n then she stopped pooing again. After seeing the community nurse currently we are on 5 movicol and 2 or 3 biscodyl on alternating days. She's going for poos every 2-3 days on this for a normal large poo.

Thank you for reading. I'm am going out of my mind. I'm sure there is something seriously wrong here. Please if anyone has any ideas please share.

Thanks

[Robinia]

From what you are describing, it sounds like the current medication is enabling her to poo which is really positive. In terms of the physical symptoms of constipation, they can be very very severe. It might be worth you trying a chiropractor or osteopath, preferably 1 who specialises in children. They can help with symptom relief. Is she soiling constantly? My son is hopefully going to be prescribed trans anal irrigation system next month. Will post about it if it happens 😁

[Ztoorawa in reply to Robinia]

Thankyou for taking the time to reply. Really appreciated..

There's no soiling at all. Her poos are now normal on this regime. Type 4, but

I'm still s a little worried that she goes every 2 to 3 days on so much medication.

The nurse did suggest that like your son the gastro ppl may suggests Some sort of regular enema if she feels comfortable doing it. Or maybe they'll do further tests/ biopsies to check for polyps.

I'm sooo worried. So good to be able to talk to others on here. There is a current waiting list at Manchester childrens Hospital of 32 weeks. So our 32 weeks are up at the end of this week. Then we should get an appointment to be seen in 6 weeks time. She's at an age when she hates to be talking to ppl about her bowel problems. She has cuts from trying to poop too and she's reluctant to see the Drs for it. Got her some ointment from them that I'm hoping will help.

Let me know how you get on with your son. Wishing you the best x

[Robinia in reply to Ztoorawa]

Lets keep in touch. My son is 10 so I totally relate to the impact it has on them. He has a hospital psychologist and has seen private Hypnotherapist, chiropractor and osteopath. He has a gym ball at school and home and childminders which helps with the pain. He soils constantly and can’t open his bowels other than that despite sitting on the loo 2/3 times a day for 20 mins each time. Tell your daughter she’s not alone! Big hugs xx

[Ztoorawa in reply to Robinia]

Oh poor little man. He's having a really hard time. It interferes so much with school progress too. Hope he can get everything sorted. I guess your in a worse situation with the soiling. Must be difficult with school.

My daughter often leaves little notes for me on my bed or stuck on her door saying she can't do it anymore... maybe if things don't settle I'll ask for a psychology referral too.

Let's do keep in touch .. Really do hope he has full and good health always xx

[Robinia in reply to Ztoorawa]

Although the psychology hasn’t improved the physical situation I think it’s helped us to talk about it. He did become suicidal at one point which was really hard. I would deffo pursue the psychology if your daughter is willing. He sees a psychologist at the hospital in clinical health so they specialise in health related psychological issues. Took 6 months plus to see anyone so worth putting in for it sooner rather than later. There’s quite a few of us on here who can really relate to your situation. All we can do is fight on their behalf to get what they need. We are on our third hospital lol!! X

[Ztoorawa in reply to Robinia]

Will definitely look into a psych referral. My eldest deveoped anxiety isssues that were triggeted by stomach problems.( Wasnt constipation.) Took a year and a half of tests n medicines before she got seen by gastro specialist who put a camera down and found she had a really inflamed stomach caused by a bug called helicobacter pylori. Took nearly 6 months of antibiotics to eradicate it. Her stomach problems are gone but shes been left with anxiety problems. Which is why I don't agree with the slow process that they do here. Few enemas would have solved things months ago.

Thanks again for your advise. She has started going more often. Think if she carries on like this then it's a matter of keep her bowels empty so they can heal from all the stretching from the disempaction.

[Mandy7]

I had done 2 disimpactions on my almost 6 year old son in the last month and a bit. I thought surely he had to be empty. We got an x-ray done and it showed huge masses still stuck in his colon and rectum. The GP (because our specialist was useless) swapped him to movicol from osmolax, and said to give him an enema 2 days in a row and suppositories in between. Last night (1st night of enema and suppositories and movicol) I saw some rabbit droppings which must have come from the hard masses. We get another x-ray next week to see if it’s clearing. I suggest requesting an x-ray, enemas and suppositories. I was really nervous about them but they seem to be what’s making the difference. If they are really compacted, there’s only so much an oral laxative will do.

[Ztoorawa in reply to Mandy7]

Oh poor baby. Hope it works. Stick with it.

I think in this country sometimes the Drs are very slow or overly cautious to do things. I asked for an enema the last time this happened but they kept telling me it's a last resort as it's not nice for the child, especially an older child to have things up their bottom. So months of agonising pain, missing school, sleepless nights is good I guess.

I pray he makes full recovery and has good health always .

[Mandy7 in reply to Ztoorawa]

I’m in Australia. The specialist we were seeing was no help. She put him on osmolax and just said increase his dose......for 2.5 years!! I went back to the go asking if there’s someone else we can see and she started helping me. She’s been amazing!! Ordered the x-ray straight away, got the results saw how chocked up he was, said enemas and suppositories and swapped him to movicol dimspaction dosed. Surprisingly I think given his age (5) he’s just accepted the enemas and suppositories. It’s the movicol that has turned into a nightmare!! I really prey we get this sorted before he’s the same age as yours because I really feel for those poor kids. They just wanna be a normal kid. And it would be so much harder to hide. Not to mention you. I can’t tell you how many times I’ve broken down in tears from this just in the last 18 months. However until 6 months ago I thought we were the only ones and had no idea encopresis was a real thing. Gotta say I’m much more relieved since finding this group