Constipation

[Sarsar3]

Hi everyone , could anyone tell me the amount of sodium picosulfate they give their child please , more so on a maintenance dose. I’m really struggling to find a happy medium for a maintenance dose for my son. We are constantly having to disimpact because he get blocked up whenever I reduce the laxatives . Iv been giving 10ml of stimulant a day but to be that seems quite a lot .

Many thanks

Sarah

[Skyfullofstars1]

My daughter is on a different medication. Currently 2 laxido and 5mls docusate. I see this medication mentioned A lot but we were never prescribed this. She’s also had senna, lactulose and In hospital she had picolax. Maybe a different medication would help… I don’t know maybe youv already tried these other ones? Xx

[Sarsar3 in reply to Skyfullofstars1]

Hello thanks ever so much for reaching out to me it’s such a struggle isn’t it, poor little things. We haven’t tried any other medication this is just what the hospital gave us on a repeat prescription but too much gives him explosive poos and too little makes him constipated. I can’t seem to find a happy medium of medication. Iv rang helplines and back and forth to hospital. Il keep trying but thank you for your advice. Take care x

[laura2512]

Hi Sarah

We have fluctuated between 9-20 mils of picolsuphate over the last 18months and is currently on 10mls and 3 sachets of movicol as a maintenance dose but it often has to be adjusted up which results in even further pain and spasms it’s a constant juggling act. She has tried other medications over the last 5/6 years but this combination amd dose have finally started to slowly help the last few months.

She frequently still has to do the full movicol disimpaction regime as hospital enemas don’t work… she’s had to have surgery for them to manually evacuate her bowel too. Her “maintemce” dose still results in much pain, soiling, missed school etc it’s an endless horrid cycle.

We are finally on the waiting list to have an ACES stoma fitted as even though shes had tests to show no underlying cause and is deemed as having chronic idiopathic constipation, her bowel is so stretched that this is the only option to give her bowel chance to be flushed through daily without the extreme pain and give time for her bowel to shrink a little.

We’ve had a horrific time of it the last few years and people don’t take it seriously as they say oh it’s just a bit of constipation… give them some prunes… if only that was the case 🙈 xx

The 10ml dose might seem high, but the drs wouldn’t let you give that much if not needed x Sending lots of love x

[Sarsar3 in reply to laura2512]

Hi Laura thank you so much for reaching out to me. Our poor babies it’s horrific watching them suffer so bad. You seem to have been dealing with this for such a long time! We have been going through this for a year now and in my head I’m like surely this isn’t right I give him a daily dosage of 4 sachets and he still becomes impacted it just doesn’t make sense in my head how can he still get backed up even on laxatives! But it’s not like he’s doesnt poo he goes 2-3 times a day but but every week or 2 he’s doubled over in pain so I have to disimpact him again , which to me is such a large amount of medication making up 12 sachets of laxido and 10 ml of picsolsulfate . Like you said he has several days off school because during this time the poos are explosive and majority of the time he barely makes it to the toilet and the embarrassment upsets him so much. It’s happened at school, football he’s just mortified. I just want to find a happy medium dosage that works for him and he can get better. I keep thinking there must be an underlining issue surely ???? He’s never had a scan or anything like that the hospital just feel his tummy and say he’s backed up. I don’t feel like I’m getting anywhere. Could you explain what a stoma is I’m unaware what that is? Thank you again for your support and advice x

[laura2512]

Just horrible I know! It’s been a constant battle and I’ve seen different consultants at different hospitals who just don’t get it and always said she would grow out of it so never had the proper medications. As a result of years of severe constipation her colon has become so stretched that she doesn’t have the urge to go and once it’s full it’s so hard and impacted she can’t pass anything and it’s just overflow etc. I fought for scans etc but nope until I took her to A&E at the children’s hospital 2 days in a row where she has 2 unsuccessful enemas then was admitted and stayed in for 3 weeks where 12sachets of movicol, 20mls senna didn’t work, had 2 litres KleanPrep and nothing and eventually had to have manual disimpaction in surgery. She had scans and X-rays while there showing chronic impaction and has had blood tests and biopsies which all show no underlying health conditions… therefore it’s all a result of severe constipation when younger (61-2 now) leading to stretched colon and only high level meds can “help” her go. She was referred to the colorectal team after I refused to leave the hospital as the gernalel paeds just told me to call Eric and get a toilet routine sorted… was sooooooooo angry as even after all that time, they were still so dismissive!

The colorectal team have been amazing and we have had to continually adjust medications but call me once a week to keep an eye on things. We even tried a few weeks of trans anal irrigation where I had to try to get a loathe come up her bum and flush through 800mls of saline and phosphate enema… needless to say this was so traumatic trying to get a 2 inch cone in her bum single handed while holding her and dealing with tubes… was stop distressing so had to stop after 2 weeks. As she been on high levels for so long and is in so much constant pain, her consultant feels an ACES stoma is the next step. This is where her appendix and colon will be attached together and a tube will run through it and come out through her stomach so she will have an opening and tube running directly to her colon. I will then have to do wash outs through tubes into the hole (stoma) each night where it will travel through the entire large intestine and flush the poo straight out… This will give time over a few years for her bowel to hopefully shrink back to size and muscle control etc can improve.

It’s been a nightmare and people still just say it’s because I wasn’t forceful enough with “toilet” training it’s just so upsetting that no one sees the constant pain they are in and are so dismissive. If diagnosis was worded differently even though symptoms etc the same, I think people would take it more seriously! It’s been a very hard constant fight and I am very drained but there is hopefully some light at the end of the tunnel 🤞 I am attempting to get some DLA for her but as her condition isn’t linked to a learning disability, it is likely to be turned down even though the level of care is huge especially at night, and requires same amount of support, she would need an additional diagnosis to be taken seriously by a “decision maker”. So sorry such a long rant… you only asked about the dosage! Just so frustrated and we had a very long night last night so I’m feeling super argh today! How long has your little one had problems for? The sooner her bowel can be kept empty as often as possible the less likely it is to severely stretch x I wish I had more info when all this started! Xx