New here, saying hi

[Busymum1984]

Hello, I’m new here. My name is Victoria and I have a daughter age 7.5, she has had encopresis and constipation for at least two plus years. We lived in Somerset and received practically no help whatsoever, we’ve now moved to South Yorkshire and we will see what help we get this time. She takes movicol and is about to start disempaction for the second time next week, the first time did nothing and because she didn’t react as expected she was effectively discharged.

[Robinia]

Hi there, welcome to the forum. I’m pleased you’re here as I have found so much help and support here. It’s such a relief to feel less alone and be able to share experience and things that have worked. There are some very useful threads on here with lots of useful info in.

I hope you have found a supportive GP in South Yorkshire who is going to refer you for continence service or similar. Disimpaction doesn’t always work first time in my experience but it’s possible you might be able to tweak things second time round. Personally I’m trying upping fluids at the moment, almost treating drinking as a form of medicine. I’ve also re-inflated my son’s gym ball and he’s bouncing on it every day after school. I’m also ordering him a trampoline as soon as I’ve organised a couple of mates to help assembling it! Another thing we do is daily sitting on the loo every morning and evening after eating and drinking with a squatty potty footstool for 10/15 minutes.

My son (age 9) has lost all bowel control following severe impaction and multiple enemas so is in nappies all the time. At the moment sitting on the loo is just going through the motions but the gastroenterologist said this week he will poo on the loo when he is ready and we have to wait for his brain and his bottom to send messages to each other. I suspect it’s going to be a long wait!! He’s on 4 sachets movicol daily following a week disimpaction last week. What’s your daughter’s maintenance dose? And what happened when you tried the disimpaction?

[Busymum1984 in reply to Robinia]

Thanks for the reply. Megan was on 2 sachets previously daily, following disempaction we went up to 12 sachets (she was 5 years old). We were told that as she had been on movicol for about 6 months beforehand that it’s unlikely she would get to 12 but she was on this top dose for three days before the watery poo came in. After going back down to 10 sachets two days later her poo went right back to what it was before we started and no difference at all since then.

This time she’s started on 4 sachets, we will see what she will need as a maintenance depending on how she responds. Last time because this wasn’t supposed to happen we were told that something wasn’t right, the doctors didn’t know what, they didn’t want to do anything invasive (like a scan or x Ray, all diagnoses and treatment by looking and talking) so they said they can’t help and just sent us back to GP to start all over again.

I didn’t think about gym balls and trampolines!! What a fab idea to help, I knew about the water and toileting but I’m soaking up any information I can get.

Thanks for your reply!! X

[Robinia in reply to Busymum1984]

My son hasn’t been able to fart without us tickling him and holding his legs and getting him to push until now, but now he’s using the gym ball he can make himself get his trapped wind out!

I’m convinced there’s a massive physiotherapy aspect to shifting constipation when it’s been around for ages, I feel like my son’s bowel has lost its natural motion and is stuck and sluggish.

I’m really hopeful for the trampoline....assuming he doesn’t break a limb 😂😂😂

[Robinia in reply to Busymum1984]

Btw, previously I did a disimpaction that seemed to work but then no poo after and on reflection I think it would have been better if I had stayed on 12 sachets for longer than 3 days (my son has just done 5 days of 12 sachets at the end of a week of disimpaction. It might seem extreme but compared with the agony of high enemas and the gastritis he developed as a result of sodium picasulphate it seems to me like extending the movicol is a gentler option. Best to check with GP obvs but I’ve found they vary in how helpful and knowledgable they are! Lots of people on here have found adding Senna has helped xx

[Busymum1984]

Can I ask what the Senna does please? Soaking up all info possible!! Yes I’ve found many doctors vary in usefulness and knowledge, some very single minded and if it doesn’t go how they expect become closed off and don’t want to know.

I did wonder about extending the movicol higher dose ..... everything is so useful. Someone once said about a probiotic as well, re establish a healthy gut in the hopes that everything further along gets better too.

[Robinia in reply to Busymum1984]

My son takes a daily probiotic and something called oxypowder, it’s expensive but does seem to help. I paid to see a private nutritionist and she recommended the oxypowder. The Senna is a stimulant that helps push the poo out, it’s probably best to discuss using it with a good GP as they can prescribe it and recommend what dose to try. The Senna never seemed to work for my son and as he’s recovering from gastritis I wouldn’t give it to him but plenty of people on here have said it helps. Is your daughter in a daily sitting regime on the toilet? It’s taken time for me to establish one for my son and it involves him going on games on one of our phones but he seems to have got used to it now. I definitely think he’s one of those kids who forgets to drink and is so busy doing stuff that he can’t be bothered with sitting on the loo without prompting. I know he has no sensation there as well, I’ve found after severe constipation the feeling can completely go.

Tbh you sound so committed and proactive I know you are going to crack this 😁 I think everyone on here dies given enough time (in my case I’m still learning all the time and it all started 7 years ago!!! 😂)

[Busymum1984 in reply to Robinia]

Aww thank you. And thanks for all the help and advice, pretty much I’ve been left to wing it on my own and find my own information out. Not bad but given that at the time of diagnosis I had twins aged 2 and a boy aged 6 at the time - then became a single parent and now setting up life with two more kids ..... doesn’t leave much in time to practice everything. But we do our best, I try to do what I can to help and hoping between us we can do this. Thinking of trying a timer as well to remind her and me for regular toilet sitting. We did have a stool but found it made no difference and now she will sit on the toilet but we have no stool. It’s on my list of things to help!! Oxypowder sounds like a good thing to look into as well, anything to try and see what can help. I can’t say it enough but thank you again!! Xx

[Louloubelle23]

Hi Busymum

Just another little tip that might help when doing the routine sitting on the toilet after meals for 10 minutes...

My daughter also sits playing games on her iPod but the paediatrician said that they can get so engrossed with that that they aren't really doing anything on the toilet other than sitting down - they need to push, but not the whole time.

So, what the paediatrician suggested was that she still has her iPod but set a timer to go off after every minute for 10 minutes - each time it goes off she has to push for about 10 seconds or so. It's also a good way of timing the 10 minutes and letting her know when the times up. I've found this helps with my daughter and she goes on the toilet a lot more often now. I downloaded an app called 'interval timer' (people use it for exercising usually) and set up a 10 minute session with an alarm every minute. You could get your child involved with setting it up by letting them choose the colours and alarm sounds (you can do a different one for each minute if you want).

I hope that helps. good luck

[Busymum1984 in reply to Louloubelle23]

Ooh wow this is great!! We used to blow bubbles before, as the blowing opens the bowels!! Thank you!! ☺️