someone help me

[Laurencharlx]

This is well and truly a beg for advice… don’t know what else to do- my son (aged 5)has suffered badly with constipation now since may. We’d finally got the movements under control after all these months of being in and out of hospital, and all of a sudden it’s started again. He’s absolutely red raw, and bleeding, the doctors only keep prescribing me movicol (which doesn’t seem to do anything) and cream which is impossible to put on him properly because he won’t let anyone no where near him, without kicking and flinging himself in pain resulting in me being covered in bruises. He’s missing too much school, and I can’t physically watch him in pain for another day it’s absolutely killing me off

what else can I do or try??? I will try anything. I know a lot of kids suffer with it but I’ve never seen anyone this bad, even the bath with no soaps in is making him sick with screaming in pain

I’m going mentally ill off it now done nothing but cry I’m drained in all ways and just really need some sort of advice from someone, never felt this broken 😭😭😭

[Yaleamanda]

Have you disimpacted him? What dose is he on? Are you also using a stimulant to help?

[Laurencharlx in reply to Yaleamanda]

yes, we went through all that months ago. His dose dropped from 6 to 4 sachets a few weeks ago, and all of a sudden it has started again. Nothing but movicol I feel like the doctors are just fobbing me off

[Beatrice81]

I'm sorry things are so difficult right now. Make sure he has been fully disimpacted and your toilet routine is productive. If he's on a maintenance dose of Movicol but still soiling he might need a stimulant like sodium picosulfate to help him fully empty his bowel when he uses the toilet. My 6yo has been in the same situation and I've had to clean him with wet cotton wool on a baby changing mat when things have got to red raw and screaming stage and a bath/ shower was too painful (sometimes letting him watch tablet to distract and stop flailing limbs). Metanium cream has been a lifesaver and works miracles to help heal overnight.

Speak to your GP about adding stimulant medication.

Wishing you lots of strength: you are not alone and please know this stage will pass. Take a minute to yourself and get away from the situation when you can; it can feel terribly overwhelming but it won't always be like this. Look after yourself x

[Laurencharlx in reply to Beatrice81]

thank you so much. It really is the worst thing I have ever dealt with. I just want him to have a normal life like any other 5 year olds. It’s so hard to watch. We are at the doctors once again this afternoon so I will mention the cream and maybe adding another stimulant. Thank you x

[Beatrice81 in reply to Laurencharlx]

I hope your doctor's visit was useful. Mind you can get Metanium cream without prescription.It's all really tough to deal with but it becomes easier when you've settled into a managable routine.

If you haven't already: put a care plan in place with school. Speak to your school nurse and get other staff on board so you can get as much help as possible during the school day. If there's an opportunity to get him changed at a set time at school (e.g . after lunch) this will likely reduce soreness.

[mumbychoice]

I am so sorry to hear how awful it is for all of you. For us changing to Senna rather than movicol has been a game changer, as it is so much easier to get into my daughter and therefore easier to change the dosing. We feel like we have been let down by all the medical specialists for the past 4 years, but this summer we were finally referred to Bursledon House at Southampton Children's Hospital. My 8 year old was there for 3 weeks and they sorted out her dosing (they only over use Senna, no movicol) and it has been a huge game changer, also in terms of her motivation. We also now finally have a gastroentrologist who takes us seriously and catches up with us every 2 weeks and we can phone at any time. Just having that access that has changed out attitude and relaxed us hugely!

So in summary: push to see a different consultant! We tried for years, in the end my husband and I went to an appointment without our daughter and refused to leave until they gave us a way forward. In desperation to get rid of us the gastro referred us to the residential stay and we have now been able to change to the gastro that saw her there (and who our daughter has a relationship of trust).

Good luck!

[Natster90 in reply to mumbychoice]

sorry to jump on but as a mum of a 9 year old who has been dealing with this for 6 years I just can’t cope any more. We currently give 5 ml of pico sulfate and 3 sachets of movicol a day, still sloppy poop and still soiling. How much senna did you use? We were disimpacted in hospital a month ago then reduced her dose down but losing hope

[mumbychoice in reply to Natster90]

The hopelessness is just so awful and the feeling that nobody is helping is so soul destroying (fot us and the kids!)! So, my daughter is on 30mL and 15mL Pico daily. In the experience of the gastro we see, the highest dose of Senna is 30mL, after that it doesn't really do anything, hence the addition of Pico.

My 3 year old son also clearly has the same issues, but we've caught it earlier, as we understand what is going on and we knew which consultant we wanted to see, so hopefully he will never get as bad. However, he is also on a maintenance dose of 25mL a day! Sounds a lot but we are finally getting somewhere (though my daughter is sick of having to take all this medication, but it's a million times better than movicol!!!!)

Good luck!

[Yaleamanda]

How quickly did you reduce the doses down by? Did you reach watery stools with no lumps consistently for a few days before you started reducing? Have you added a stimulant to the regime?

[Laurencharlx in reply to Yaleamanda]

No, none of this was explained proeprly to me at the hospital. I’ve had the nurses come out today and explain this all to me so hopefully starting again will work

[Skyfullofstars1]

hi, been there too, it’s awful and takes over your life 😭

I see someone above mentioned metanium cream. It’s the absolute best. I still carry one with me where ever we go incase it starts. I also still wipe my 8 year olds backside 🥴

She showers every morning and we use QV soap. We are in Scotland and get it free from any pharmacy.

Are you doing the sit for 5 /10 mins after meals?

Also to beginning with I would check her after school to make sure she was clean and dry. I found sometimes she wouldn’t say and I’d only notice at bed time.

We have always had to mess around with the dose and reduce very slowly.

Honestly it will get better I promise you. Just keep doing your best.

[Laurencharlx in reply to Skyfullofstars1]

hi thank you! It’s so nice to know I’m definitely not alone in this. I have bought some cream today, the same as you’ve mentioned but they only had the spray on barrier cream, not the yellow box ointment. So not sure if it will work the same. Had the nurses come out today and we are on a 3 month waiting list for an incontinence specialist. It’s going to be a long wait x

[Skyfullofstars1 in reply to Laurencharlx]

the yellow one is the best one try to get that one, should be able to get it from a pharmacy. If it’s started going backwards from when you reduced the movicol could you increase it again? Three months is a long time to wait 😭. All you can do is do your best and clearly you are 💖 and keep phoning doctors/ nurses etc asking for there help. It took us 2.5 years to get the help we needed and now 3.5 years on we still take medication daily and the effects of that time are still here- enlarged bowl, recurring UTIs , bed wetting. But little by little we are getting there and you will too 🥰

I bet we could talk about poo all day long 🤣 I said if I was on a quiz show my special subject would be poo 🥴

[Rainbow425]

Hi, hope things are improving a little for you, it's awful seeing them in pain isn't it 😞 just a quick one on the cream, my daughter also resists having it on so in use a really soft tissue with a bit of vaseline on and dab carefully rather than wipe, I find vaseline works best for us as it provides that barrier and helps poos "slide" out! Also she loves mini cucumbers which always seem to help things along and we try and avoid cheese as that makes things worse. In bought the soiling pants from here and they help too as if she does have an accident they pull away the moisture and help keep her skin dry. Good luck with everything.

[Dawn12345]

I am literally in your position although my daughter who is 5 is on different medication. Phoned the doctors and they are not much help. The ERIC website had a webinar tonight which was fab and I actually recently had a 1:1 call with them. Disimpaction and then maintenance seems to be the answer! X

[Dawn12345]

also zero base cream in warm water with cotton wool has been our saviour. We had to have a fungal cream to help her bottom heal x