Four year old with chronic constipation for two years

[Rose0305]

My daughter has been struggling now with constipation for two years. I feel so alone and stressed out with the situation as never seen or heard anything like it before. It first started with my daughter not wanting to poo on the toilet or would withhold whilst at school and would soil her pants occasionally. The soils then gradually got worse until she was coming home with multiple bags from school a day and would soil her underwear multiple times at home. I tried all the usual things of reward charts and sitting on the toilet but nothing worked. She was diagnosed with constipation and under children's nurses who put her on movicol. The medication just turned her stools to water so the soils would be worse and very loose so I took her off the medication for a few months and nothing improved and doctors put her back on the laxatives saying the loose stools was due to overflow and that she was still constipated!!

She has undergone a disimpaction regime in hospital recently to totally clear her bowels which it did but again she did not pass another bowel movement for over a week after and then started with the watery stools again but the advice from doctors is to keep her on the laxatives! I'm at a loss with this now and I just want to help her but don't know what to do for the best. She misses a lot of school and always has stomach ache. Anytime we leave the house we are armed with a ruck sack of clothes and this is embarrassing for my daughter and is causing her emotional stress in social situations especially and dread attending children's parties or days out with friends. I feel like I'm just left to get on with it by professionals and am sent to visit a children's nurse every other week which just tell me to give her more or less movicol depending on her symptoms. I don't know whether my daughter has lost all bowel control completely now and doesn't have any sensation anymore.

Has anyone been through this before. I feel like don't know where to turn!

[Robinia]

You’re in the right place 🤗 plenty of us have been struggling for years (that might not be what you want to hear!) there is loads of excellent advice on this site. From what you’ve said I would think the priority is to work out if she is currently impacted. Look for the poo nurses video on the Eric website. A good doctor might be able to feel if she currently has stuck poo. It may be that she needs another disimpaction week with movicol (which you can do at home) and which you will only know has worked if it gets to the point where brown water is coming out. Then she may need a relatively high maintenance dose (3/4 sachets) to start with which you can then taper down very gradually. She may also benefit from Senna on a daily basis. It is a really tricky issue to work out if the soiling is overflow or due to

The dose of movicol being too high or due to muscle/nerve damage. I would try to find a good GP who can support you with the medication angle. Many of us have found they need a stimulant as well as a softener. Some children benefit from micro enemas or glycerin suppositories but best to try things under the guidance of a good GP. I recommend pads in the pants every day and a changing bag. It’s really important that life doesn’t revolve around poo too much. My son is 10 and you cannot underestimate the mental impact incontinence and severe constipation have. Keep fluids as high as possible, Daily sitting on the loo regime twice a day with a stool, lots of positivity and rewards, finding other parents who understand are all Things that can help. For me, it’s been a great help to feel less alone and talk to people who really understand. Good luck and keep posting 🤗

[Mandy7 in reply to Robinia]

Yes totally agree with Robinia. The problem may be that her bowel was so stretch when she was originally constipated that the nerves have lost any sensation. Therefore she can’t feel when she needs to poo. The idea of the laxatives after disimpaction is that it keeps the stool really soft so the nerves don’t keep getting pressure and they can heal. It can take months and months for the nerves to heal so it’s important to stay on a maintenance dose. could be 6 months could be a year or more. It’s a long road! We were doing the same thing about a year ago and I was like you and thought this is silly the laxatives are making it worse! I took him off them and then of course he got constipated again and it has been a massive struggle to get him disimpacted again. We did movicol, dulcolax, suppositories and enemas daily. We had x-rays to be sure he was empty then we tapered back his movicol. We are far from right though. Now dealing with what I believe is his mentality about it all. I think he’s just accepted this is his life and he’s lost any desire to fix it.

[Allyem1976]

We are all here to help you and support each other.

It is stressful for everyone involved. The comments are correct on here. We all struggle with managing this condition.

I never know if my daughters accidents are because she's lost control or sensation or whether it's overflow cause she's impacted again.

We have been managing this for 3 years.

Relations between me and her dad (My ex) have got worse due to the condition. He cannot cope with it which makes her visits to him stressful. The emotional stress is very evident.

My job is to support and protect and help her manage this so that it does not impact on her life. It's tough but we are getting there.

We have been on disimpaction this week. Half term of all times to be impacted! People do not understand how it effects their lives. Socially too. Not being able to go far in case of accidents or vomiting. I remember a trip to Chessington last year and she started vomiting cause she couldn't poo! Just completely ruined her day.

So disimpaction done. Poo is out. Back on maint dose of 4 a day. Will reduce now to 2 morning 1 3/4 evening. Then down to 2 morning 1 1/2 evening until it's a formed movement not mush or liquid.

It's trial and error I am afraid. Be aware though that each change in dose does not kick in for 3 days I think so you need to do a change for 3 days then reduce/increase. I have a chart to keep track if what I am giving. Also a food and poo diary helps especially when she is away from home.

Please contact anyone of us either on here publicly or privately through the messaging.

We are all here to help each other.

I don't know what I would do without it xxx ❤❤❤

[Ivana0848]

Hi it is same with my daughter we took her to GP at preschool age he told us that it's normal and lots of children have it and put her on movicol and appointment with pediatric at our local hospital she's now 10 and nothing has changed it's very stressful as she keep refusing to drink the movicol the nurse give me an advice to put her on whole grain diet plenty of fruit and vegetables I buy for her the 50/50 bread and pasta as she won't eat the whole grain the nurse also told me about this website I just vish to be told about this website earlier as I don't know anybody with this problem and it can make you feel lonely if you don't have anyone to talk about it I hope we are going to manage it before she starts secondary as she may get bullied. Ivana

[Rose0305]

Thanks all for getting back to my post with support and advice means a lot to have people who can relate to my situation as not many do...

My problem at the minute is she seems to be soil free for about two/three days and then she will pass lots of movements throughout the day which are loose for about three/four days after and it's like a cycle then that keeps repeating. We was at the Nurse on Wednesday just gone who advised to keep her on two sachets a day, one in the morning and one at night. I explained that her stools were loose when she passed them and didn't seem to be forming but the Nurse advised that two sachets was not strong enough to cause the runs and it would be her condition causing the loose stools and in time they would start to form again. Sadly, I feel like my daughter too has just accepted this is now a normal part of life and doesn't seem to want to use the toilet at all and will always just soil her trousers. I'm feeling nervous about school starting up again on Monday as I too worry about bullying and the other children picking up on the situation at school.

I'm really sorry to hear how you have all been struggling with this for a long time and it is an awful condition for the children and the parents to cope with. My ex partner too is not very supportive as we are no longer in a relationship and he doesn't really play an active part in medical appointments etc. Sometimes can just feel abit isolated and alone dealing with it all but thank you all for messaging.

xxxx