Boy with bowel trouble

[Mdeb]

When my little boy was only 2 he was admitted to hospital with suddden weight loss which transpired to be related to constipation . He had suffered from this since he changed to food diet post breastfeeding . He was started on movicol and this has helped . He does not seem to know how to go to the toilet and is only going because of the movicol . He is on 1 adult sachet a day for the last year ( he is now 5) and was advised to stay on this until he is 6. He recently started school and has started soiling again but is also complaining that his poo is too soft and is coming out too fast . I reduced his Wednesday and Saturday dose last week to a paediatric dose to try reduce it a bit and his poo became formed ( its usually like soft mushy pale ) & darker in colour and immediately as soon as it was not soft and thin and bitty he complained straight away that he was in pain , ( it wasn't too hard looking )

Ds has never had a barium , an X-ray and I often wonder if anything is missed for him - is there poo inside or not now ? Is he on enough / too much Or is this overflow again ! It's a nightmare . Given his recent soiling the kids in after school are now teasing him again and calling him 'smelly' I can only imagine this will make him worse and I haven't a clue now if it is increasing or decreasing the dose I should be doing !

He has fiber fruit fluids drinks loads of water etc but still the same problem

At the first sign of even a slightly formed poo he immediately says he is in severe pain - does he have a tear ? should I be looking for an examination under anaesthetic for him ?

I really feel that the medical profession don't have a clue about this , until you are the mom who tried to get a large hard poo out of your babies bum and held them as they cried in severe pain I really don't think you can learn this from a book or class. I really don't think the support is really there for parent and their children with this .

I want to know why this is happening to him , why I can't take him off this medicine , why I never know what is really going on with him and it really is like treatment in the dark

If there is anyone heRe who can help me and my son I would be really grateful .

How can I stop failing him and help him to overcome this ..

The movicol also seems to make him pee loads and at night he is sweating so much and I also can't get him dry at night . I am now considering an alarm is this the right move . .?

He was in Scbu. for the first week When he was born as he didn't pee for 5 days the first 5 days - does this have anything to do with it ?

Why is this happening to him - our diet in the family is good , the boys are great eaters and drink loads and are so active that they never sit still but this child looks pale and weak and thin and this issue looks like it will never stop !

Any advice at this stage is welcome ! Thanks

[AliStan]

Hi, I don't have any answers as my daughter has bladder but not bowel issues but when I read your post my heart went out to you and one sentence stood out so I just wanted to reply to say you are NOT failing him, everything you say shouts the complete reverse, so please try not to beat yourself up and try to stay strong!

I couldn't agree with you more though that this is an area that is so poorly understood and until I found this forum I really felt we were just battling alone as it took us years to find the right professional help.

The only thing I would suggest is not to try and fix too many things all at once. I really wouldn't worry about the night time, if you can find a way to contain it then personally I'd focus on the day time issues first which sound challenging enough. We did that, using pull ups at night to save on wet beds and washing and as the days have begun to improve, so night time also seems to be getting better! If it hadn't then we'd agreed (both myself, my daughter and the consultant) that we'd tackle that next. Unfortunately these problems do take time and making that decision took just one element of stress out of our lives.

I know there are a lot of people on here who share your experience or at least similar ones and I really hope one of them can give you some advice that helps you both. I wish you both all the luck in the world. xx

[Littlecabbage]

As the previous commenter said, I am only familiar with bladder issues, but wanted to try and help if I can.

My understanding is that there ARE medical professionals who are very knowledgeable about such issues, but that they can be hard to find.

Are you under consultant care at the moment? Is it a specialist paediatric gastroenterologist? I would fight to get referred to someone suitable if not (preferably at a specialist children's hospital). You should not be having to try and solve these problems by yourself and you deserve to see the correct specialist.

And I agree, you are NOT failing him. You are doing everything you can but I don't think he has been offered the correct professional care yet. I agree with you that he probably needs further diagnostic work-up. Good luck.

[Luella19]

Hi there, my heart goes out to you too, it's such a tough thing to deal with. I mirror all previous comments, you are not failing your son. You are doing your best but I agree you would both benefit from specialist help. If you haven't already push for referral to paediatric consultant. We finally saw one when my daughter was nearly 6 and made a huge difference, like a weight lifted to finally be understood.

Your son is still very young, for us age has helped tremendously, my daughter is now 7 xx

[Mdeb in reply to Luella19]

Thanks Luella and all others

I appreciate your feedback !

My son has been seen by a paediatrician ( gastroenterologist) but sees him yearly now and in between things can change so you do feel very on your own trying to adjust doses etc

He also has been admitted to hospital , they thought his issues might be related to brain tumour ( clear thankfully ) , short bowel syndrome , coeliac , inflamm bowel disorder and many others and after 14 days felt maybe chronic constipation with encoparesis affecting diet ( hence weight loss ) and he is on movicol since but when you go back yearly for 10 mins I still think it is hard to try get all the info you need to really be able to manage on your own

To be fair however he has been great since last Nov and dose has been fine , it is only starting school has knocked him off again and his friends starting to call him smelly and pooey again it's like going back 2 yrs ( hence the rant last night I think ! )

Re night time dryness , I am fine but he is really asking to come out of pull ups coz ' he is big now' I tried it for 4 months and it was 2 bed changes a night or lifting him 2-3 to keep bed dry but I have ended up so tired I had to ask him to take back the pull-ups ( so mommy could get a little sleep for a week ) 😕

i am sure I will figure this all out and we made a plan with spare clothes and pants going to school & after school today so he was very happy to have a plan to deal with 'accidents' in school .

Hopefully teasing will stop and he will get confidence back again and that I can sort the dose out to help him !

Thanks again to you all for taking the time to read and comment , it was much appreciated

M