Chronic Constipation Frustration

[Lktoday]

Hi all,

Think I may have posted a long while ago but can't find my original post.

I'm a single parent to a 10 year old boy with long standing chronic constipation. By long standing I mean since he was 4.

We're under a paediatrician, paediatric gastroenterologist and have seen a psychologist for years. We've had a break from the psychologist but I think we will be restarting.

Currently he's on 6 movicol a day and 10ml dulcolax. Every so often I'll do a disimpaction with picolax.

He is soiling on a daily basis, often 3-4+ times a day and cleaning his underwear is exhausting!

The trouble is, he just doesn't seem bothered by it. Tried incentives, rewards & charts, I've ended up in tears many a time. Unless he's policed, he'll often go into the toilet and not actually sit on it and I end up at my wits end over it.

He has regular contact with his Dad who doesnt always maintain his medication. The paediatrician has offered him Peristeen which he has tried but doesnt like using it. She's told him that's his best bet at having a 'normal' life but he doesnt want to do it.

I'm concerned that he will be going to high school September 2018 and don't know how we'll manage and how it will affect him. Above all else, I'm tearing my hair out and very weary from it all. Sorry to ramble on and thanks for reading if you got this far!

[luna2017]

Hi, sorry but I can't offer much advice on this as my son is only 4.5 and although he may be suffering from overflow, his poo symptoms are manageable. However this post caught my eye as my sons behaviour is very similar when it comes to going for a wee, he just isn't bothered by it all either. Sorry I can't offer any help but I'm going to follow this post if that's ok incase anything comes up that can help us. Big hugs x

[Lktoday in reply to luna2017]

By all means...I had wondered if things would change when it was affecting him socially but that doesn't seem to worry him which is good in one way but doesn't serve as a motivational factor.

[luna2017 in reply to Lktoday]

Yes it's difficult to find motivator. I've tried stickers, reward charts, actual rewards (a new toy at the end of the day) nothing really seems to excite him enough. He wanted the new toy & seemed to understand how to get it but after having lots of accidents, he didn't seem to realise why he hadn't got the prize. ...I know that approach may sound a bit harsh but it was more of a test really to see if he actually understood what I was asking of him. Do school have an ICP in place for your son?xx

[Lktoday in reply to luna2017]

No school havent been particularly proactive until recently and its tough to balance as he will sometimes use going to the toilet as a reason to get out of things he finds challenging. I have to say, in general, the welfare ladies have been pretty good at gauging when he's genuinely unwell vs just trying to get out of something he doesnt enjoy. Nevertheless, it has only been the past few months that one of the pastoral type teachers has actually sat down with me to try to get a better understanding of his chronic constipation and his needs. It has hugely affected him socially and confidence wise.

I'm reading a lot on here about Senna vs Movicol and senna isn't something we've tried so it might be worth exploring. I work with GPs so its nice to have empathetic employers but even work are fed up of me going on about it! Hence why I've come on here as others know where I'm coming from and how frustrating and emotionally exhausting it all is!

[mummynev]

I'm sorry to hear of your son's ongoing problems. We have a 12 year old with similar bowel problems along with daytime wetting etc, he has been on Peristeen for over a year now, once a day in the morning and it has massively improved his quality of life, he tends to stay clean (although not dry) at school most days which is a great help now he's at secondary school. How long is it since your son tried Peristeen? Do you think he might give it another try if you leave it for 6 months or so? Our son wasn't keen on the idea at first but he started around 11 years of age with the start of secondary school 4 months later, he quickly began to see the benefits of being clean during the day at that age so maybe another few months might make the difference to your boy? - not much comfort to you though at the moment.

I know how mentally and physically exhausting it can be, 10 years after most children are potty trained we still carry a full changing kit everywhere we go. I've had years of old ladies tutting at us when we've had to use the disabled loos, of other parent's looking pityingly at us when it's obvious our son has wet himself in public and of defending our boy's hidden disability to those who think he's just being lazy (including, I suspect, some members of our family!).

I wish you all the best and hope you manage to persuade your son to give Peristeen another go before he starts secondary school.if you don't think you're getting anywhere with your current medical team could you ask fora referral to a tertiary/specialist service like the Evalina Children's Hospital bowel & bladder clinic or somewhere similar?

[Lollypop1 in reply to mummynev]

Hi sorry am new to this group but I just read Ur do peristeen did u find it easy am starting this tomora with my 5 year old after 5 years of trying every meds enemas Botox etc this is our last option now before a stoma bag my nerves are all over the place school arnt very supportive with soiling himself school nurse is telling me he's to deal with his own cleaning n care at school just after some advice plz x

[mummynev in reply to Lollypop1]

Hi,my son was older when he started , almost 10 years old. We found Peristeen much easier than we imagined and it really is a game changer in terms of quality of life. My son was soiling every day and wetting several times a day, we do Peristeen before breakfast and it keeps him much cleaner at school, it means an early start as he's on the loo at 6am s he has to leave for school at 7.20 but it's definitely worth it. Good luck with your little one, persevere if you can. You are always welcome to contact me.

[Lollypop1 in reply to mummynev]

Aw thankyou Hun these early starts are such a night mare as he has nocturnal asthma exercise induced and weather change so he's up most of the night with this too we can't win so am hoping evening wash outs are best for us but hopefully the nurse will lead us along X. She due tomora will she show me how to do it then my do it to my son while she observed etc or leave and I do it as I don't want to be alone first time x

[Laundrymaid]

Hello, thank you for posting this - I was moved to reply! My daughter is 11 and had suffered for constipation nearly from birth. We have currently had a difficult period of soiling followed by UTI's. I think she is on the mend but as you all know it is slow progress.

What spoke to me in your post was your frustration that your son does not seem that bothered by what is happening with his health and this is very much our experience too. While I raged and yelled and battled against the situation she seemed to withdraw from it completely, ignore it and act as if what was happening was outside her body. Nothing of which seemed logical to us. But the more I read about these kids, and blogs written by adults who have grown up dealing with similar health problems, the more I understand that this indifference is just a coping mechanism.

I really hope that things improve for you and your son soon.

You are not alone! 😃

Stay strong, from Laundrymaid xx

[Lktoday]

Thanks so much for your replies. Laundrymaid, I think you're right that his indifference is a coping mechanism and I actually think deep down he's really affected by it, which breaks my heart even more.

He finds it really difficult making and keeping friends, school are having a week's PGL next year and I just can't forsee that he'll be able to go to something like that, it might've really helped build his self esteem.

I do hope he considers the peristeen and its something we still have so we can explore again. He agreed to discuss with the peristeen nurse again but talking and actually doing it are 2 different things. I am going to talk to the paed about trying senna though as some people seem to have seen success with it.

A difficulty we've experienced is that its not immediately obvious how constipated he is, even the paediatrician missed it initially and the extent only came to light after he had an xray. That makes balancing movicol all the more difficult. Sometimes his tummy is so distended it must be really uncomfortable but he rarely complains about it, bless him.

[Luella19]

Although my daughter was 6 at the time, senna being prescribed by a consultant is what turned things around for us and slowly got my daughter out of regular soiled pants. She is pretty much soil free now. I think the senna gives them more of the urge to go and helps clear the bowel better than just using movicol x

[bluecow in reply to Luella19]

Appologise for jumping in but can I ask Luella how much senkot do you give and how often x

[Luella19 in reply to Luella19]

She was prescribed 5ml per day for about 8 months every evening. We were told to keep using movicol too and to play around with dose of that (we ended up on 3/4 of sachet per day and then down to 1/2 per day) we weaned her off the senokot by reducing to 2.5ml per day for further 2 months. Now she takes nothing but have been told to use senokot occasionally if needed, which hasn't really been needed. She has been off all laxatives now since about March and doing really well. X

[Juel1]

Hi I have a 10 year old daughter who uses peristeen every day it's a bit daunting at first but it is brilliant it keeps her clean and it's so reasuring when she goes to school or a friends house. Good luck x

[Lktoday in reply to Juel1]

Thanks Juel1, how did you persuade her to use it? Or was she happy to try it out?

[Juel1 in reply to Lktoday]

She started off with qufora which is a small pump, we also found this effective but we were advised by a different nurse on using peristeen, i find both good. It may be worth starting off on the smaller qufora as an introduction.

I think maybe for my daughter she was already using self intermitten catheterization because her bladder can't fully empty on its own so that was alot tougher for her.She hated using the peristeen at first but now it's her morning routine and she does it no bother.She also takes one satchet of movicol at night.

[Tiera]

Hi, my son had chronic constipation for years and was on big doses of laxatives from GP. Removing lactose from his diet cured his constipation and last year he was diagnosed with Coeliac Disease. His first gluten antibody test was negative so I had to push the GP to send him for another blood test which was a high positive. GPs and paediatricians are unlikely to stumble on the right diagnosis in my experience! Just an idea to try if you haven't already.

No more constipation. I hope things improve for your son.

[Lktoday in reply to Tiera]

Thanks Tiera, anything is worth trying though we had him on a dairy free diet for 6 months and made no difference whatsoever. He's also been tested 3 times for coeliac and various other causes as well as having a colon biopsy. My understanding is that some coeliacs are only positively diagnosed after a duodenal biopsy. He doesnt have any other features of coeliac and is under a dietician. I will discuss with the paediatrician again though- worth checking. Thanks

[Tiera in reply to Lktoday]

No problem. Children can have Coeliac despite the blood test being negative . My son's villi was not damaged at all but he still received a diagnosis of Coeliac. He didn't have typical symptoms of Coeliac either but I knew to suspect it because I have a family member who has it. I discussed my son's ill health with many paediatricians and one of them was quite rude and others dismissive when I kept bringing up Coeliac. He was only diagnosed when 18 and in adult services.

There is also Non Coeliac Gluten Sensitivity with similar symptoms to Coeliac but the tests are negative.

[Bellab1]

Hi

I am a chronic sufferer and don’t usually use forums however I have to advise that after many hospital treatments and impactation x rays and scans and straining I have found something that is a miracle worker you can buy more expensive brands, which I have no need Aldi one is just as good it’s cheap under 3.00 it’s called milled (must be milled) linseed golden omega. By harvest morn you sprinkle on anything has no taste so can be used on any food in tea drinks anything it is absolutely amazing I was on 10 movicol a day with a laxative and saw some very expensive specialists and I can honestly say you have to try it!!!!! Aldi online try it I used it had 4 tea spoons 2 morning 2 night after 10 movicol for a week daily and nothing left it and used this and the next day passed a stool it’s amazing stuff