to reach out to folk with children who suffer chronic constipation?

[Totality22]

Sorry I know it's technically not an "AIBU" but on the squash thread I noticed a lot of parents who mentioned their child has / had chronic constipation and I need to some help and support.

DS is 27 months and has had chronic constipation on and off since weaning.

At the moment he is going through a really tough phase - poo'ing maybe twice a week and finding it incredibly painful to go [took him 3 hours to pass his last poo and lots of tears / upset]

We're nearing potty training age and I am scared this is going to hold him back.

Please can any parents of constipation sufferers share your experiences - how you cope / how you managed to potty training etc.

For information DS isn't on medication but was given a course of Movicol at 13 months, when it finished the GP wanted him to go it alone. We had a period of relative "ease" for a good while but now we're back to full on, horrific constipation. DS is incredibly fussy with food at the moment and I know that is the direct cause but nothing can persuade him to vary his diet? I beg, plead, force, reason, bribe to no avail.

Seeing GP on Monday (just moved house and had to sign up to new GP.. I also have a 5 week old baby so have been a lot more lax in the "healthy" dept and we've all been eating a bit more crap than usual)

Hi, she drinks a bout 4 cups of juice at home and drinking bottle of juice a nursery and about 3 cups of milk (loves her milk)

Just been reading about Hirschsprung's and it is usually from newborns? She wasn't this bad when a baby. I dint remember her being constipated as a baby. It's really been about a year and a half maybe 2 years.

Probably not Hirschsprung's then. It is generally present from birth, which is why DD was checked for it (she was constipated from about 4 weeks old).

3 cups of milk (loves her milk)

DS's consultant said we should reduce his milk/dairy intake and that 1 glass of milk a day was plenty, although he was about 3 1/2 at the time.

Flippy, was she breast or formula fed? Could it possibly be CMP intolerance?

She was born at 34 weeks if this is any relevance?

Sge was breast fed for about 6 weeks till I found out I was pregnant again and was on formula from then on.

I have reduced her milk alot, I used to give her lots as she just doesn't eat, she isn't fussy at all but can only at a small amount before she is full and her tummy hurts so I no limit small cup with her breakfast a small cup after nursery and some when she goes to bed.

I honestly can't remember her having problems with her poo as a baby , I said that to my mum and she said obviously if she did you would then remember.

She was very poorly in hospital about 2 years ago with viral meningitis, she literally had to learn to sit and walk again while she was in then and I remember talking to them about it then and we tried the laxatives like sena etc and went on from there.

I also have other children who do not have any issue at all like this.

Also should mention I took dd to doctors and she had a bulging lump in her bowel where she hadn't been and it frightened me she also again had a tempature, doctor was amazing and said to go to a&e to try fast track an app. This is when they took blood and realised she was anemic. She had blood tests before and was fine then.

She had the xray and it showed she was loaded, told to try Movicol and with an app with pediatric for a few weeks later.

Pediatric was useless she was so scared I think from being in hospital with menigitus when she had to have numerous blood tests and lumbar puncture she didn't want them to touch her, she was more concerned saying she had "behaviour problems" because she wouldn't have her blood pressure done that she was in her poo problems.

She told me to continue with Movicol (even though hadnt help 1 bit so far) which we did and told me to check in with Dr after a month or so. We did and then told to try lactolose, this gives her a huge exsplosion every 7-10 days and that's it and she is on a high does

How much Movicol was she having? With severe impaction you need to do the impaction regime, which is a gradually increasing dose every day up until you reach eight sachets, and back down again to the maintenance dose (whatever that is for your child). If she was only having one or two sachets per day, I can imagine that wouldn't have much effect.

*DISIMPACTION regime

She was up to 8 a day. She wouldn't drink a full 8 cups a water a day so I made them with small drinks like a beaker full so 8 small beakers with it in.

She has also the innocent fruit smoothies and fruit pots (like the ones toddlers have) and those fruit pouches, these practically fill her up. She really can't handle too much in her tummy at all.

I know, it's hard getting them to drink that much liquid (mine will drink three cups a day max). You need another opinion though. Lactulose really isn't appropriate for severe cases, and the fact she only goes every 7-10 days kind of proves that.

Exactly my thoughts.

I'm so sick of them taking them time with it, I no it's not like or death that she deserves to jump the question but the poor child is suffering!

I can't re7meber the last time we had a good night with her she is exhausted and looks it.

She is very gassy as well.

It may not be life or death, but chronic, badly managed constipation can be very difficult to treat and the bowel damage can be lifelong. I was one of those kids, got next to no appropriate treatment and my bowels will never be normal. Unfortunately, it took me until I was 32 to find a medication that worked for me, by which time I'd suffered for decades. I used to have to cancel days out as a teen because I was so badly constipated. My 20s weren't much better. This is why I'm SO determined to make sure my DD doesn't suffer like I did.

Just sounds awful! I have never experienced it at all, can only imagine just how horrible it must be.

I'm going to call my gp in morning see if any news yet. It can't go on like this.

I'm considering taking her private

Our DD is now 4 and started withholding at around 2, which led to faecal impaction and constant "overflow" (soiling). GP prescribed Lactulose (did nothing), then Movicol, which sort of worked but was difficult to administer snd seemed to add to her discomfort.
I suggested possible food allergies to the GP but just fell on deaf ears.
We took dairy out of her diet and things improved, the soiling stopped, she was on 2 sachets of Movicol a day but still only went once or twice a week.
All of this stopped when we removed gluten from her diet. No more constipation and a much happier child with much improved sleep as a bonus.
CMP and wheat allergy now confirmed by private gastroenterologist.

I've also got a stool holder, took 3 visits to gp before we finally saw the doc who knew what was going on. dd who's 6 has been on a movicol regime for over 2 years now and those dark days are over, for her its the fluid intake that causes the problem and she is a faddy eater too, some days I was in tears with it, nowadays we rate the poo at every visit and administer movicol accordingly, I've become an expert in poo lucky for us the holding didn't start until after potty training, so at least we didn't have that to contend with too. ours started when she was constipated and passing rabbit droppings, then they built up to a hard poo that hurt so bad she tried never to go again, if we had known what was happening we could have avoided the whole thing, so if anyone has a toddler with rabbit poos, sort it out as soon as you can don't wait, its bloody heart breaking having to give your screaming child a suppository.

Oh, us too - only we're just at the start of getting medical help.
DS2 only ever pooed once a week at best from being a baby. He was on lactulose on and off as an infant.
He potty trained at 2.4yrs and was dry instant but poos were a constant nightmare, especially what I now know was/is overflow soiling.
GP always said he was still young to be potty trained and I was expecting too much but I'd prescribe Lactulose which did nothing to help.
Finally got a prescription for movicol 2 weeks ago (he is now 3.7yrs) and it's made such a difference. Poos every 2 days or so and he even told my mum yesterday that his poos are not ouchy anymore.
The only way to get the medal in to him is in milk with one of those flavoured "milkshake" straws. But it works.

Thought I'd share our experiences as well.

DS (now age 3.5) has been terribly constipated since he was about 9 months. The GP initially said to just up his water, fruit & fibre content, but it wasn't enough. By 1.5 he had a real fear of doing a poo - held it in for days and got terribly distressed.

I went back to the GP at 1.5 and he's been on movicol ever since and he is so much better now. It took about a year for him to relax and stop holding in, but he is now happy to do it and is pretty regular (daily or every 2 days). He takes in in apple juice at breakfast time.

Toilet training was difficult though. He still refuses to use the toilet to poo and asks for a nappy to do it in, but I'm sure that will come in time.

Good luck at the doc today.

Hi, another one with a withholder. DS is 3.6 and has been On Movicol for around 6 months. I first noticed a problem when starting to potty train about a year ago. Poor DN had been through this so I could spot the problem relatively early. He will not poo on the potty or toilet, only in pull ups but is fully trained despite this issue. I would also recommend a book called, Constipation, Witholding and your Child which I got on Amazon. It addresses the physical but also psychological aspects of why some kids withhold. It really helped me understand our DS better. Also persevering with the Movicol and getting the dose right can be a difficult process. We stop/started which was bad but now seem to have nearly cracked it. Sorry for everyone going through this.

I don't really have any words of advice but just wanted to say I would really try and tackle it before potty training.

My Ds had terrible constipation and would hold on to his poo for a week or more. It caused him so much pain. Even when he wasn't constipated he still held on to it through fear of passing it.
He was 5 before I poo'd in the toilet, he would insist in doing it in a nappy.
Even now he still holds on to it for about a week but he gets less anxious and worked up over it.

I never found a cure for it, we got given medicine but he wouldn't take it.
Then the problem became a psychological problem rather than a physical problem.
Now it's just a case of giving him time to over come his anxieties.

So sorry not much advice to give, other this it won't last forever x

I urge you to insist on a referral to a gastro specialist. It absolutely sounds like Hirschsprungs to me, but short segment which can often go undiagnosed at birth because the part of the colon affected is too small at that point to cause major constipation. As the child grows, so the does the diseased part of the colon and thus constipation and impaction become chronic. The swollen belly, the use of pessaries, everything you describe OP - this sounds like Hirschsprungs to me.

The problem is that many GPs rely on the assumption like a poster upthread mistakenly said that it is only diagnosed at birth. Nonsense. So they treat it with Movicol and Lactulose which do NOTHING and then look at dairy allergies etc.

The reason I know this is because I have been through all of it with one of my DC. I gave up with my useless GP and self-referred privately in the end. I am so glad I did because the consultant took one look at my child (3 yrs old at the time) and admitted them there and then for emergency surgery two days later. Two years on DC is absolutely fine but it has been a long road, and I have only just got over my fury with the totally useless GP.

I'm not saying your child has definitely got Hirschsprungs but I felt it very important to share my story because we had a late diagnosis after years of chronic constipation and impaction that almost led to enterocolitis. We were so, so lucky in some ways.

I wish you luck, but please please please be insistent, I felt like the annoying paranoid Mum but I am so bloody glad I was because when it's something unusual you have to be.

The problem is that many GPs rely on the assumption like a poster upthread mistakenly said that it is only diagnosed at birth. Nonsense

If you're takijng about me, I didn't say that Hirschsprung's is always diagnosed at birth, but that symptoms are usually apparent from birth. The surgeon we saw when DD was a baby was very interested in her bowel movements after birth and in the early weeks. Did she pass meconium within 24 hours? What were her bowels like during the first month? Etc.

To have ostensibly normal bowel habits until the age of one or two, followed by severe constipation, doesn't scream Hirschprung's to me. But I'm a parent, not a gastroenterologist, so of course further investigation is required.

I can't help wondering whether it's related to the meningitis. If i understand your time-line correctly, your dd had meningitis 2y ago, and the constipation started shortly after. Could meningitis have caused neurological or physical damage to her bowel?

Fennel tea is good for reducing production of gas. You need a good-quality brand, like Pukka or Dr Stuart Botanicals. Charcoal tablets are good for absorbing gas as it is being produced. You can get them from any health food shop. She might like crunching them up (they're sweet and gritty, and turn your teeth and tongue black for a minute or so - my kids love them!) or you could get capsules and sprinkle the contents on food.

With the Movicol, she doesn't need to drink 8 glasses for 8 sachets. Each sachet only needs a bit over 4tbsp of water, so 8 need 500ml. Plus, of course, other drinks during the day.

Flippyflapper I agree with blossomweary as I'm also a parent of a late diagnosed ds with hirschsprungs disease. Ds was diagnosed aged 2 with short segment hd and he did pass some meconium at birth. Long story but didn't poo much at birth and constant problems till he had another rectal biopsy aged 2 and it came back positive whereas the first one at birth was negative due to missing the affected segment.

Big bloated tummy is typical hirschsprungs and although constipation in children is very common and hirschsprungs is rare, I would push for tests to rule it out, if nothing else. The test however is a rectal strip biopsy done under GA as a day patient.

Hi everyone, this is going to sound awful but I can't remember her first poo :( she was in icu for first week and I suppose they delt with it as I wasn't aloud to hold her.

Hi, my nearly 6 year old DS suffered with withholding and soiling for a year, we are now nearly at the end of this long tunnel. GP put him in movicol twice a day, but what really made a difference was finding the Book by Dr Anthony Cohn, "Constipation, Withholding and your Child" google it. Also found he has clinic in Herts near London and we took him there. Basically ended up combining the medication with strict reward and consequences and for us is working. My DS always went to toilet at least once a day, he is a child that needs to go twice to be clear! and has v good diet but for some reason could not be independent enough to say he needed toilet. Good luck!