Chronic constipation

[Can I?]

Anyone else's child struggling with this issue? I feel alone in the world. My 6 year old son has been suffering from constipation and encopresis for the last 3 years. I would love to talk to someone about it!

[EvaandOllie]

My DD suffers badly from constipation. We don't know why, we've only recently found someone who understands and believes that its not just been for the last few days it is all the time! DD got so scared of pooing she was withholding from since before she was 2 and just got worse and worse. Countless times a day she would run off and hide, tense her bottom and if it was really bad scream until the urge passed, no poo though. She would even wake up to do this. Then there was the "overflow".
Anyway we are now working with a continence clinic, we are at the point of trying to clear her out and keep her regular I don't know when or if she will try and find an initial cause for the constipation in the first place. ATM she is on one movicol and recently added 1/2 a laxative a day (not liking that, it gives her a bit of a sore tummy at times), she tried to take her down to 1/2 movicol a day but she started getting constipated again.
I don't know if this is the same thing as your son but I'd would love to talk to anyone who has dealt with something similar! Has your son always tended to be constipated? How did you go toilet training him? My DD's fear has extended to the toilet so we have not been able to yet, we are encouraging her to sit on a potty but not telling her to do wees/poos on advice of our lady :)

[Pax]

This may interest you.

http://www.pcaa.org.au/nid_program.htm

Not saying this is your child disease but the management of chronic constipation would be similar. I know about the interferential treatment personally and have heard it has huge success

[TripleTime]

DD1 & I do.

Its not fun at all, T's booked into see the Pead in august.

[gizmoduckus]

We have sort of had to deal with the same thing except with a younger child. My DS2 has Hirschsprung's Disease which means that the nerve endings in his bowel never formed so his body didn't know how or when to poo. I have seen how uncomfortable and how much pain he has suffered with, so I can definitely sympathise with you.

He is only 16 months old now but apparently we might have to deal with issues when it comes to toilet training him but I guess we will cross that bridge when we come to it.

:hugs: I am sure that there are plenty of people around who have dealt with it. I hope you get the support that you are looking for.

[reAllytee]

My DS2 has gut issues & keeping his bowel moving is always a big effort !

We are lucky we have a fantastic Paed & GI who are always on call & helpful.

I don't even want to ponder TT & he is coming up for 3yrs because I really am not looking forward to it at all.

There is another member on here but she rarely gets on nowadays but her username is Tisme you could do a search for her & PM because most of her posts are related to this topic. She is a good friend of mine & has been a huge source of help & support, her son is now 8yrs old & it's still ongoing :(

Both Tisme & I tend to mainly deal with the overflow issues because there is no inbetween for us. Just the constant accidents of gunk seeping through nappies & pants etc. It's not fun at all :no: Movicol is our 'constant' & I always have stacks of it in the house so we never run out. My boy can be on anything from a full satchet each day to 5 depending on how bad things are. We also use suppositories as much as we hate them.

There are a few of us around but not all that many iykwim sadly for most kids it's something they grow out of within a few months etc or it's something due to the psychological nature they don't want to evacuate their bowels where as for the few of us it's a physical issue which in turn also creates a psychological problem etc.

My DS2 is so used to dirty nappies ( can poo up to 10 times a day, much better than the 30times !!! ) he doesn't even care & will not even acknowledge he has done anything. I can smell him .... Oooooh boy can you smell him :barf: but he doesn't grasp any of it.

Anyways you certainly aren't alone :hugs:

[Can I?]

Yay!! Replies!! :yelclap: :wave:

C has always had issues - he started with the projectile vomiting as a little guy, but things settled after 12 months. The constipation started when he had to wean suddenly after an accident at 3. He was only having a couple of breastfeeds a day, but it was enough to keep his BM loose and everything moving.

All of a sudden he was badly constipated, so we saw the GP and started a laxative/enema program to clear him out and get him moving. Great! But the constipation and overflow continued. We were eventually referred a paed who we saw for a year. X-rays showed a grossly enlarged bowel and rectum that was REALLY backed up. We started a new regime with the idea of keeping him clear for 6 months and then repeating the x-ray. Movicol and lactulose every day for 6 months, repeat x-ray, still constipated (right back to small intestine). Paed referred us to the local surgeon for assessment with the idea of biopsying for Hirschsprung's - but the surgeon didn't want to do it. So back to the paed. Paed didn't have anything else to offer, so we started at the continence clinic at the local hospital.

We have been there for 8 months now, and things aren't changing at all. It's disheartening. C presents a little atypically with massive bloating and resistance to the effects of laxatives. He goes along nicely for 2 weeks, and then all of a sudden he blows up like a balloon and just stops pooping. We up his dose of Dulcolax and eventually he lets fly.

At this stage he is completely incontinent with poos. He wets sometimes as well. He takes Parachoc, Dulcolax and senna daily. He is coping at school, but has come home a couple of times with poopy pants, and it terrifies me that there will be some social repercussions.

Pax - thanks for the link. I have read this before, but great to be reminded. How widespread in Australia is the interferential treatment? It is something I would be keen to give a go.

Sorry this is so long :ecomcity: I have a LOT to say about all this stuff. :banghead: :hissy:

[gizmoduckus]

:hugs::hugs::hugs:

It is tough when you don't know how to help them. DS2 started showing symptoms when he was first born but they decided not to test for Hirschsprungs because it was "highly unlikely" that he had it. It wasn't until he was 10 months old that I started to push and our paed referred us to another surgeon who agreed to the biopsy. Lo and behold, he did have it.

Not all doctors and specialists take us seriously. If you are not getting the answers that you want, then I suggest that you find someone else and keep doing it until you do.

I hope you find what works for your son soon.

[EvaandOllie]

Thanks Pax, that link was very interesting, I've never heard of any of that before. I now know why the lady looking after DD now (going to call her S as I'll probably mention her again) asked how long it took her to do meconium, she did it within 24 hours she I assume it rules out slow transit?

TT- Like you say DD seems to be built like myself (but worse), its so unfair that such a young child has to worry about and be scared of these things :(

Is Hirschsprungs similar to the diorder in the link Pax gave? It sounds very difficult :hugs:. Is there much known about? Lucky you pushed for some answers! I know what you mean about not being taken seriously in a way, when DD was younger we took her to a pead but being young and new parents he assumed we were overreacting and told us she just needed more sleep. S is the first medical person who has really understood us though I still feel we could use something more, maybe answers lol.

reAllytee- You must spend a small fortune for movicol when its 5 a day! The oveflow certainly has a smell of its own doesn't it? You can smell that its old poo, it smells like it would make the poor things feel sick :(. Wow, 8 years and still ongoing, its a long road!

Can I- what an amazing job breastmilk was doing for your son! Its incredible that you yet can't get anything to resemble the job it was doing. You've had a a lot happen in the last 3 yeas, is the biopsy still on the cards? I don't know much about all this technically, I really hope you can get some answers and resolutions soon :hugs:

As I've said we don't know what makes DD this way, I know she is now worse because of the psychological problems (withholding) but she has always tended to be constipated, I didn't realise how much until we had DS. So I would think that even something minor physically (like a food intolerance) had to set it off? When we first saw S I asked about this, she said we would get her moving before we went into that, she was going to clear her out then send her for an xray (she could tell by feeling how big her bowel was).
Out next visit DD was doing well, feeling less full apparently, continue as we were. Next visit she is feeling full again and being having moments of withholding aswell as some overflow is back, S thinks the movicol is sitting around the poo to much instead of getting absorbed as the bowel chart is all 6/7s she wants more "substance". So DD is put down to 1/2 movicol and added 1/2 laxative. After about a week she is withholding and clearly constipated so its back up to full movicol. Now we are just waiting for S to get back from leave for our next appointment but I'm thinking we might have to ask for the xray?
Sorry for the ramble, I should just be glad we have found someone to help and we are seeing poos that don't resemble footballs :yes:.
How does everyone get their children to drink the movicol? I know its not ideal but we have to make DD's up then add some solo to it otherwise she wouldn't drink it.

[Pax]

Pax - thanks for the link. I have read this before, but great to be reminded. How widespread in Australia is the interferential treatment? It is something I would be keen to give a go.



I have no idea on the study anymore. I had a company that imported and sold the interferential machine and was therefore only involved in that side of it.

But i was absolutely fascinated at the time, reading how much it was helping children. I would say you would do well to contact that group on that link and ask.

You can purchase the interferential machines from suppliers in all states of Aust still, but the knowledge on how to apply it successfully, is key to the success of treatment.

Frances O'Conner a Pedeatric Gastro Doctor at the RBH in brisbane was who had the know how here.

Basically you go to a consult with a specialist like this and they work with you.

When a child has a interferential treatment, the parents have told me 20 mins later that they moved their bowels. Magical for that family. The mother was in tears telling me about the success for her daughter.

so although I cant really help anymore as I am not in that business anymore, 2 years ago I knew it was helping very much kids that had suffered badly.

[gizmoduckus]

Is Hirschsprungs similar to the diorder in the link Pax gave? It sounds very difficult :hugs:. Is there much known about? Lucky you pushed for some answers! I know what you mean about not being taken seriously in a way, when DD was younger we took her to a pead but being young and new parents he assumed we were overreacting and told us she just needed more sleep. S is the first medical person who has really understood us though I still feel we could use something more, maybe answers lol.
It is very similar in most things. The only thing is that Hirschsprungs can not be treated with anything other than surgery. DS2 had to have 10cms of his bowel removed because it just didn't work. He also had to have a colostomy bag for 4 months because his bowels were so stretched out from keeping all his stool in there. It gave it time to heal and return to normal.

It also seems that Hirschsprungs is more common in boys and Slow Transit constipation is more common in girls.

We had plenty of people thinking that we were over-reacting, even people not in the medical profession, and he wasn't even our first child. We just knew him better than everyone else and we knew he was in pain. I am glad that you have found someone who really listens to you.

[reAllytee]

it can be sooooo stressful & so upsetting when people don't grasp what's going on ... I sometimes bite on here :o because when people hear constipation they say " offer pear juice " & I want to scream " DON'T YOU THINK I WOULD USE THAT IF IT WORKED " but I know they just can't understand. I know I couldn't before G & am lucky I have Tisme because we both call each other at 11pm after a cr@ppy heh day ranting to each other because we know we both 'get it'.

Gizmo I remember you were like me, beside yourself & begging for help with everyone looking at you like you were crazy ...

Heck I started thinking I was !!!

With G he was born all was fine until he was 3 days old & was either screaming hysterically or out comatose where he couldn't be roused. We then had dehydration issues, weight loss, excessive vomitting etc. We assumed it was only Reflux but everyone ignored anything I said & all doctors refused to believe me.

We ended up in Sydney Childrens Hospital under a wonderful GI who found he was LI & CSPI ( he now also seems to have sensitivities to wheat & fructose. ) Along with GORD & aspirating into his lungs cause he was so badly compacted it in itself was causing problems, delayed gastric emptying, very large loopy bowel which also has slow motility.

We had no dramas with passing the meconium so along with other things we knew it wasn't Hirschsprungs but they also checked for Pyloric Stenosis cause he vomitted so amazingly but that was clear too.

There are other 'issues' he has physically too which means we could be looking at something else causing his dramas but we won't know until he has gotten older to see how his gut matures etc. Our GI isn't invasive & I am fine with that because while I am often frustrated we are OK at this point iykwim & while he is growing & not losing weight anymore we are happy iykwim !!!

But OMG YES ABOUT THE POT BELLY !!!!! It's insane isn't it !!!!

[Can I?]

We are quite restricted as to what is available treatment-wise because of where we live. There isn't a paed GI in our state, and only one surgeon that does paed surgery locally. The biopsy hasn't been ruled out, but everyone at the continence clinic seems to avoid any further testing. The cause of the problem isn't known, and isn't being looked for which I am finding frustrating.

We have tried dairy elimination and had blood tests done for gluten intolerance. We have tested for thyroid issues etc. We have done juices, exercises, massage, too many laxatives and combinations to count, waited, been strict, high fibre, low fibre, different fluid levels, supplements, natural therapies, blah blah..... 3 years is a long time. It's half his life.

Our little guy is a trooper, but I've had enough. I might contact the NID group posted up there. At least I might get some different advice there.

[reAllytee]

What a bugger about the GI :(

Keep pushing, you will get heard soon enough :hugs: