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Recurring constipation/faecal loading - please help!

(120 Posts)
Tweedledumb Fri 30-Mar-12 18:57:37

I've namechanged for this as it almost certainly outs me in RL to those who know me.

Subject says it all. DD (4) has had rather atypical constipation for over 18 months now. She started going less and less regularly, but I didn't really fret over it because she was never in any pain pooing, and they didn't seem particularly hard (and there was never any withholding). She was probably going every 3 to 4 days.

She gradually seemed really unwell, with no diagnosis, and then eventually started soiling about 4 months after first seeming ill, at which point I finally twigged what the problem was - she was massively faecally loaded.

We disimpacted with movicol, got a referral from the GP to the nurse-led constipation team within the local paed gastro team, and have been under them ever since (about 9 months).

However - it's been 9 months under them, and nothing works. We've tried maintenance doses of between 1/2 and 4 movicol (obv not from day to the next - this is at separate times!), and also no stimulant laxative up to 5 mls of sodium picosulphate.

The pattern is always exactly the same - she's well and no soiling for 2 to 3 weeks after disimpaction, then starts soiling again and becomes unwell (with no hard poos/days without poo/straining at all), then we have to disimpact all over again.

We've been doing this for 9 months, and have only seen a consultant once.

So where do we go from here? She's so distressed and embarrassed by it, and we as a family can't take much more of her either being ill and loaded (and soiling) or being ill and disimpacted (and in nappies) - it's no way for her to live if we can help it.

If anyone out there has any similar experience or professional expertise on what should come next, please, please let me know - I'm so sick of pushing for further investigation or intervention and being fobbed off sad.

ellenbrody Fri 20-Apr-12 16:30:49

Ha! Yes, that was the word and I remember thinking exactly the same thing! Tee hee

NormanboysMum Mon 16-Jul-12 12:23:14

Hi glad to hear that you are at last getting are things going ?? Really feel for lad is now 10 and has faecel impaction all his life, with the soiling etc. Changed consultant at local hosital 18 months ago who refered him to the Gastro team at Great Ormond Street hospital and he is now under a consultant who specialises in motility disorders....It has been a revelation ! DS spent 3 days as inpatient last month and has every test they can possibly do on his lower intestinal tract, colonic manometry, endoscopy, colonoscopy, ano-rectal manometry, full thickness biopsy from his rectum. We go back to London next week to get all the results, but one they have disclosed so far is that he does not have any rectal "relaxation" reflex hence he cannot open his bowel.
I would seriously recommend any parent who is "getting nowhere" with local hospitals to ask for/get a referal to nearest childrens hospital who specialise in these problems. When DS was there they had 3 Dr's who where doing research, so he was able to provide a iopsy towards that and help other children. We have had years of the stress, the worry, the unnecessary comments, an unhappy child and unhappy parents...I really do hope you are getting on well !

Tweedledumb Fri 27-Jul-12 12:57:48

Hi NormanboysMum - thanks for your kind message.

I'm so pleased that things sound to be finally moving forward for your son - what a terrible time he and you must have had dealing with this his whole life. I can't believe he's never had any of these tests, after all this time sad.

Not sure how things are, actually. Not as straightforward as we'd hoped (though I'm not surprised, to be honest).

We've had a lot of success coming off the Movicol - no soiling in over 3 months now. But unfortunately DD has reimpacted/reloaded a couple of times already, and now seems to have reimpacted on 20mg a day of picosulfate!! It's so hard to tell with her as it's really atypical, so she'll still be going off to do poos at least once, if not several times, a day, but stuff seems to get bunged up again in her saggy old colon.

Thanks for telling me so much about Great Ormond Street. That's really interesting to know. At present we're under a specialist paediatric gastro consultant at a children's hospital, but we've only seen him twice as we've been under the care of the associated nursing team (previous posts will tell you how that went!).

We're going to have to try and see him again as quickly as possible, and I really think we need very regular consultant input from now on, as the nurses just can't deal with this. But we're not far at all from London, and I've been wondering for a while now whether to try and switch over to Great Ormond Street if we don't get more help soon.... Definitely something to bear in mind in the upcoming months.

Will you please post/personal message soon to let me know how your son has got on? I really hope you get clearer answers (and hopefully a good prognosis) as a result of all the tests. What a brave boy.

Tweedledumb Wed 01-Aug-12 12:19:40

Bumping this...

cestlavielife Wed 01-Aug-12 14:43:37

dont know if already said but my son had severe impaction and constipation/overflow issues - one gastro recomended probiotcs daily and this has really helped -we use biocare acidophilus powder half teaspoon in juice daily.

Tweedledumb Wed 01-Aug-12 19:11:31

Ah, thanks for sharing that, cestlavie, that's really interesting.

I've asked the consultant about this specifically, particularly because my DD had heavy duty reflux meds when an infant, and also had gluten for a long time when very intolerant of it. However, he was a bit dismissive, and said it would normally cause diarrhea rather than constipation. But I know that's not the case! I think I might just try it anyway without consultant input, as there's no harm in giving it to her.

I'm really pleased it helped your son - hope he's doing much better now.

Thanks again smile

fivegomadindorset Wed 01-Aug-12 19:17:28

Sounds positive, we were referref to the specialist incontinence school nurse who wants to refer us to parenting classes hmm

Interestingly I was talking to a friend who is a GP in Australia and ashe can't understand a) why DD has not had any physical examinations to make sure that everything is in working order and b) why we haven't been referred to a nutritionist to see if she has an intolerance, both of which are very common referrals out there.

Tweedledumb Wed 01-Aug-12 20:43:00

FFS, fivegomad - what on earth would parenting classes add to sorting out a serious constipation problem? Or is it supposed to be as an additional support (even so, doesn't sound like the right avenue)? What have you said?

That's really interesting re your friend in Australia. I had a strong feeling that we'd not had the best treatment we could have done, but this thread has really brought home that it's true across the board. Really depressing.

Eachpeachpearwherestheplum Tue 19-Feb-13 22:39:58

Can I bump this thread? Really hoping all you lovely mums have good news to now share, months on?
Really struggling with DS and years of issues. Daily movicol, 1 a day works for a few weeks, then back to square one sad Really had enough. Under Prof Candy and awaiting Nursing team to contact us sad

Plopsicle Thu 21-Feb-13 16:39:45

Can i ask how you would know if your child was impacted?

Ds is 9 and only poos once a week, the poos are really big though. No issues with overflow/soiling.

Marzepan76 Thu 23-Jul-15 00:10:28

Hi there.. I was just wondering how this turned out? Also did anyone try daily enemas instead of/as well as laxatives? Thanks

PippaFawcett Thu 29-Oct-15 15:59:43

Hi to all the original posters, I wondered if anyone has got any updates they can share? We are currently going through something similar with DD and it is a nightmare.

Tweedledumb Wed 18-Nov-15 14:25:52

Hi, I'm sorry I never got back to this thread - I wasn't anticipating additional responses!

I'm updating as I think it might be useful for others who are obviously coming across the thread looking for answers.

I started this in really dark times, and tbh things just got worse and worse for a while. We were doing full bowel prep clear-outs every weekend, and then phosphate enemas every weekend. I was told the next step was a stoma, and then they did a Hirshprungs biopsy (which was negative).

DD already had various gastro allergies, to gluten, oats, dairy and soya (what's incorrectly termed intolerances). It turned out, after about 3 years of her colon basically packing up, that she needed to come off egg as well. And then she was fine - was as simple as that.

We found out because a bowel biopsy showed up some cells called eosinophils, which indicate a type of inflammation that can be caused by food allergies.

Things changed massively straight after we took her off egg, but we've also used paediatric acupuncture to help, as her gut can still be set off by viruses sometimes/allergen exposures.

We did also end up seeing a consultant at Great Ormond Street privately, and then switching across to him on the NHS (not easy). We've been discharged from there, but still use an amazing dietician there - she's just wonderful :-)

I hope all this info may be of some help for those out there battling this. It's unbelievably hard, but there can be a light at the end of the tunnel. My experience is that treatment is generally dire, so fight, fight and fight some more xx

PippaFawcett Wed 18-Nov-15 14:33:59

That is good news to hear that you have had a proper diagnosis and found a reason for her bowel issues.

We are still waiting for a referral for DD and she is on Movicol which seems to keep her going but doesn't stop the soiling.

Thank you for posting the update, I have searched the site for similar stories as I get more info here than I do from the GP!

Tweedledumb0 Wed 18-Nov-15 15:09:16

I think quite a lot of people find soiling problematic on movicol. I hope you get some answers.... Do push if not!

Adarajames Wed 18-Nov-15 16:38:52

Someone back earlier in thread mentioned complementary treatments; I've found that reflexology works very very well on morphine induced chronic constipation, wondered if worth trying for chronic constipation due to other causes?

Tweedledumb0 Wed 18-Nov-15 17:08:21

We've certainly find acupuncture fab, and my understanding is that it's not totally dissimilar.

My advice from long and painful experience would be that constipation is one of the things western medicine is pretty poor on, and it's definitely worth trying other avenues at the same. I wouldn't rank all complementary stuff equal, but suspect reflexology could prob be similarly helpful to acupuncture.

One of my biggest regrets is allowing the sledgehammer approach of western medicine to go on for three years before trying a more holistic approach. And happily, at their best, I think they work in tandem smile. But not if you're just chucking elephantine levels of drugs at the problem [bitter!]

Tweedledumb0 Wed 18-Nov-15 17:09:18

At the same time, I meant!

Marzepan76 Thu 19-Nov-15 03:35:29

Thanks so much for posting the update - there are so few good news stories where things resolve after years. Hopefully it's because when things resolve people feel less like hanging out on the internet talking about it.. but I'm not so sure.
I haven't tried dietary changes and will do so. That is fantastic news for you.
Thanks again

Tweedledumb0 Thu 19-Nov-15 14:08:07

In my case it's because it descended into a total flipping nightmare for a couple of years, but yes, then once things resolved it was nice to think less about it!

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