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Recurring constipation/faecal loading - please help!(120 Posts)
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 .
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!
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.
At the same time, I meant!
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 . But not if you're just chucking elephantine levels of drugs at the problem [bitter!]
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?
I think quite a lot of people find soiling problematic on movicol. I hope you get some answers.... Do push if not!
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!
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
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.
Hi there.. I was just wondering how this turned out? Also did anyone try daily enemas instead of/as well as laxatives? Thanks
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.
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 Really had enough. Under Prof Candy and awaiting Nursing team to contact us
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.
Sounds positive, we were referref to the specialist incontinence school nurse who wants to refer us to parenting classes
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.
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.
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.
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 .
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.
Hi Tweedledumb..so glad to hear that you are at last getting somewhere...how are things going ?? Really feel for you..my 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 !
Ha! Yes, that was the word and I remember thinking exactly the same thing! Tee hee
Really glad to hear the constipation team are good, ellenbrody - that must feel very reassuring. Welcome to the gang of "one of those things" constipation! Did they say idiopathic? I always like to think of it as idiotic
Just checking in, I'm glad to hear of some successes. We have seen the 'constipation team' at the hospital who are helping to manage us now, they seem very efficient - return calls quickly and ask all the right questions! They did say that there is no way of knowing how long DD will need to stay 'medicated' and that only 3% of cases of impact ion have a clinical cause. She had a medical term for it )can't remember what it was!) which means 'one of those things'!!
Oh no - I've killed my own thread
Just to see how everyone else is doing - hope your DC are doing OK...
Ah, thanks ellenbrody - that's kind of you to remember. The consultant appointment was yesterday, actually; I haven't had a chance to post until now.
It's been a fruitful week, I think.
The first update is that we saw a new specialist constipation nurse, not part of the hospital team, on Wednesday (our health visitor has been encouraging me to go down this route for a while, as she really rates this community nursing team).
This nurse seems really clued up, incredibly friendly and efficient, and it seems very obvious from our chat with her that there are plenty of other meds we can try in different dosages/combinations before we abandon all hope. She was realistic, and wasn't promising the world, but it just looks like a service that would provide far more tailoring to DD's needs and the fluctuations in her symptoms.
She also suggested using Dulcolax pico perles (tiny little balls of stimulant laxative) to disimpact DD, instead of vast vats of Movicol. This has been such a success - DD loves them, as they're like tiny raindrops, so it's like a magic experience instead of a horrible trial .
This nurse also bothered to write up a really thorough and clear plan of action and then dropped it round to my house the next day and talked it through with me!
The consultant appointment was also good. I had to kick up a stink to see him rather than the registrar, even though they acknowledged we were supposed to be seeing him .
However, when we did finally see him, he gave us a lot of time. He basically ran through all the possible organic (so, underlying, physical causes) to reassure us that they've been right to exclude them (and that's fair enough and quite right).
We talked about our total lack of success in finding a maintenance dose, and he basically said no Movicol if we don't need it (which I've been saying to her hospital nurse for ages, with no avail), and use stimulants which we can then juggle and increase and lower doses very flexibly according to her bowel movements - not advice we've had at all so far!
Also interesting was the fact that he said palpation (feeling the tummy) wasn't going to be a reliable diagnostic tool for DD as her impaction is often soft, so we should be going on symptoms instead. Somewhat puzzling given that on more than one occasion I've said that DD's been obviously ill again, soiling, bloated etc, but been told that she's not impacted based on palpation by the nurse...ho hum.
So, the upshot is that we're going to use this new community nurse, who seems really helpful, and then liaise with the consultant if necessary (he said I could contact him if we needed further help, which is a bit of a miracle, although notably no follow-up appointment made). I guess we'll still be in touch with the hospital nurses, but I'm going to basically try to get things under control and then just inform them what we're doing.
Sorry - really lengthy, but I thought there might be a few things in here that could be of use to others on this thread, hence the level of detail!
Hope everyone else is doing OK....?
Tweedledum, how did the consultants appt go? It was this week wasn't it?
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