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Recurring constipation/faecal loading - please help!

(110 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.

Springforward Fri 30-Mar-12 19:52:52

Nothing useful to offer but I'll watch this thread with interest - my 3yo DS has a similar issue (maintenance doses of lactulose etc.) and, unhelpfully, is currently going through a phase of rejecting fruit and veg....

I understood that the trick was to keep the laxative going for as long as it takes to establish a reasonably regular pattern again, so the bowel has a chance to shrink back to normal size and regain tone, but we're not having a huge amount of success with it either. I am going back to GP to ask to be referred on again.

Tweedledumb Fri 30-Mar-12 21:16:58

Oh, good luck with that, Springforward - I'm really sorry to hear your DS is suffering too.

Aye re maintenance dose - the problem is that we just don't seem to have found one!

For what it's worth, it might be worth pushing for Movicol rather than Lactulose (Movicol's more expensive, I've been told, so I think sometimes GPs in particular try not to prescribe in the first instance). My (non-professional) understanding is that Movicol works in a slightly different way, and can be more effective (though obviously makes bugger all difference for us grin).

DorisIsWaiting Fri 30-Mar-12 21:34:25

Really sorry to hear about your dd.

we had similar issues with soiling (wee and poo) with dd1 at about the same age as your dd. We have been through all sorrts lactuloase then movicol then school refered to continence team (GP wasn't bothered despite dd's distress).

DD is now on a dairy free / soya free diet ( she was suffereing massively with abdo pains aswell) and has 4 sachets of movicol a day. We are now being refered on to the paeds but I don't envisage much change ....

DorisIsWaiting Fri 30-Mar-12 21:35:30

Forgot to say dd's now 6 nearly 7 I am beginning to wonder if movicol will now be a permenant feature in her life sad

Springforward Fri 30-Mar-12 21:40:28

Thanks for the tip - tempted to speak to pharmacist first so i know what to say to gp!!!

Sometimes I am sure DS is trying not to poo because it's scary, then soils. We try hard to make the big poo as unscary as we can (potty in front of telly etc) but i do kind of feel that if we could crack that we might get somewhere?

WipsGlitter Fri 30-Mar-12 21:40:29

I feel your pain, DS is on Movicol. On a different track was there anything that might have triggered the withholding? Dud shecstart school or pre-school? Did she not like the toilets at school?

3littlefrogs Fri 30-Mar-12 21:51:23

You need to be consistant with the treatment dose of everything for at least as long as the problem has exisited. No stopping and starting, and no reducing the doses. Each time you change the regimen you end up going right back to the beginning again. This should have been explained to you right at the start of treatment.

When dd had this she had 3 different kinds of medication: Lactulose, senna and docusate. Large doses of everything daily. After 6 months I thought we had sorted it, but as soon as I reduced everything we were right back to square one. In the end it took about 2 years to get a normal pattern of bowel function in place.

In the beginning we had to use glycerine suppositories every 2 days because she was so frightened of "going", because of the pain.

I think that in recent years, movicol is used more frequently, but it wasn't an option back then.

HTH

sunshineandshowers13 Fri 30-Mar-12 21:51:42

ok. I'm not sure our experience will help but. . .
you're not alone. My dd2 who is now 8 has never never pooed normally. Ever. A cycle of constipation - disimpaction- soiling- over and over since she was a baby. Our disimpaction regime at one point consisted of 12 sachets of movicol daily for 3 months, you can imagine how that went! We were on 30ml of senna daily, 15ml sodium picosulphatealso used enemas and suppositories. We were dairy free for 3 years and also soya free- all to no avail - she still didnt poo. She missed nursery then school, playdates, parties, sleepovers, day trips, swimming the list is endless and i'm sure very similar to yours.

I felt we were constantly being fobbed off with "childhood constipation" and not getting anywhere. Meanwhile my beautiful daughter was getting thinner and more exhausted by the day, not to mention the embarassment and shame she felt having soiling accidents at school and in front of her friends.

She came to me one morning saying she would be better off dead as then the rest of us (me,dh,dd1,ds) would be able to do whatever we liked whenever we liked and not have to work things around her all the time. So after i managed not to break down in front of her and get her to school, i went to work (GP receptionist) and broke down in front of GP.

Fast forward 1 yr - we are now doing daily rectal washouts. I know. Colonic irrigation without the posh bathrobes grin She now admits she no longer hates them, only strongly dislikes them - this is a HUGE step forward for her. BUT no more accidents or soilings and she is *well*. I wont pretend its not horrendous for us every night but we can deal with it in the privacy of our own bathroom and its something she has control over.

wimini Fri 30-Mar-12 21:54:10

I also feel your pain. I have two children on movicol - fortunately the maintenance dose of 1 sachet a day works wonders for the eldest and the little one (18m) is making a bit of progress on it but we're having ups and downs. We have kept the eldest child's dosage steady for more than 2 years now, and when we reduce it we're going to do it very, very, very, very slowly.

sunshineandshowers13 Fri 30-Mar-12 21:55:08

like 3littlefrogs says when we talk about keep the dose going - i mean for aggeeesss! Triple how long you think you need and then leave it a few weeks longer grin We were told it would take as long again for the colon and rectum to "shrink" again as it did for it to stretch in the first place.

Movicol apparently passes through your system with the water its mixed in, lactulose absorbes water from the rest of your body to soften the poo. You need to drink lots when on movicol - not just the movicol itself.

3littlefrogs Fri 30-Mar-12 22:00:49

Oh - and don't give things like weetabix, bran, or high roughage food. It just builds up in the stretched bowel and causes an enormous hard mass that blockes everything up. This is not ordinary constipation so the usual advice doesn't apply.

Things that are good are:

Stewed apple
boiled mashed carrots and swede
apple juice
tiny amounts of bananas
small quantities of broccoli.
Vegetable soups, small amounts of lentils, all with loads of liquids
plenty of wet foods like custard, yogurt,jelly etc.

Springforward Fri 30-Mar-12 22:06:54

3littlefrogs, I didn't know that! Will put that into practice TOMORROW, thank you! DS loves weetabix....

sunshineandshowers13 Fri 30-Mar-12 22:11:37

hope i havent hijacked blush
should have also said that you need to make sure next time you see the consultant and not the registrar/nurse etc. Be polite but insistant. I think sometimes they underestimate the emotional impact of soiling etc on the child and the family. Make it clear how much this affects your entire family. Write it down and take it with you if needbe. I was unwilling to discuss everything in front of my dd2 as she was so embarrassed and felt it was her fault, so took my mum along and she waited with dd in the waiting room for some of the consultation. Felt i could then speak freely about just how bloody awful it actually was.

Do you live in England where you have the choice of hospitals and consultants? We are in rural scotland so had no choice where we went or who we saw.
Have you tried the eric website? www.eric.org.uk
We found that movicol just doesnt work for our daughter and the consultant did say he hadnt met any other child like her - i know there are others out there. Movicol is not always the answer.

Kione Fri 30-Mar-12 22:14:54

My friend has a son with this problem, he is 4, and after giving him suppositories, laxatives, and nothing working, someone told her to try fig juice. She said it worked, its very difficult to get holf of and she buys it on the internet (but we live in a very small place).

Its worth a try as it is tasty (he likes it) and it won't harm her. I know other adults that have that problem that eat figs, so it must be something on them.

Tweedledumb Sat 31-Mar-12 07:38:26

Oh my goodness - thank you all so much for posting - I didn't expect to get so many replies. It's lovely to know that we're not alone (I know that in theory, but in practice I never meet anyone else whose child has this level of constipation and soiling).

On the dose change comments, I know we've to-ed and fro-ed, but that's been under the aegis of the nurses and consultant. The upping of dose has been because she's reimpacted on a smaller dose, and the lowering of dose has then been because her soiling was attributed to being on too high a dose of movicol (but transpires that she was actually just impacted and soiling again). I quite agree that we should stick to a dose, but we haven't found one that stops her getting impacted.

I should have mentioned, but was worried because my OP was already so long blush - she's extremely gluten intolerant (though not coeliac), so was already off gluten before this started. And she was off dairy and soya when this started, but has since grown out of that intolerance and so is back on them (although we're actually stopping dairy and soya again just to rule them out definitively as the cause). I actually wonder whether the diarrhea from the gluten might have masked this issue when she was little, as it the constipation started a few months after she'd come off the gluten.

Sunshine, thank you so much for your posts - you haven't hijacked in the slightest! I'm so sorry to hear of your daughter's distress; that's exactly the direction I can see mine moving in at the moment. She told me yesterday that she wants me to work at her nursery so that she wouldn't need her accidents and nappies changing by the helpers rather than me sad. And she had her first bitchy comments from a 'friend' the other day (meaning to be bitchy, not just curious - quite sad from a 4 year old).

I need to post and run as we're off on a day trip today, with approx 1,000 nappies (!), but will post more this evening. Thanks so, so much again - perhaps we can provide a bit of mutual support through this thread....

Mummyinggnome Sat 31-Mar-12 07:46:18

Hi,
Ii know someone with this problem and found the only way that didn't mean taking high doses of laxative like substances over a sustained period was to eat no bulk forming food, ie pasta, bread, etc and a largely vegan diet. Basically no animal protein. A bit drastic, but the long term usage of laxatives can't be a good thing.
In her case, after years of trying to sort it out, she is now completely 'normal'.
Good luck.

ellenbrody Sat 31-Mar-12 09:03:47

Mummyinggnome - as I understand it, Movicol is one of the few laxatives that you can be on long term. OP - I feel your pain. The last year of my nearly 8 yr old DD's life has been pretty much spoiled by this too (not to mention missing school, work etc). A real lack of knowledge from the GP resulting in prescribing immodium ( worst thing ever!). She's on 10 sachets a day ATM & 10ml sodium Picosulphate, we were told to reduce this VERY slowly (over months, not weeks) with the help of the nurse) and it may take up to 2 years to get better. Its a real long process.
3 lttlefrogs- I didn't know that about the diet! Advice is so patchy isn't it? It seems I probably have not helped on the diet front.
Drinking lots seems key. My DD has a drink chart where she adds a star for each cup, when she gets to 8 she gets a sweet or something,

sunshineandshowers13 Sat 31-Mar-12 09:42:53

Ellenbrody - thats my understanding of movicol as well. There is just a massive lack of information for us and i think what will work for one child may not necesarily work for another child.

Tweedledumb Sat 31-Mar-12 20:04:30

Back again!

Sunshine - yes, I'm trying my hardest to emphasise every time I speak to the nurse just how extremely it's affecting DD and the rest of the family. We get the usual platitudes, but no one actually seems to do anything to move it all along. It's like Kafka with poo!

We also try to do a two adult approach to appointments, so that things can be discussed in more depth without upsetting DD (well, what appointments she has - most of this is done over the phone, including diagnosing impaction now!).

I've tried talking to the folks at ERIC, but actually they haven't been that helpful (I suspect because it's not a very standard case, as I've heard very good things about them from our health visitor etc).

I'm desperately pushing to see the consultant again, but it looks as if the nurse just didn't actually make the referral she said she would for a few weeks, which now means we can't see a consultant till May (having disimpacted in February, and now disimpacting again all this week!!). And meanwhile I'm being told to basically carry on with a dose that doesn't bloody work once I've disimpacted her, so I'll probably have to disimpact her again before we see him angry

Those of you whose children are on much, much higher maintenance doses - can I ask how you reached those? Did you start on the normal 1 to 2 movicol, get reimpactions and so get told by your healthcare professionals to up them? I pushed to try 4 movicol (which didn't sustain things, admittedly), but was told at the time that it was too high...

And also, has anyone's child actually been offered further investigations (like, I don't know - maybe manometry, gut transit studies, etc)? Sunshine, in particular - given that your DD's had this from birth, have they not biopsied for Hirshprungs?

So sick of this. The sense of loss of the happy, confident, well child you once had is just awful sad. I know it could be SO much worse, but I feel I can air that emotion on this thread. Thanks for at least reminding me that we're not alone....

Tweedledumb Sat 31-Mar-12 20:06:15

PS - Ellenbrody, so sorry for your DD and you. I'm so shocked by the immodium prescription - i assume that's labelling soiling as diarrhea?! The mind boggles....

Tweedledumb Sat 31-Mar-12 20:07:59

Sorry, PPS (a glass of wine down!) - I think the lack of information, and the fact that different things work for different children, are both key.

I keep having the same stuff trotted out to me by the nurses when it's obviously not making a blind bit of difference to DD - it's as if they don't care that she doesn't fit within that framework, they just follow the same route with everyone.

sunshineandshowers13 Sat 31-Mar-12 22:54:04

tweedledum - i'll pm you.smile

ToadsPorn Sat 31-Mar-12 23:12:05

Please please keep going with movicol, insist on seeing consultant etc. my daughter has had this problem since she was 2. We have thought that we'd cracked it so many times, and stopped medication. She's had senna, lactulose, picosulphate, movicol, everything. She's hated all of them, and its been such a battle. She's now 17, and still has a problem. She's been hospitalised 3 times, had nasal drips and digital removal of impaction under general anaesthetic. She missed gcse exams, and has now dropped out of college because she's missed so much school.
I feel so guilty for failing her and not forcing her to continue with movicol, but 8 to 12 sachets a day requires real commitment.
Next stage is removal of part of her bowel. She 's had a gut transit study, and her system is just incredibly slow at processing waste, so build ups are inevitable

sunshineandshowers13 Sat 31-Mar-12 23:14:39

Ooh should have said that it was consultant who sent the movicol dosage. Start at 2 sachets twice a day i think then work up to 4 sachets 3 times a day.

But then movicol doesnt seem to work for us confused

sunshineandshowers13 Sat 31-Mar-12 23:20:27

Oh toadsporn you havent failed your dd sad. Those of us on this thread know just how bloody difficult this sodding regime is. My dd would drink it til she was actually throwing it up sad and then i would have to steel myself to coax her into just a little bit more honeypie, take your medicine like a good girl.
For fuck sake my poor baby girl what am i doing to you.

We are consistantly told that our children will grow out of it and i have to hope that in most cases this is what will happen.

I have to believe that.

Or i just dont know what i would do.

ToadsPorn Sat 31-Mar-12 23:41:15

My daughter didn't do a poo at all for a whole year aged 16. She just had overflow every 10-14 days, for 4-5 days at a time. She spent a week having some vile substance called kleenprep via a nasal tube aged 15, which was supposed to clear the blockage. It didn't. She then had her birthday, and so the paediatric consultant was no longer interested, we had to wait for referral to the adult consultant. In the meantime, she just became more and more impacted. No one seemed to understand what she was suffering sad

ellenbrody Sun 01-Apr-12 10:31:40

ToadsPorn - Your poor poor DD (and you). I'm so sorry for everything she is going through and my heart really feels for you <<hug>>.

Tweedledumb Sun 01-Apr-12 14:29:29

Me too, ToadsPorn - I'm so sorry she's suffered so much, and that you've had to watch and support while all that goes on. Your post, and Sunshine's, made me cry for you both, and all that your daughters and you have had to put up with. A big unMN hug from me too smile

used2bthin Mon 02-Apr-12 08:37:27

Just been reading this thread for some tips-DD, 5 and a half has had bad constipation since being put on reflux meds age 1 (she was put on them because the steroids she takes for a genetic problem caused stomach erosion, bit of a cycle).

Anyway we saw the constipation nurses for a couple of years but then got discharged after accidentally missing an appointment (we have a lot of appointments) and I haven't asked to be re referred as felt they were repeating the same advice each time. We are also lucky that movicol works for dd and mostly if she has it every other day it keeps her well but it is interesting to hear of children seeming unwell due to this-dd sometimes mysteriously seems very ill, she recently had a funny turn at school (possibke epilepsy related) and has been on and off unwell this year but it works both ways for her-the minute she is unwell she dehydrates and gets constipated and the normal dose is no longer enough, we'll get a week or so of dreadful behaviour, wetting herself etc then huge poos and bleeding, it is awful.

I give her weetabix every day! I tried the oat ones when trying to sort out her psoriasis and she hated them, I thought weetabix was good, oh dear will have to find a different cereal.She also eats tons of pasta-wonder if gluten/wheat free would be better or is it best avoided anyway?

OP lots of sympathy it is really awful when it is bad and it sounds like you have had a hard time of it.

3littlefrogs Mon 02-Apr-12 11:30:37

Just to clarify:

High roughage is bad for children who have an overstretched colon due to impaction and overflow over a long period.

If constipation is not due to chronic witholding, impaction and overflow, a small amount of roughage should be fine, as long as it is given with plenty of fluids and cooked fruit and vegetables.

If a child who suffers from chronic constipation (or any sick person really)becomes ill/feverish/not eating/drinking, giving a high roughage diet is counterproductive because they end up with a hard blockage. So if the child is ill, you need to adapt the diet to include the soft cooked fruit and veg plus lots of wet foods.

This is why we used to give sick people an "invalid diet" - small portions of easily digested food - typically "soup and sweet", or poached fish, stewed fruit etc. All this seems to have been forgotton now. Nobody knows how to nurse poorly people at home any more.

miarosemum Mon 02-Apr-12 19:27:17

i have had same problem with 5 year old dd. worst cycle of impaction was last summer, was referred to hospital and was admitted as inpatient for deimpaction with massive doses of movicol and an enema. x-ray showed complete blockage all the way from her rectum to large intestine. only after complete disimpaction and weaning her graudally off the movicol did she start reception in september just in time with everything back to normal (normal for us being opening bowels with no pain every other day). I suggest tweedledum that she maybe was never completely cleared out, and that the bowel movements need to be coming out like yellow water (sorry if tmi) to be completely cleared out before you start weaning her off the movicol gradually.

used2bthin Tue 03-Apr-12 07:19:22

3littlefrogs, thanks am not sure if the constipation is due to impaction etc, I think the chronic problem probably is, she certainly tends to have a cycle now of hard lumpy huge poos that would be painful to pass for even an adult and then a few days after that of normal ones.

Because of her consdition I have never felt able to give her a proper clear out with movicol in case it dehydrated her so maybe this didn't help. I think I will try cutting down the weetabix and pasta, she eats such a lot of it,its not that unusual for her to have 3 weetabixs. The sick diet makes sense, I very rarely have her home when she has been properly ill but will bear it in mind for the next milder illness or when we get home and she is recovering.

Reading this thread though I am grateful that DD has responded to movicol enough to help as much as it has.

Tweedledumb Tue 03-Apr-12 08:32:35

Miarosemum, I know, it does sound as if she's never disimpacted properly, but sadly she really has.

We've had xrays post disimpaction to confirm, and are achieving those delightful clear water poos for three days each disimpaction before dropping dose gradually. Never tmi for me where poos are concerned, sadly.

Can't believe my most responded to thread ever is all about poo; sob! Thanks so much for all your responses, though. It's really interesting to hear the approaches taken with other kids....

miarosemum Tue 03-Apr-12 08:48:57

because it is such a common problem sadly and you feel so alone in treating it, untill you realise exactly how many children do suffer from it. I have also tried (dare i say it!) homeopathy but as an additional therapy not to replace conventional therapy. this greatly helped dd in her first bout of constipation and she had a massive clearout and helped with her tummy ache. I have also concluded that I have to steer clear as much as possible from antibiotics as she always reacts when she has had them.

Tweedledumb Tue 03-Apr-12 09:49:00

Miarosemum, I know, it does sound as if she's never disimpacted properly, but sadly she really has.

We've had xrays post disimpaction to confirm, and are achieving those delightful clear water poos for three days each disimpaction before dropping dose gradually. Never tmi for me where poos are concerned, sadly.

Can't believe my most responded to thread ever is all about poo; sob! Thanks so much for all your responses, though. It's really interesting to hear the approaches taken with other kids....

Tweedledumb Tue 03-Apr-12 10:30:56

Bah, silly phone! That's interesting about homeopathy: I've been wondering about some form of complimentary therapy. Admittedly, it would take a lot to get me to try homeopathy, but it's not like conventional medicine is wowing me with its efficacy right now!

sunshineandshowers13 Tue 03-Apr-12 13:02:14

i'm sittin here laughing at us all talking about poo so easily!! I sometimes forget when i'm with my rl friends and they do kinda go uurrgh tmi blush

Have to admit we have a poo dance and one of the happiest days of my life was when dd2 did a poo without any laxatives only once, only one day and never happened since but focus on the positives grin
I also think that its important for the kids to talk about it too even if its only to us parents, its still seen as a bit of a yucky taboo subjects but its one of the few things that everyone does.

sunshineandshowers13 Tue 03-Apr-12 13:07:14

ooh tweedeldumb, meant to mention about nappies. I think i read further up thread (sorry if i'm wrong) that your dd wears nappies? When my dd went into nursery we found that she was really embarssed about the nappy thing and even pullups had the wrong connotations for her IYKWIM. In the end i bought dozens of pairs of cheap pants and she wore them. Obviously when we were disimpacting it was a nightmare and tbh honest threw out most of them immediately. But on a day to basis i was able to rinse, soak and wash them to a certain extent (napisan is ace as it kills the bacteria too) It did mean that we had lots of changes of leggings/tights/jeans etc but it also meant that dd was able to feel a bit more grownup and the same as her friends.
Sorry if got this wrong - dont have to time tor ead through the posts as at work blush.

ellenbrody Tue 03-Apr-12 13:31:23

Sunshine, you are right about it being taboo. We are really working on being more open about it in our family. I really did not know my daughter was constipated until it had gone too far. Luckily she has a wicked sense of humour and we try and see the funny ( hard!) rather than the gross. I keep thinking if I'd known a year ago, we could have avoided all this carp ( literally!!).

I think being open and honest even if it feels a bit odd at first us the way to go.

I also second the 'lots and lots of cheap pants' route, Napisan bucket in the bath, chuck clothes in and wash all at end of the day. My DD did wear a pull up at night when it was really bad though.

Tweedledumb Tue 03-Apr-12 14:03:35

She's only in nappies when we're disimpacting, as it's just too difficult for her then. Otherwise, she's in knickers. She potty trained no problem at all, so was used to wearing knickers for quite a long time until this started.

Interestingly, I think it's a relief for her to wear nappies (though increasingly she's conscious that it's a more babyish thing to be doing). I think nappies take away the shame of "accidents" for her - that's sort of what she's said.

Unfortunately, DD doesn't want to be open about the soiling - she hates talking about it now sad. We do however do a good dance and high five if she has a successful poo, and she will tout it round the house to show us (all time classic: "Look, mummy, it's like a number 6...[swivels potty round]...oh, or a number 9"!).

Well, ladies - you can hang out the bloody flags on my behalf. I have acquired a consultant appointment next week, rather than in over a month's time. Managed to speak to the 'right' person (in fact, a secretary in a different department hmm), who sorted it out in two minutes, literally. It's just always such a battle....

Tweedledumb Tue 03-Apr-12 14:05:10

Oh, PS - my top tip for those less advanced down this route than I am, esp for little girls really, is always to layer clothes, so that their trousers/leggings/tights are under a dress or tunic, so that any soiling isn't obvious immediately. I dunno - DD wouldn't realise, but I feel it's a little something I can do for her.

pooandmorepoo Tue 03-Apr-12 15:07:10

OP - My DS has had similar situation and was on 4 sachets of movicol a day for a year but bowel has not recovered its size at all but impaction was misdiagnosed for a long time. He has had colonic transfer marker xray and now general anasthetic to put camera in both ends and do biopsies.

In our case they took it seriously when he stopped growing, before that he was just very slow growing, now he is 7 and measures just 1.02m tall and is skinny too. Also low iron levels have not improved after a year of supplements which suggests he is not absorbing properly as apparently stocks should rebuild within 6 months. Doubt there would have been these investigations if we were just reporting the soiling and stomach pains.

sunshineandshowers13 Tue 03-Apr-12 17:13:57

Yesyes to layering! Tights under jeans with long top/cardy = camoflage (sp) grin and i used to have a "nice" bag for spare clothes etc with pink nappy bags for the dirty stuff when out and about. Anything to make it a little less traumatic for her.
i heartily recommend the poo dance Ellenbrody - its liberating and silly! How old is your dd? has she tried the Eric website? We did and she has benefited slightly from the responses on the forum bit for kids, its helped a little to see shes not the only one. However i'm not sure it would have helped her when she was younger. Not convinced about the rest of the website tbh - not overly impressed and didnt feel it was relevant to our situation.
And tweedledumb good for you getting appt!!

sunshineandshowers13 Tue 03-Apr-12 17:15:30

dont mean to be demoralising but we were "clear" for about 3 years and still her bowel did not return to size sad. its a very very long process - but each child is different

ellenbrody Tue 03-Apr-12 18:07:18

3 years!! Oh dear. My dd is nearly 8 and has only just been diagnosed after a year of stomach pains and soiling since Christmas. She is old enough to be mortified by it all and has missed a lot of school.
We are doing our first disimpaction but it's taking a lot longer than expected. 2 gps and a consultant paediatric gastroenterologist diagnosed ibs and gave her immodium!

ellenbrody Tue 03-Apr-12 18:22:50

Oh forgot to say, great news on the appt Tweedledumb, keep us posted!

fivegomadindorset Tue 03-Apr-12 18:25:35

DD has been on Senakot for over 2 years now, she is six, still don't feel we are getting anywhere, refuses to poo on the loo, and still in nappies at night.

3littlefrogs Tue 03-Apr-12 18:45:34

Gosh fivegomadindorset - I am really surprised that your dd is on senokot and nothing else. It really isn't the best thing because it works by really irritating the lining of the gut. It is usually only used short term, in conjunction with lactulose and docusate. Then the amount of docusate and senna is reduced while the right dose of lactulose plus diet is found.

Senna can cause horrible colic and pain too.

fivegomadindorset Tue 03-Apr-12 18:48:28

Shw was on LActulose but came off it about 6 months ago, the dosage has been upped from 5ml to 10 ml recently, she never clears hersefl out and she is in pain on some days. Bugger.

3littlefrogs Tue 03-Apr-12 19:00:26

used2bthin - the huge hard poos are probably due to the weetabix. Stewed apple and stewed dried fruit like figs plus lactulose would result in softer poos that would still be bulky enough to encourage a regular habit. Oranges are great for constipation too. 3 weetabix in one go would be too much for me and I would end up very bunged up!! I suffered from this very problem all through my childhood and only really got it sorted in my twenties. I never eat high fibre cereals, and restrict my wholemeal bread to a couple of slices a day.

I don't need any medication, but I watch my diet very carefully and drink loads of fluids.

sunshineandshowers13 Tue 03-Apr-12 19:10:28

My understanding was that senna caused your bowel to contract thereby propelling the poo through. And unfortunately senna was the only - and i mean the only thing that worked for my dd. She was on 30ml of senna daily for around 3 years and this usually kept her clear. There were still some days where she didnt go but on the whole it was senna that kept her going. We tried everything including lactulose, movicol, docusol (docusate), sodium picosulphate, picolax, enemas, suppositories and more and combinations of them!
Also in my dd's case it was (and still is) completely irrelevant what she ate. In "normal" (for want of a better word!) people the foods 3littlefrogs mentions will of course be beneficial but i think in children like mine/ours its irrelevant (certainly in our case).
I'll also mention that when she had her colonoscopy in october there was mention of some inflammation that is being attributed to her senna usage - but it was mentioned as being of little significance and improving all the time now she is off it. I wasnt happy giving her enough senna to make a horse poo - but we had no alternative.

sunshineandshowers13 Tue 03-Apr-12 19:17:32

And tweedledumb i was thinking about your consultant appt. I think i spent a long time pretending we were coping and that we could manage. It was an act although i can only see it now looking back. I honestly dont know how we managed for so long and i also dont bloody know how the consultant didnt realise there may have more going on.
I think everything changed when i held my hands up and said - do you know what this is bloody awful and we cant carry on. My dd of *7 yrs old* wants to kill herself to escape this horrible horrrible thing and you have to do something to help us now. Its in a mums nature to pretend that we can cope and manage and soldier on looking after our darling children and sometimes the best thing we can do is admit actually we cant.
I know i asked for help many times from the hosp (saw the same consultant every 3 months for 5 years) but can only think i didnt make it urgent or clear enough how bad things were, and of course i trusted their diagnosis of basic childhood constipation. I hope you can make your situation clear to your consultant and that he listens and acts to help your family. Fingers crossed for you smile

sunshineandshowers13 Tue 03-Apr-12 19:18:32

ooh goodness they were a bit wordy - sorry blush dont really like to talk too much in rl about this as dd now very embarassed!

sunshineandshowers13 Tue 03-Apr-12 19:23:00

ooh and used2bethin - movicol shouldnt dehydrate if you mix it with the right amount of liquid - thats meant to be the beauty of it. It works by travelling through your system as a whole liquid to the bowel instead of something like lactulose which will absorb fluid from the rest of the body. hth

ellenbrody Tue 03-Apr-12 19:28:39

Well said Sunshine, that came from the heart. (my dd has also said how she hates her life sad )

sunshineandshowers13 Tue 03-Apr-12 19:32:45

thank you ellenbrody - i felt like i had failed her and it just broke my heart sad

Tweedledumb Tue 03-Apr-12 20:01:35

Yes, it's the feeling of having failed them that's so, so terrible - and particularly when you've managed to miss the fact that they're impacted (DD had all kinds of investigations, including heart scans for the heart murmur she'd developed, prob because her poor little body couldn't cope sad). I'm interested to hear that other people's DCs have had this missed, too.

Sunshine, you're right. I've been trying and trying to convey to her nurse that we can't go on like this. (I know the total time is a tiny fraction of what many of you have experienced, but actually all the more reason to fight now, it's becoming clear from this thread). I just keep getting the brush-off, and have to wait and wait for an appointment with a doctor, while fannying about with different doses that never work, and getting the usual stuff about toileting and diet (both of which I strongly suspect make bugger all difference in DD's case, but that's just a hunch).

I even said that it was making DD really distressed, and asked about psych support. But got told that she was too young (I know this is not the case, as a child psych friend of mine suggested it!), and that I should just downplay it all. Already a bit late for that.

Meanwhile, because I want to be reasonable and keep everyone onside, I keep being polite and reasonable myself. I thought that would get results, but obviously not....

Tweedledumb Tue 03-Apr-12 20:07:19

Ellenbrody - have you actually complained formally about these misdiagnoses? What on earth did these doctors say by way of explanation? I think the problem for those of us who had to fight and fight to even find out what was wrong is that we're exhausted by the time we get to the starting line on actually battling over the constipation!

I'm so sorry your DD feels so sad about it, though not surprised. Good luck with your first disimpaction.

We're currently trying to disimpact DD while she has a temperature of between 39 and 40 for the last 3 days, with raging nausea to boot. Suffice to say that, having just reached clearout, I've had to bring the movicol dose down as she just can't take it. So will probably have to re-start next week. Poor old poppet sad.

Tweedledumb Tue 03-Apr-12 20:11:29

Pooandmorepoo (feeling I should have claimed that name for my OP!) - I'm so sorry that your son's had to go through so much before any investigations were done. That must have been so worrying and distressing for you.

The thought of basically just leaving a child ill, until they're so ill it's affecting the very way their body develops - it makes me so angry.

Interesting what you say about iron levels. When DD had full bloods done prior to anyone realising that she was impacted, the iron was quite low (though not anaemic). I'd assumed with hindsight this was probably an absorption issue, but noone ever specified....

pooandmorepoo Tue 03-Apr-12 21:18:51

I doubt anyone has ever had any success complaining about misdiagnosis because it is impossible to prove child was impacted at that time even if later found to be so. I would be very interested to hear from anyone who has tried complaining. I think it is one of the most commonly misdiagnosed illnesses.

I would be very wary of pushing for psychiatric help as it can easily be twisted round to the constipation being the result of stress or even abuse rather than the stress being as a result of the chronic constipation especially with extreme pain and soiling but no diagnosis. To the extent of children actually being registered as a child protection concern with no evidence other than these symptoms.

Only those whose childern have had their whole lives affected by this condition such as sunshine described can know the stress it causes the whole family, it is unimaginable to most people which makes it very hard to discuss in RL. No friends, no social contact for the rest of the family, being called stinky at school, loss of self esteem, anger at being in pain and being bullied or just at the unfairness of life, no appetite, low iron levels, often also causing day and night wetting, poor growth and depression to list a few.

ellenbrody Tue 03-Apr-12 21:39:56

No, we havn't complained, but my DH got VERY angry at their apathy toward us which resulted in an apology and swiftly changing us consultants to a specialist who (touch wood) has been good, she said how surprisingly common it is and she sees a lot of it - poor kids sad

sunshineandshowers13 Tue 03-Apr-12 22:10:11

we actually did get some pyschological support - but onnly after my dd expressing her wish to no longer be on this earth angry thats what it took!

Pyschologist was lovely but dd was embarrassed talking about her acciddents and poo and was really not going to talk to this new lady that she has only just met no matter how nice she is. I also think that she just didnt understand how bloody awful it all was for her and us as a family. There was never any suggestion of the constipation being the result of anything "done" to her.
Talking about iron levels - when dd was in hosp in oct for scopes they of course took gallons of blood. Got the results in MARCH saying that she was very anaemic and to start iron. So; you are really telling me MR DR CONSULTANT who is meant to know what they are doing to give my extremely constipated and impacted daughter IRON. seriously. give me strength.

fivegomadindorset Tue 03-Apr-12 22:11:45

It just goes on and on and on, fed up of all my clothes smelling like shit. The paediatrician has made us chnage the time we give DD her medication which measn that she is now back to soiling at school.

sunshineandshowers13 Tue 03-Apr-12 22:16:00

should have clarified actually - of course if she needed iron then she needed it and i would have given it to her albeit reluctantly. But by the time we got this result she was the healthiest she has ever been.

This thread has progressed a bit so i feel a bit more comfortable saying more about our situation. We started peristeen back in Septmeber and it has been immensly successful. My girl is now healthy, not constipated, hasnt had a soiling accident since we started, has a varied diet, has gained weight and height not to mention confidance and freedom and independance which she didnt ever have before.
I suppose i didnt want to mention it in case i made you all worry about the outcome of your own child and situation blush hope i havent upset anyone by not giving all the info from the start.

sunshineandshowers13 Tue 03-Apr-12 22:17:00

five - has your dd any help to get cleaned up at school? Must be very hard for her to manage on her own sad

fivegomadindorset Tue 03-Apr-12 22:19:07

They are very good with her. She had just got it sorted that she could get through the day without wetting herself and soiling herself and now feel we are slightly back at square on, we will see how we get on this holiday.

sunshineandshowers13 Tue 03-Apr-12 22:22:17

how old is she five? Its hard isnt it when there doesnt feel like there is any progress? And holidays should be fun whereas i felt we always used to have to change dosages and be near a toilet!! some fun eh?!

fivegomadindorset Tue 03-Apr-12 22:27:02

She is 6. I do find it sad as I still have to take spare clothes for her and not for her brother who is 3. We tend to do things in the morning if we go out and she is good, but when she is at home she relaxes and it is all day. Mum has given us some money to buy her some summer clothes next week as I just can't afford the amount of trousers/shorts when she can get through 6 in a day.

sunshineandshowers13 Tue 03-Apr-12 22:33:49

i know that feeling well five. i hope this change in meds works for your dd.

HansieMom Wed 04-Apr-12 03:33:17

Toadsporn, you said your daughter may have to have part of colon removed? I read about a child aged around nine who had a tunnel made at the bottom of her ascending colon. Her mom would give her an enema each day thro the opening, which would move the bowel contents along for normal evacuation. They might have used her appendix for the tunnel. While not sunshine and roses, this would be preferable to removal of part of her colon.

Tweedledumb Wed 04-Apr-12 06:31:51

You're quite right on the misdiagnosis point, pooandmorepoo - it's just too difficult to prove. However, it still seems mighty unfair that these kids get left for so long.

Your wording on psychiatric help (it's actually play therapist/psychologist I'd be after, but suspect we're along the same lines) is very strong. I see where you're coming from, but is this really the case? Have you actually experienced this, or do you know other cases where this has happened?

ellenbrody - good on your DH! Maybe you need to hire him out to people like me who are being too nice about it all wink. Actually, if my DH started, I think he'd never stop!

pooandmorepoo Wed 04-Apr-12 10:17:43

Yes i do know personally of a case where a family was referred to a mental health team team when the paed was unable to diagnose their childs condition.

Child protection concerns were then raised for emotional abuse as they had not found a medical cause for the soiling.

Luckily another paed diagnosed the medical condition at the parents request for another opinion just days before the professionals meeting to decide on outcome of the abuse!! Concerns were then dropped but no apology! It was very serious and has destroyed the family of course.

HansieMom Wed 04-Apr-12 18:33:46

Five, you should check out used clothing stores. The clothes are soft from washing. I like buying there. You can sure tell quality brands from cheaply made ones there, and she can have some quality cute clothes for not much money.

I'm in the states. I have not seen encopresis mentioned once. We are talking about the same condition (mostly)--fecal impaction, diarrhea slips past, cleanout needed, then regular sits after meals and maybe bedtime to use gastrocolic reflex to produce bm. Also medication regularly, it all takes years.

One mother in a forum talked about The Smell. The family would get ready for an outing, pile into the car, get going, then be faced with The Smell.

So, in England, do you not use the term encopresis?

sunshineandshowers13 Wed 04-Apr-12 20:31:53

Hansie - think we are talking about the same thing smile
Here it seems to be labeled simply as chronic constipation or idiopathic constipation.
Is it something that is readily diagnosed in the states and do you know of any support on offer?
I'm afraid it seems that there are too many children and families for whom this is a way of life sad

ohnoherewego Wed 04-Apr-12 21:30:20

I just wanted to say that I've been where you guys are and got through it so there is hope. DD suffered terribly from aged 2 with many hospital admissions to clear her out. I remember all to well how the effforts of the entire family were focussed on getting her to poo. I remember once looking at some 2year old having their ears pierced and was just about to be Mrs judgey pants but then thought " but I bet they've taught their child to poo."

We did go to an encropesis clinic bit they were useless and decided DD was too bad to help. Their advice was limited to try to do a poo at the same time every day after breakfast. Not a quiet time or very long time when you've got kids to get off to school.

We did find homeopathy extremely useful but I think that was because it made me feel like I was doing something to help and took the pressure off a bit so we all relaxed a bit more.

The turning point for us was when DD had her tonsils out. She then started eating a lot more which seemed to get her digestive system moving. It took another 3 years of poo dances and an hour in the loo before bed but by 8 or 9 she was fairly reliable. We have had a couple of relapses when she's gone away but on the whole (fingers crossed) she's sorted.

Not sure if that helps but just wanted to say that I know what it's like when the only conversations you have with your DH are about poo. I know other kids who have also grown out of it. I wish yopu all the best.

Thanks for posting, ohnoherewego. It's reassuring to hear of kids who do grow out of it (and particularly before their teens, when I imagine this is even more difficult for everyone to handle). I'm really glad for your DD and your family that things resolved - it must be such a relief.

If I'm honest, the thought of it potentially going on for another four years is almost unbearable. I already feel like I'm losing DD's childhood to this sad. Sorry if that sounds like a total drama queen thing to say. I'm in tears typing...

DD's now refusing to take her movicol at all, so we haven't managed to effect a thorough disimpaction. We've tried all the encouragement and tasty concoctions we can muster, but no go. I've had to say no telly if she doesn't drink it, which just makes me feel like a witch. It's affecting her so much already, and our relationship. I don't want to have to focus on this the whole fucking time, whether with her or in my own head - I just want to be able to be a normal mum....

sunshineandshowers13 Fri 06-Apr-12 08:04:10

Oh keep mum I'm so sorry sad how old is ur dd? And how long have u been dissimpacting for? Does she understand why she has to take it? How about rewards if she does drink even some of it? Rubbish suggestions i know blush
A few times we did weigh up whether the movicol disimpaction was worth it as it just takes so damn long and is very very difficult to sustain for such a period of time. It does sound as if u and your dd have almost reached the end of your tethers- I'm really not surprisedsad
Could u give your consultant a call and say this is a no go u need an alternative? Movicol is the drug of the moment I feel, so be prepared to fight your corner! I'm really sorry your family is going through this (((hugs))) (which I'm not sure are allowed on mumsnet!)grin

She does understand, I think she's just absolutely sick of doing it. I think we may end up needing an alternative at this rate - she's had to weather so much of this so stalwartly, and I'm beginning to realise how much we're all expecting of her.

Will ask the consultant - I think you're right re Movicol, the great miracle cure hmm

3littlefrogs Fri 06-Apr-12 10:14:15

Years ago I had a very painful and embarrassing post operative impaction situation. Dulcolax worked like a charm overnight. 2 tiny, easy to swallow capsules. You can buy it over the counter.

I won't describe the size of the result, but I have NEVER seen anything like it, before or since.blush

sunshineandshowers13 Fri 06-Apr-12 10:50:28

If only 3littlefrogs sad - dulcolax is senna. 2tabs is equivalent of 14mg- my dd had to have 32mg on a daily basis and even then this didn't guarantee a "result" if u willblush and this is the poo thread so describe away!

3littlefrogs Fri 06-Apr-12 11:04:54

Oh - I didn't read the ingredients sad. I never found sennakot to be much use, but this other stuff was industrial strength!!

I really don't think that this problem is taken seriously by HCP. It really does ruin lives.

fivegomadindorset Fri 06-Apr-12 11:08:37

We had a minor result yesterday, DD has been on her higher dose of senna for a week now. We were out all day yesterday until 4, she asked to go to the loo, no accidents, no wetting herslf, no change of clothes.

Highlander Fri 06-Apr-12 11:47:42

I used to make Movicol up in 10 mls of water (whisk it with a fork) then top it up to 30 mls with smoothie. Smoothie disguises the taste better than juice I found.

I then used a Nurofen syringe to get it down DS2. He wouldn't drink it, but would take it like medicine.

Movicol is much better than a laxative because it softens the stools, allowing the rectum to slowly tighten up again (takes 9 months) Laxatives don't do this, so the rectum stays floppy and allows poo to accumulate.

sunshineandshowers13 Fri 06-Apr-12 14:09:24

As I understand it Movicol is a type of laxative and they all work in slightly different ways. I'm glad it took about 9 months in your casesmile unfortunately in our case 3yrs didn't achieve any improvement at all. We didn't ever try it in a smoothie but flavoured water was good as was ribena! Have seen Movicol chocolate flavour recently which tbh makes me gag just thinking about itgrin

pooandmorepoo Fri 06-Apr-12 15:53:44

we were advised that the time it takes for bowel to recover depends on the time child was impacted - they may have said 18 months for every year?

In our case we were advised it would take several years to recover as DS had been impacted for so long but no recovery after a year on movicol so as sunshine says it doesnt work for everyone but is great for the majority.

Tweedledumb Fri 06-Apr-12 18:02:38

Fivegomad, I'm really pleased to hear that your DD had some success yesterday - she must have felt really pleased with that (as must you!). Sounds as if it may be keeping her more cleared out on the higher dose. I've had my fingers crossed for you today - has it also been a bit better?

Re clearing impaction with stimulant laxatives, like senna, as opposed to softening laxatives, like movicol - my understanding is that clearing an impaction with stimulant laxatives alone, without softening the stool first, is not usually advisable (for obvious reasons, like it'd be worse than labour!). I thought I'd flag that up in case anyone wanted to try it home on DCs.

3littlefrogs, I'm glad you came out in one piece! (The memory of post-operative impaction is still all too vivid for me - I was in this position a few months ago, and ended up needing 2 enemas to clear it. It was far more painful than either of my labours, and another reason why I feel so very sorry for all the kids on this thread...)

I agree on the time of bowel recovery probably depending on the individual, and the length of impaction. I'm really glad it cleared up quickly for you, Highlander smile

Tweedledumb Fri 06-Apr-12 18:03:50

Chocolate movicol - is that by any chance from the studio that brought us chocolate philadelphia? grin

ellenbrody Fri 06-Apr-12 18:26:37

Chocolate??? Urghh. It's not the TASTE, it's the slimy texture! DD says its ok in apple juice but dosnt like it in squash. We've gone down to 5 sachets a day (from 10) so I hope we don't suffer a setback, fingers crossed!

Our consultant said it takes the bowel as long as it was impacted to be able to work properly again, but it's difficult to know exactly when the problem started, as it was probably quite a while before symptoms started.

sunshineandshowers13 Fri 06-Apr-12 19:14:01

There's almost a saltiness to it as well isn't there [shiver] bleurgh. Fingers crossed for you ellenbrody smile

Tweedledumb Fri 06-Apr-12 19:53:26

Ugh - the saltiness....yeuch. I've been testing DD's out a bit today, so hoping I haven't drunk too much myself grin

Yes, fingers crossed for you here too, ellenbrody. And that's really interesting what your consultant said about when the problem might have started - you see, DD became symptomatic a few months after cutting out gluten. So I'm starting to wonder whether the gluten really was masking this underlying problem all along...

I note that other people's consultants have at least told them practical, helpful information about what to expect. Pah! The all-time classic line from our previous consultant, when we saw him for the first time and I told him I thought DD was impacted again (DD had already been disimpacted under GP supervision) was that in a few months I'd view all this as just a developmental blip. Hahahaha!

He also didn't examine DD, as apparently she couldn't possibly be impacted if she was on 2 movicol a day. 2 months later, when we finally attended the nurse clinic - guess what? Yup - impacted.

Can you tell I'm feeling a bit ragey today?! I've just pruned a tree very hard, though: that told it grin

ellenbrody Fri 06-Apr-12 20:26:03

Tweedle - it took a change of consultant to get any joy, first one was pants!!

Tweedledumb Sat 07-Apr-12 18:35:27

We've already changed consultant, though mainly by chance. I think the new one's better, if we can just see him more often...

How's the disimpaction going, ellenbrody?

ellenbrody Sat 07-Apr-12 22:11:24

We've dropped down from 10 to 5 and halved the Picosulphate until I speak to the nurse on Tuesday, poos still like 'gravy', am not sure what we're aiming for, but a bit more solidity without being hard?? Thank you for asking!

Tweedledumb Sun 08-Apr-12 07:36:34

That's exactly what you're aiming for; hard enough for her to control, but soft enough for it to be comfortable and keep flowing through. I'll keep everything crossed that the maintenance dose goes well for your DD; let us know how you get on....

ellenbrody Fri 13-Apr-12 10:11:26

Tweedledum, how did the consultants appt go? It was this week wasn't it?

Tweedledumb Fri 13-Apr-12 18:56:26

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 smile.

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 hmm.

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....?

Tweedledumb Wed 18-Apr-12 09:46:03

Oh no - I've killed my own thread grin

Just to see how everyone else is doing - hope your DC are doing OK...

ellenbrody Wed 18-Apr-12 20:40:10

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'!!

Tweedledumb Thu 19-Apr-12 13:08:40

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 wink

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 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 !

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.

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