Chronic Constipation

[jardy]

Any tips for this distraught mum of a 22 year old with SLD.
Chronic constipation gone on for so long,just soiling,spoon feeding him Movical all through the day.He is in nappies,developmentally about 12 months.We are visiting the GP regularly,the latest advice is to give him something called Bisacodyl,two little tablets at night.He is very impacted and looks like he is 9 months pregnant,so hard to dress him.
GP wants to avoid faecal incontinence,but I am at the end of my tether.
Thank you!

i have not read all of the thread, but if no one has already suggested looking at the www.treatingautism.co.uk website, (regardless of whether he is on the autistic spectrum). lots of stuff on there about gluten and casein intolerance which may be of help.

Thank you for your really helpful replies.We are still researching all the options.Had a lovely time yesterday and feel much better for it,it is obvious that the whole family benefitted from the grouchy mum being out of the house for the day!

Pumba,just been googling ACE,sounds very interesting.I am just wondering whether it is appropriate in a young man of 22 who will not sit on the toilet.I think I need to work on my sons sitting down skills for the toilet!

Hi Jardy, just thought I'd add - dulcolax (sodium picosulphate) along with movicol works for ds most of the time (but we too have use an enema on occasion).

Keep going back to GP and insist on a specialist. I'm convinced some GP's don't take this problem seriously if the person has a learning disability. I wonder how they'd feel if they hadn't pood for a week!

The poo running down the legs doesn't necessarily mean he's unblocked...our mistake was to cut right back on the medication then we'd be back to square 1. The dulcolax acts as a stool softener. Ds has anything fom 0-3 movicol sachets and 0-10ml of dulcolax a day...depending of frequency/consistensy of poos.

You have my sympathy. I have been caught scrubbing the floor (we don't have carpets anymore) wailing 'What did I do to deserve this? I must've been a mass murderer in a past life!'

Good luck

Hi tallwivglasses,your post made me laugh.No GP appointments for two weeks,due to backlog because of bank hols and royal weddings etc
I said I will take him to the walk in centre and they said well ring wed so I will see what I get then.I knew the running down the legs thing was overflow.He hasn`t gone properly for MONTHS not just a week,(I wish).
Its very hard when your ds has sld and you cannot reason with them,he goes beserk at the sight of an enema and in any case they are not working,the impaction is way far up.I keep praying for an improvement.
If you read the NICE guidelines on chronic constipation I think our GPS are following everything to the letter.Thank you for the comforting replies

ok no idea where to start reall,y but my little girl is nine and doesn't have any other problems other than chronic constipation, we spent many years on movicol and all sorts of laxatives but never really got anywhere. We still aren't really sure what has caused her problems but certainly the longstanding nature of it has resulted in her having very little sensation. She had an ACE done about 2 years ago, they used her appendix and we place a tube into it every other night and use water and a stimulant to try to empty her bowel, originaly she would sit on the toilet and poop normaly, but she doesn't seemed to be able to actually empty her bowel so we eventually had to opt for a colostomy which isn't a great solution but for now it is what we have.
the surgery for her ACE wasn't too bad and we were only in hospital for 4 days she accepted it all very well and for the first six weeks they leave a tube in to establish the tract and then that tube is removed in clinic and then the nightly regime of putting a tube in and doing a wash outs starts. The ACE certainly works well for most kids and our little one is quite unusual in that it didn't really work in fact her surgeon says he can count on one hand the kids that haven't found the ACE successfull. let me know if there is anything else you would like to know. xx

Hi Pumba,that is really helpful.It is a comfort to know that there are other parents going through what we are going through.I do have a dd and when she was going to Ballet there was a mum with a little girl (very bright,no neurological difficulties at all) and she couldnt go to the loo and needed operations to remove the poo regularly.I lost touch,at the time my ds was not in such a chronic condition with constipation.I never thought he would become so much worse. Did you abandon ACE as it were,for the colostomy and how is your little girl now.What a worry for you btw,I am so sorry to hear about your little girl. My ds has also lost the urge.He did a few grunts tonight and pushed liquid out,I was thrilled to bits.Its a start!Also we are trying the wheat free and gluten free diet,although my dh is a bit sceptical.However he usually has weetabix in the mornings but this morning he did not and he seemed brighter.Also,although he has a cold and a nasty cold sore,he is much more cheerful,and I wonder if there is a connection.
Thank you very much for replying Pumba.

hi Jardy
My OH was sceptical too (for at least a year he kept saying it was all a coincidence).

However, he has eventually realised how incredibly he has improved and is now a convert. The changes are subtle but they just keep getting better, for us it has truly been a miracle, the neuro improvement has been especially amazing.

Hi we still use her ACE as her colostomy doesn't work without flushing her ACE, it's not ideal but it kind of works, I think constipation is hugh underestimated it has had a huge impact on my daughters life !! People often ask what's wrong with her and when you say constipation they justook at you blankly. !! If I had a pound for everytime some one suggested we feed her more veg I would be very rich !!!!! Hope your son starts to improve soon , in the early days my little girl would often go to theatre to be cleared out !! Xx

First of all my dh spent a lot of the night cleaning up the explosion of liquid poo.Nevermind the ruined bed linen etc which happens on a regular basis (those duvet protectors dont do it for us,too weird and make the duvet ride down)My dh said there was gallons.Today there is a slight improvement,in his very distended tummy.There ought to be a monumental improvement,but nevertheless I was delighted.I dont think we have been giving ds enough movicol.He should have been getting 8 sachets in 1 litre of water a day.He has had the litre but probably only 4-6 sachets.He had 6 sachets today.My dh says if he has any more than 6 he wont be able to go to his day centre.He has already been banned from swimming,due to the brown liquid in his wake.He was wearing special new incontinence trunks etc.I was disappointed,he so needs the exercise,which is partly why he is in this state. nightcat,thanks for your comments.My dh is a bit of a stumbling block,he does all the food ordering and cooking.He has given him porridge for two days on the trot,I can see an improvement.We are going to the Doctor tomorrow.I will ask about the wheat/gluten theory and see if we can get him tested.I am still really excited about the thought of him improving on wheat free/gluten free diet.What kind of neuro problems does your lo have? Where did you see the improvements?I feel my sons grasp of language is better, overall brighter.Just after two days of porridge!
PUMBA:I could have written your post myself,people say try bake beans,All Bran(!).Also I am sorry to say it but we did have paediatric community nurses coming round regulary.Lovely people,but until you live the situation you have no idea what a strain it is and how very difficult it is to persuade your child to sit on the toilet.My ds just wont,he hates it.Also do any of you feel the usual medical defination of chronic constipation is not your child,eg foul wind,pellets etc.My ds has never had these symptoms.He just does not go for months and months,apart from smearing.Any more personal experiences or tips really welcome.I do slice up a really juicy orange for my ds and give it to him oxo cube size,that seems to have a good effect sometimes.Thank you very much again [csmile]

jardy, you might need a gastro dr, although you probably have already seen them? Having said that, we did it with v little dr support, I was quite desperate and all tests were neg anyway. I just kept reading about anything that could work on neuro problems. My ds was given a dx of progressive neuro deterioration, ataxia, progressive loss of pretty much everything. He was losing speech and hearing, falling over, uncommunicative and unresponsive. He also had constipation and various skin symptoms, it was as if he was shutting down in all areas.
I believed drs that there was nothing we could do for 10 years and watched him slipping away, until I found out there was a chance with going gluten free. Best bit for me is that I was able to try it all myself as I just had to know if there was any hope. I just did it overnight I was so desperate to know. Within a week I could see slight improvements, it was as if someone flicked a switch in his head and he started responding better, the rest is history, it's been 5+ years of the diet and I don't regret one minute - neither does he.
There is a lot of great reading stuff about, my ds has gluten sensitivity (intolerance) and tbh there are no tests as such, just a diet trial. My ds eventually had a gene test for gluten and he was found to have the gene consistent with gluten sensitivity.
The inflammation in the gut will subside when wheat clears out and the gut will relax and he should be able to clear out the content easier. If you add a few flaxseeds to each meal you might find that he will need less of meds too as they effectively lubricate the gut walls. As he clears out the bowel he will brighten up as toxins clear out. So much can be done with foods, worth trying :)

You have my sympathy. Ds ( now 11 with mod/sev LD and Asd) has suffered chronic constipation since infancy and frankly it was one of the hardest aspects. We are lucky in that things (very) slowly improved once we got support from the constipation team and I was able to get ds to sit on the loo ( he still has his bedtime story in the bathroom whilst the bath runs) Getting him distracted/enjoying sitting on the loo was the main step - along with changing to movicol and watching his dose ( to ensure regularity and allow the bowel to shrink slowly) very carefully. I have no tips with the immediate problem -but do find a waterproof duvet without a cover ( ds wears thick jersey PJS that fully cover) works Ok. I wipe the duvet down every morning. It tends to be a bit lumpy so may not work for a taller adult. I used to use a giant clothes peg on each corner before giving up with a waterproof cover! Yes ds never fitted the usuall definition of constipation. I think his insdes adapted for extra capacity! Ds loves clementines and will eat a whole pack given half a chance and I do think that is fortunate. Pears are good too.

I think your son needs to be cleaned out now in hospital. I appreciate that a lot has come out with the movical. Still you don't know what is left.

Could he have encopresis? A person, usually a child, starts withholding bowel movements. Feces build up, and sometimes liquid poop will seep around obstruction. They soil and don't even know it is going to happen. Treatment is to clear out obstruction. Then take movical regularly and have patient sit on toilet at regular timesafter meals is good as the gastrocolic reflex kicks inyou eat, then want to go poop. Also evening is a good time to sit. Would your son cooperate if he had a handheld game that he only gets at toilet time?

A gastroenterologist would be an appropriate doctor for your son.

Could he live in a care home? I think it is way too much for parents to care for a person like this. I do not see how you have done it for 22 years.

When your son is cleaned out, he must feel so much better. What was he like years ago after they got buckets of feces out of his body?

Jardy, would your son sit on the toilet if he had a special seat provided by an OT? You can get one with a harness, arm rests and a padded seat that can be wheeled over the toilet. It's easier to have your bowels opened properly if you sit with your feet on the floor.
If he really won't sit on the toilet it should still be possible to have an ACE procedure if that's appropriate for him. It will be interesting to hear if a wheat free diet helps.
I hope you're still getting community nursing support, and that everything hasn't stopped since moving to adult services.

Pulsed Irrigation Enhanced Evacuation (PIEE) sounds like what you are talking about. I googled irrigate bowel impaction and this came up.

jardy - I am a specialised continence advisor and work for a charity (PromoCon) that provides impartial qualified advice and information regarding bladder and bowel problems - we are moving offices next week but the phones should be up and running by the end of the week 0161 607 8219. Do give us a ring if you feel you want to talk to somebody about your son's problems - even if it is to just let off steam! :-)

Hello everyone,things are about the same.We did visit the GP but still have not got the referral to the gastroerologist.Instead to try some sodium picosulphate capsules.He hasn`t got an obstruction,however he is absolutely full of faeces.I was so interested in the PIEE technique,thank you Hansie.potterynursey,I know your organisation,may have even gone to hear you speak.Thank you so much.What to do with a very powerful man of 22 who will not sit on the toilet?I am so grateful to you all.Had a lovely day yesterday with the celebrations,but my heart sank when my sister exclaimed,oh dear,what is wrong with his stomach (not seen him for 12 months).He looks so unsightly and none of his clothes are fitting,as his tummy is protruding now so much (like 12 months pregnant).We are working our socks off getting movicol down him (which he hates),throwing away so much bed linen.A bit of good news,I rang the respite unit and they have offered me a weekend respite in september.I am hoping and praying things must have improved since then.

I cannot believe you didn't get a referral to gastro dr!? Can you not see another GP and beg like your life depends on it? I found that with SN they frequently just ignore you, but I prefer a softly-softly approach rather than a full blown row/fight. But I woudn't leave the surgery w/o a referral (we are under gastro).

I know someone with a massive tummy (not SN), but that is due to his v v enlarged pancreas, has your ds ever had a ultrasound for example? Or liver/pancreas function tests? Enlarged pancreas and/or liver can also be a result of gluten intolerance.

If you want to pursue a gastro referral, I would either ask another GP or get a name of your nearest gastro dr and write to him directly describing the problem and begging to be seen. They might not on your letter itself, but if they reply that they they would see you as long as you get the referral then all you need to do is show it to your GP and they won't have a reason to decline.

Hi nightcat,no we couldnt believe it either!I honestly think it is a sign of how depressed and how much little fight there is left in us.I was very interested in hearing about the liver/pancreas function tests.I will mention this.I did write directly to a specialist when we were in a similar situation (although not as bad ) about ten years ago,and that specialist (although quite elderly now) is still practising.He replied to keep up the lactulose,as much fruit as possible etc.However he did not ask to see us.Next time GP appointment,not too far away,we will redouble our efforts.My dh is wondering whether the GPs are discouraged from referring to specialists unless absolutely essential.Is there money involved?We were fairly assertive but were told we would not get much of a different approach than the one the GP was offering.He said he is bunged up,and thats it,address with these remedies,and thats what the specialist is likely to say.

they can do a liver function blood test (LFT) as part of a bog standard blood test (I have these yearly due to being on statins), obviously not going to show as much as a scan etc but might help? Sorry GP wasn't helpful.

is he under any hospital specialists for any other issues, as consultants can refer to consultants in other specialties same way as a gp.

Thank you Totalchaos,I didnt realise.He saw the epilepsy Nurse specialist a couple of weeks ago.We could have mentioned it then.He is eating OK and seems cheerful enough,but looks unsightly.Tomorrow I am taking my dd back to University.I will try putting 8 movicol in a litre of water,and telling my dh to make sure the lot gets down him,during the day.So far he has only been having 6 maximum rather than 8,as my dh has mainly been doing the supervision.My dh says he passed a reasonable amount this morning. Over the years I feel I have acted as a co-ordinator to my dss problems,sending charts into schools etc.I have tried most things.Your fresh ideas have helped.I will try to encourage my ds to sit on the toilet again,thinking about the things that might motivate him to sit eg favourite tape.I have tried in the past but nothing came out,and he struggled with me.I will try again.Its just that my energy levels are so low.<img loading="lazy" class="inline-flex mumsnet-emoji" alt="Sad" src="https://www.mumsnet.com/build/assets/sad-q5SIe0Cq.png">I am 56 and work full time in a demanding job,its hard when I come home in the evening to start again.

apols if this is a silly question, but does he like blowing bubbles, as 1)it helps with some of the same muscles as pooing and 2)if he likes that it could encourage him to sit on the toilet if he's allowed them at the same time. or does he like telly, as you could put a dvd on a portable player when he's on toilet.

re:epilepsy nurse - not sure if she would be able to refer to another speciality, not being a doctor, but if no improvement, there's no harm phoning her up to explain the problems and that you think he's had 1 seizure due to it, as at worst even if she cant help directly she can advise with knowledge of NHS system iyswim.

hope the 8 sachets gets you somewhere. The more I think about it the more I think GP is being unfair, as you have tried a big dose of movicol for a while, and not got much progress.

the poo stuff is demoralising, as you feel so much at the mercy of someone else's bodily function.

Hi Totalchaos,really helpful advice from you! I will pursue your ideas and report back.I did the jug thing and I think that might be helping,he has just done a BO (bet you are familiar with the jargon too!),dh had to throw away his trousers,and socks.JJB Sports trackie bottoms actually,I think I need a pile of old stuff as things are moving a bit.I am going to take a picture of his tummy in a minute.Maybe I can do before and after shots on mumsnet!
Blowing bubbles,the dvd on a portable player.I did think of the DVD player and I will get that up and running asap.The problem is my ds struggles with me and becomes violent when I try and encourage him to sit on the loo,the situation then escalates.I will though try again and I love the idea of the bubbles,for me if not for him,lol!I am going to drive my dd a few hours up North to University now,a bit of respite for me.Thank you so much Totalchaos,I would say things have moved on slightly in a positive direction,certainly my spirits have![csmile]

Couple thoughts: make sure your husband stirs the water/med mix before using.
You could try goodwill for clothes, or whatever thrift shops you have there. I find terrific things there for grandsons. Costs are so minimal there! Does he like soft clothes? My GS have some athletic pants and jackets which are sensual in their softness.
Do you think your DS would respond to a new toilet seat? I'm thinking of a sparkly one, or brightly colored. You could show him it before installing so he looks forward to it. (Said hopefully.) Maybe decorate toilet area with balloons or streamers? Have fun pictures on wall which you change often? Would he like the Baby Einstein videos which young children likeI like them too at least the first couple times! I really liked watching a nature DVD with my young grandchildrenthe scenery (meadow, woods, stream) was beautiful with real animals roaming through it. I think it would be soothing for your son.
Perhaps in his room too, you could change pictures often. A cheneille bedspread made of 100% cotton (not that synthetic stuff!) would feel good to his hands and body and be easy to wash. You could try ebay for a vintage children's one. How about cotton flannel sheets?
I'm sure you'll enjoy every minute of your trip with your daughter!