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!

How long has this been going on? Has he had it this badly before?

AFAIK Movicol is only to be used for 3 days - if there is no boewl movement after that he needs much stronger meds.

I dont want to worry you, but have you considered he may have a bowel obstruction??? Is he jaundiced at all?? I would ring NHS direct and get him seen by an OOH GP...he needs to get some serious meds into him to shift all the faecal matter IMO.

So sorry you and your poor ds are going though this x

Hi there my little man is on heart medicines that darin fluids from the body so he gets very dry and very constipated. We give him lactalose and senna twice a day and it is safe to use. We also if he gets very bad use suposortories for him but thats rare.

I think the snna stimulates the bowel. Harvey is 19 mths.

Regards.

ps you can buy both at the chemist but we get it on porescription.

Hi,thank you for replying.Obviously a bowel obstruction had passed the GPs mind,but he said that it would just reveal chronic constipation.We are persevering with the movicol.He has been on movicol for about 5 years.He has had lactolose and senna when younger,also enemas.He has so much lactolose and senna that faecal material ran down his legs,and we were constantly asked to collect him.A nurse once said that his bowel was like distended tights,and he obviously has no sensation there at all.He is not jaundiced and has a huge appetite.He had an extremely poor appetite for many years until a couple of years ago.The much worse constipation seems to tie in with the huge imput,as there is no output.

So sorry you are going through this i would either ring nhs direct or go to a&e.He really should be seen by someone.x

if movicol isn't working, I'ld push for continence nurse and/or gastro referral. my only experience is with kids movicol, where the approach is to give a huge dose at first to clear things quickly, but I have no idea whether it's the sme with adult movicol. hope something works for him soon, sounds v distressing for you both.

Thank you.I will keep you posted.He is not in pain but it is all very worrying as you can imagine.We feel he must be about to explode.Also he had a prolonged seizure this morning,we think the medication cannot be reaching his bloodstream with so much impaction.Next time we visit the GP we will ask for a referral for the gastrologist.I feel we need an expert opinion.We have tried adult enemas-nothing.

Hi jardy my daughter has this problem and it makes her seizures worse and makes her vomit too.Sometimes we give our dd prune juice and this sometimes works depends how bad things are.I would really take him to see someone sooner rather than later.x

Thank you.We have tried absolutely everything,prune juice,manevak,stuff off the internet.We have been to the doctors every week.Only slight improvement.Thanks for replies.

Can't be easy with SLD, but what's his diet like? If you can try decreasing wheat, the distended tummy is not only constipated but most likely inflamed on the inside. WHen you say he eats a lot, could it be craving for carbs? If he keeps eating wheat-based foods that is unlikely to get better.

My ds had neuro problems and when we removed wheat he picked up physically as well as developmentally. Some people are v susceptible to gluten damage, esp many with SN and it can be vicious circle.

I was blown away by changes in my ds on removing wheat despite celiac tests being neg. As you I was desperate and for more reasons than one. Wheat was causing muscle wasting in my ds and it was bound to affect the gut muscles that cause food to move along, so you are prob right that nothing is moving. If he was mine, I would restrict wheat to one meal per day, ie not instantly as he would react badly to that so you need to take it in steps. You could ask for a celiac test?

I would also say, try adding some ground flaxseeds to his meals, esp non-wheat, they are v gentle on the stomach, have laxative effect AND are healthy in lots of other ways.

Other things that can help are Mg supplements, epsom salts in the bath (can also be taken internally), B vits and mint/peppermint type drinks (in fact I use polo mints when I have a headache coming that I get when I haven't been to the loo for a caouple of days).

Good luck!

frankly if he is impacted... and it sounds like he is, two biscocodyl aren't going to do ANYTHING. He needs a serious clear out regime..

My DS2 was impacted and it took a week in hospital, daily enemas and 12 sachets (in a day) of movicol to start shifting it.. and he is now on a regime of two sachets a day. If the impaction is high up, enemas won't work. Movicol WILL but it has to be at impaction doses..which are massive.

He really really needs input from the constipation team.. yes hospitals have them:) Please DEMAND urgent referral..

(movicol can be taken indefinitely Becaroooo btw :))

i really do think you need a second opinion. Personally i would say that he IS distressed and uncomfortable and insist that he sees a specialist, even if it means going through a&e. Constipation increases potassium levels which increases seizure activity. I have son with severe sld (Angelman Syndrome) who suffers with constipation-he has never had a big problem but several of our friends have been hospitalised and had emergency operations etc-if he is so bloated and obviously constipated then he needs help, not movicol or lactulose etc.

I did reply earlier but the message was not posted.Your messages all make such sense and I am most grateful for your support and in particular the theories.
He is craving carbs,gobbled his Macdonald meal ( we do give him an extremely healthy diet but he got so excited when he saw the big M and for the first time in ages he smiled and smiled,then gobbled down the burger and chips,as if it was a fix).He has been having weetabix everyday,before he had porridge.Is there an connection here,sounds like there could be.
I dont feel I could cope with A&E at present,it hasnt got to that stage.I did when he was about 13,again tickling around the problem at the GP then one night he stopped passing urine and was in so much pain.Called emergency doctor who said give him movicol ( yeah right) then in desperation we took him to A&E.From what I remember he started to pass urine and the problem eased gradually.I cannot remember him being given an enema.However this problem has been chronic,and since he was a baby.
Every few years he would reach crisis,he would receive an enema at the hospital.I am sure once a tube was wound up his back passage for ages.That must have been to get at the high impaction.However whenever I have tried to explain this to a nurse they say they have never heard of such a procedure.Also,each time he went to the hospital the nurses would say oh my god at the amount that came out,bucket after bucket after bucket.Also,what do you make of this,the community nurse would tell me to give him masses of lactulose,senna.This would make the faeces POUR out of him,couldnt go out,saturated carpet etc etc.Whenever I suggested to the community nurse he might need an enema now and again she would get angry and ask me if I had ever had an enema,and did I know how painful it was.Eventually we saw a specialist and he said in fact he DID need an enema sometimes and if he didnt it could be very dangerous for him.
We are persevering until we see the GP next week.He doesn`t seem in pain at the moment and is passing loads of urine.

Your DS sounds in such a state with his constipation, it seems such a minor thing to some people but when this sort of thing happens its a nightmare. The problem with impaction is it will eventually cause a blockage and not only that but the toxins in the fecal matter are reabsorbed into the bloodstream and can make people feel very unwell. I think DS will eventually need another enema, and the problem being so ongoing he probably has lost the normal impulses to have a bowel movement. Many people with spinal paralysis have regular enemas for just this reason and if done regularly will keep the bowel clear and stop all that stuff with impaction, constipation and overflow. The GP may be reluctant to do this however as they are hoping DSs bowel will be 'trainable' back to normal.

Thank you sneezecakeesmum,you are spot on and just knowing other mumsnetters know where I am coming from helps.My dh did tell the GP that he felt he had no sensation of going,and GP agreed,however ten years ago when his bowel was clear after enemas,he got into a good routine of sitting on the loo and going - BIG TIME,normal stools,night after night.At this point the community nurses stopped coming feeling it was resolved,but it was only a matter of about 10 days at the most when we were back to square one.At one point we saw a surgeon who said he could do plastic surgery,insert a button,and enemas would go through there but it would be less traumatic than the rear end.We thought that this was much too drastic and refused.The surgeon said it was new form of treatment,extremely new,that we could consider.Has any other mumsnetters gone forward with this treatment.BTW sneezecakesmum,I am really interested in your reply.I wonder how do paralysed people manage,can they live a long time just having their bowels evacuated or what ever.Also my son is not profoundly disabled or has spina bifida,but I have met two parents who have told me their children with these conditions need enemas every day or other day just to have a bowel movement regularly.I think ds need a more proactive and dynamic approach.Thank you for replies,I will keep in touch.I get so low with this chronic ongoing problem which I dont feel the GPs in their youth and inexperience can really grasp.Can I add my ds has very SEVERE learning difficulties,he isnt profound but was mostly in a class with pmld due to his low ability.Have to add he is a character and we adore him!!

As far as I know paralysed people have a reasonably normal life with regular enemas. As they get older though urine infections and pressure sores are a major problem. What the surgeon said about a 'button' sounds a really good solution to regular enemas and if you cant reestablish a normal routine I would look to this. I did think a colostomy would solve the problem but not suitable for your DS at all because of the management problems and too drastic an option. Regular enemas are unpleasant and invasive - the button thing sounds brilliant - minimal risk of infection because the bowel is dirty anyway, not very invasive... sounds the solution if all else fails, but have never personally seen it.

Sounds like you do need a good drs support but I would also try tweaking the diet as medical intervention is OK in emergency but might be hard to sustain on the regular basis and with the right foods I think you can make a difference.
Passing a lot of urine might suggest pre-diabets, which in itself could be a result of the gut overload.

I once read something that suggested some paralysed adults have their stomach stimulated (think by rubbing etc) at the same time each day, to encourage them to "go" regularly, don't know whether thats in addition to meds or enemas etc. agree with monstermansmum that if it's affecting seizure control then sounds like GP is being a bit too relaxed and your lad should see someone with more knowledge. dunno tbh whether the carb craving is relevant, sometimes you can crave things you have an intolerance for but then again think we all have times we crave stodge or junk food.

The procedure mentioned to you by a surgeon is called an ACE procedure ( antegrade continence enema) Basically they use the appendix to create a connection from the bowel to the abdominal wall, with a small stoma through which bowel irrigation can be given
I work a nurse and have known one child who had it done, and it was very succesful. He had constant soiling before the procedure, but is now clean with irrigation every two to three days. Your son would benefit from input from a specialist continence nurse.

Thank you so much.I am under a great strain and these replies are taking the froth off my anxiety.I am so interested to read your knowledgable replies,and will keep you posted.I am particularly interested in the ACE procedure from GRW.We spoon feed our ds his drinks as he is not interested in drinking.He does go to respite but only seems to manage 2-3 days without going down hill.We therefore feel that it is impossible to consider supported housing for him,due to his massive problems with drinking.He has now got to nearly 23 and I feel my mental health and that of my dhs is cracking.Your replies have given me a different perspective.
On a lighter note,and some would not agree,I am having a spa day to myself tomorrow,just taking myself off for the day.This is because I am at breaking point and just want to survive the Bank Holiday without feeling so stressed,spoon feeding my son movicol all day long.Thank you again for your replies which have left me feeling not so lonely and upset.

Jardy its really good that you are having a spa day tomorrow.We all need some time out sometimes.Hope you have a really good day.

I know its a huge step (one that we are having to begin to look at) but have you considered looking at getting some help from careres at home.It may be they could come in and help in the morning or evening to give you some time off.

You do need to take a good care of yourself so you are doing a great thing to take a day off from being a carer. My ds prognosis was +/- like your ds but thankfully he has improved. However I know some families who face very similar problems to yours and I can relate in a way. Funny enough I am plannimg a spa trip myself for me and my ds (physio type stuff).
Enjoy your day!

Hi I have a little girl with an ACE if there are ant questions you would like to ask.....

Thank you for the kind words of encouragement.Things are getting on top of me I can tell,I want to make the best of tomorrow and will try and get an early night so I am not too shattered to take advantage of it all.
Wow Pumba I have so many questions.First of all,when you have a moment could you give me a bit of history.Advantages and disadvantages.I am so interested but please dont rush to reply,as I wont pick up until tomorrow at least.How old is your little girl,and how is she now,was it a drinking problem and then the build up of chronic constipation resulting in something similar to my sons,ie no signal.I am very appreciative of the support,I feel I am clinging on to my sanity,the accumulative effect of worry and too much on has had an effect.Hoping to feel in much better spirits tomorrow.I have tidied the house a little,it was looking like a bomb had hit it so that was getting me down too.Thank you again [busmile]

hope you enjoy your spa break today

ok from adult point iof view( something i been checking out a lot ) there are options regular laxtives to encourage the bowel to empty at set times also theres a enemas but its not as drastic as pipes being shoved anywhere.Small bottle with small spout thats inserted and then squeezed and about 20 mins later you got to go .Many adults do use this all there lifeand saves the worry of soiling

but sound slike he needs some very heavy doses to clear out then need to keep on top of it with regular medication