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!

jardy, I wanted to say your dh is a saint (well, you both are), mine always left me to pick up the pieces and only really started responding to ds when he noticeably improved (and my ds toilet habits didn't even come anywhere close to yours).
I agree with HM above, make the bathroom a pleasant/fun place to be, whatever it takes, think laterally as much as you can, whatever would surprise him in a nice way or something sequential to start building a habit.

I also think you need to be less direct with drs, ie don't say that he is constipated or they fob you off with the next set of meds, but maybe that you are worried why his tummy is like that as it surely must look unnatural. This is because I think it could be not just constipation, it could be lots of reasons, inflammation, enlarged spleen/pancreas/liver/lymph nodes that could be causing the blockage - if it is a blockage.

When I eat wheat I get bloated tummy and it's not like constipation or wind. Some people say that when they eat wheat they are retaining water, but of course it's not like squeezing the sponge, if he has inflammation in the gut, it will be a swelling and it might cause a blockage. My ds when little had a distended tummy (much later I realised it was due to wheat), but dr at the time said, oh he has swollen lymph nodes. The enlarged lymph nodes can cause blockage but not in the same way as constipation.

Good luck and don't give up.

Hansiemum and nightcat,thank you for lovely encouraging replies.
I am going out shortly to get the bubbles,and I will set up his dvd player.
Yes I do need charity shop stuff.You sound devoted to your GC!
Thanks nightcat for telling me not to give up,I will take on your tips re:constipation.Not a very sexy subject for GP!Nightcat,my dh is great with my ds but could do with a bit more commitment to the sitting on the toilet thingy!Great with clearing up after him though,he rolls up his sleeves and just gets on with the mopping up of the gallons of liquid poo,without complaining.Obviously he should have got a job in the Elephant House![cgrin]
Poor Royal Couple btw!

Some great progress to report,we have got him sitting on the toilet and showing the beginning of straining faces/noises and poo dripping out of him into the toilet.This is with the aid of posters,bubbles,and push button musical toys.Everytime we hear a plop he gets the reward of the dancing halloween skeleton,which he loves.Tummy still very swollen,doesnt look any different but its a start.Amazing that he is even sitting on the toilet at all,after his violent resistence for many years.Another great thing that is helping is that we have a new toilet with a push button behind him,which he cannot reach.Before,he would compulsively pull the chain.So we never saw any result,if any.I cant tell you how much joy it gave me to use the toilet brush today.Hurrah!Way to go,but its a great start.Dh amazed and encouraged too.Thanks everyone

Wow that is very encouraging!

Just caught up, jardy...I feel your joy!

Sorry if this has been mentioned but until recently I had no idea you could get different flavours of movicol. Ds likes the chocolate ones and there's fruity ones too.

Also we've found found benefiber helps.

Bubbles. Who'd have thought it, eh? Keeping my fingers crossed for you

Thank you magso and tallwivglasses!
I will investigate the different flavours,at the moment he has lime flavoured movicol only which I disguise with cordial,but he still hates it.
The most encouraging aspect is him sitting on the toilet,that has to better for him.Also my dh`s pleasure at seeing him sitting there making an effort.
Today he had no epileptic fits,and walked around the park instead of waddling with this huge protruding belly,and he took an interest in his surroundings instead of just concentrating on putting one foot in front of the other.
I so appreciate all the messages of encouragement,and concern.
Hoping for more progress over the next few days.

Hansiemum,thanks to your message I dug out an old soft toilet seat which was abandoned years ago due to my dss violent protests at sitting on the toilet. It is just a basic foam filled one,but I scrubbed it up.I put a soft cushion at the back of the toilet.I put music on and got some bubbles.I put a small low seat down for my ds to position his feet,ie the correct posture.I left my dh in there with him.Came back and found my dh SAT on the low seat MEANT for my dss correct positioning of feet,opposite my ds and blowing masses of bubbles at him!Well it worked!The important thing is that my dh was just as happy to sit there as my ds,that made all the difference!Big thank you to you for inspiring me by your thoughtful,post,and everyone else,thank you.

wonderful, what a result!! really happy for you jardy!
and it will be a massive relief for your dh re: cleaning, not surprised he was happy too! These small improvements should add up and hopefully keep adding up!

Isn't it cool how mums are full of ideas, I would have never thought of bubbles!

that was meant to be in the last line [blush}

Hi nightcat,I am re-reading your interesting posts carefully.This morning ds had weetabix,dh has promised me he will have porridge tomorrow.
Re-reading my old posts,I don`t think we have been consistent enough with giving our ds 8 movicol in one litre of water a day.It has probably varied between 4 most days and more recently 6,then 8 yesterday and today when we started to see an improvement.We need to be more consistent and dedicated to him sitting on the toilet,taking on board the ideas.
My dh is supporting me more with the toilet aspect,that has delighted me as much as the improvement in the output!

What encouraging results! Progress everywhere! It's interesting about the lack of seizures and your DS being more interested in his walk. He must feel better and it shows!

Thank you! I am not sure why he still has this very protruding tummy though.It`s disappointing when everything else is going in the right direction.I asked his Day Centre if they would put him on the toilet every hour.The Manager of the Day Centre rang up and said that they could not afford the staff to put him on the toilet every hour,however they will periodically sit him on the toilet.I was disappointed,but pleased that he will be put on periodically.In the past they have been unable to apply creams etc due to regulations,so I felt relieved that at least he was been taken.
When he came in I tried to take him to the toilet,he protested a little bit,and then he allowed me to sit him on the toilet.Then he copied the Support Workers language,ie Well done,keep it up etc etc.He did a few liquid results,but DEFINATLY showed signs of straining

glad things are improving, sounds like he's getting a bit happier/resigned to more attempts on toilet.

You could ask staff to put him on toilet about 20 minutes after he eats. Does he have snacks? If so, maybe after those and lunch. Good for him for cooperating on the toileting!

With encopresis (back to that!) a person can have a hard mass of feces and liquid stool can get around that. Did someone mention Milk of Magnesia and that it draws water into the stool? An X-Ray would show that. I'll research.

Hello Hansiemum,and Totalchaos,we are delighted that ds is sitting on the toilet and now has progressed to sitting down and straining,also quite happy to sit without the soft seat and press the toilet button at the end.
My dh and I are very encouraged by his excellent progress on the toilet,but will still pursue the gastroentrologist and hopefully NOT BE FOBBED OFF.
But real measurable progress,thank you!

Excellent progress! Delighted for you. Agree next step is specialist.
I found the most helpful thing once sitting was possible was the (telephone) support of the constipation team of nurses - who could speak to ds specialist easier than I could when problems or queries arose. Frankly the sitting was the beginning of getting control of the situation from our home point of view. However (IMHO)the longstanding encopresis needs specialist management.
Good luck!

Thanks magso.Things still moving slowly,very slowly in the right direction.He accepts sitting on the toilet,now without aids (to keep him amused) but just to concentrate on the job in hand.Plenty,and I mean plenty, of liquid spurts out of him each time he strains.The progress is so exciting.Even my dh is enthusiastic because he is so amazed to see how much progress he is making.Tummy is improving.All this is in baby steps,but I am overjoyed.He is seeing the GP next week,and WE WILL NOT BE FOBBED OFF (REPEAT!)

hi again magso,I totally agree you with regarding my dss encopresis. I spent some time researching it on the Internet.We are doing things right (I think!)regarding his management but it does make me feel sad that it took the support of mumsnet to really get down to the nitty gritty.In an ideal world we should be receiving practical support and advice.In a way I am not bothered because we can do things at our own pace,without the hassle of phone calls,and appointments.Also the community nurse suggested way too much laxitive before and the poo was pouring out of him in rivers,and the bossy attitude got to me,as though we were helpless children.Whereas Hansiemom,nightcat,and magso give good solid practical advice and gentle encouragement,so I dont feel stoopid

9month pregnant lady tummy looks more like 5 month yay!

oh good, glad things "are on the move"

Hello,ds is still improving very slowly.He is going to be referred to a gastrologist,no problem today about getting him referred.I never dreamt he would do so well sitting on the toilet.He is getting into a great routine.
I worry about what will happen when he goes into respite,but I will over emphasise the importance of him been taken to the toilet.Thank you for you kind support.It made all the difference.His movical is been reduced to 4 to 6 a day to firm things up a bit,from liquid to sausage shape,which will be wonderful.Thank you so much again,to all the kind and concerned (and effective posters) xxxx

glad things are improving, hope the gastro can get to the bottom of it (no pun intended!)

hi jardy, glad things are getting better, also glad you have a referral :)

Can you get caregivers to sit him on toilet 10 minutes after eating? Maybe after breakfast and supper. So great to hear poops have some shape now. It probably gives him a sore anus to go liquid all the time, it does me when I have diarrhea. Once I had to take prep for colonoscopy and had to keep returning to bathroom. People say the prep is the worst thing and they are right!

Hi how many sachets of movicol is he on a day ? My son got bad a while ago and had to have an enma to help get him started as he started vomiting as physically no more room and was in great discomfort.
Have a sen community nurse helping us to manage is movicol have u been given a list of high fibre foods ? Could try and load some on here for u if would help ?