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!

Hi Everyone
Still improving day by day.So much so,that we are going away for the weekend,and we are very excited about that.I rang the Manager of the Respite Unit and also followed it up with a visit to emphasise how we dont want his toilet routine to go by the wayside.He is not producing anything in the toilet at the Day Centre.He waits until he comes home.However his nappy is no longer soiled throughout the day.In Respite he is in for 3 nights.No solid form yet,he is on 6 movicol a day.Lots of food with skin on it as GP advised,tried jersey pototoes,kiwi fruit-enjoyed all that.Everything going in the right direction,I am so happy and relieved at the progress so far and hope to post photos of before and after shots of his tummy area.The most amazing and thrilling part is the increasing sensation of his muscles,which means he is regularly pooping in the toilet 3-4 times a day.He enjoys going in there and been in control of his own body movements.He is so proud of himself and we are stunned that we have got this far.Its like been in love!

happy for you :)
I mentioned flaxseeds earlier, what they do is soak up excess liquid and you only really need a few, literally 5 or so at a meal and you would most likely see another positive change AND they are also antiinflammatory.

I am quite certain that in time you will be able to decrease meds and improvement in the digestive system will show up in behavioural areas too - have seen it in my ds. I was so blown away by how much can be done with food that I am totally hooked on the food approach and never tire of talking about it.

my dd suffered chronic constipation when she was younger. she was on high doses of lactalose which rotted her teeth,then movacol which we found to be great for her.
in our local hospital there is a constapation clinic with a specialist nurse. worth asking gp for a refural!!! ours didnt want to but we had to keep pushing him!! he thought it was just due to a bad diet!!!! grrrrrrrrr!!!
it turned out to be more in the mind with our dd and thankfully she has grown out of it now!!!!

That is so good to hear! If you consider where he was a month ago and where he is now, who would have thought it?

who would have thought it with bells on!
Thanks for the advice nightcat.We went away this weekend and while there we realised we had been running on empty for ages,due to all the anxiety regarding our dss chronic constipation which we had been going on for months.Thank you nightcat (will follow it up),ginge and particularly Hansiemom.Your gentle post lifted my spirits and made me more resolved to persevere with the toilet routine. I didnt ring the respite unit while away because no news is good news and if they had said he was upset or whatever it would have ruined the break.
I rang at 8 last night and was so delighted to hear that he had been going on the toilet successfully.Also eaten well,and no epilepsy episodes,even no tremours.So all good.Cant wait to get him home and see for myself how he is.As you are probably aware,you only need take your eyes off chronic constipation for a minute` and things go back to square one.
However,yes Hansiemom,when I first wrote the post I was at rock bottom,and never thought we would get this far,in my wildest dreams.
Thank you x

Hi Jardy I'm brand new here (in fact this is my first post ;-)) but picked up on your troubles because I suffer from the same thing (mine is related to surgery and I didn't suffer as a child, I had a colostomy bag for a while and still struggling) but I can totally empathise with what you and your son are going through. The rounds and rounds of laxatives, build up after a few days, awful discomfort and distention etc etc... all sounds awfully familiar. I'm assuming you've seen consultants and specialists and had testing? it sounds to me (although I'm no expert!) like he has colonic inertia.

Have you had a colon transit test done? surgery IS (and should be) a viable option and even though it sounds drastic, what your son is going through is awful and can be treated. I have also heard people have success with the ACE procedure (although he could have an ileostomy and even his colon removed). From a personal experience, there is very little dietary change that can help.. other than avoiding high fibre foods (sounds odd, but it makes the bloating worse) and stick to low residue (generally highly processed and easy to digest stuff!). Movicol does nothing for me.. I take endless senna (15 tabs per day) and have resorted to picolax (prescription bowel prep) in emergencies - fairly fierce but works. I'm currently on a brand new drug called prucalopride, but it's not licenced for men (!).

I go on a fantastic forum www.healingwell.com where you will find other parents/people in the same boat and people who have a huge amount of knowledge and experience. Try the 'ostomies' forum for the most useful info on constipation/inertia or try posting a new thread. Hope your spa break helped you as it sounds like you're under huge strain. I'd hunt out a good surgeon and get some more advice - you (and him) don't have to suffer like this. I have a name of a top Prof in London and there is a specialist hospital in London who are the 'bowel expert's in the UK.. if you wish to contact me via email. Take care and good luck.

Hi tunbridgewellsmum,thank you for your comprehensive reply.Wow what a journey you have been on!We are due to see a Gastrologist.Now things have settled down,I would like to persevere with a gentle approach.All the surgery sounds very scary.Its the management of wound sites etc that would make me feel anxious.I am hoping things wont spiral out of control again for a while.I do worry about the future and how his chronic constipation can be controlled,so thank you.

nightcat,got some flaxseeds.Not sure how much to put on.I put two tablespoons in his yoghurt and he loved it.However my dh noticed it said make sure you take with plenty of water,so tonight I just put two teaspoons in.His tummy is improved and he goes regularly to the toilet but only produces liquid,so hard to see how much is coming out.It is fantastic to see his flat tummy and his improved health.He is on 2 movicol in the morning and 2 in the evening and we are to see the gastrologist in one month.