Hi, havent been on here in years so hi to everyone, i have secondaries to the bones and i use to take 48 pills day and methadone twice a day morphine which i could take every hour and ketamine nothing was working so i decided to come of all pills and see if pain got worse but i stayed on the methadone. My pain has got no worse and its great not to be having to take all that medication in one day as i was so drugged up and so tired all the time and still in pain, but the problem with he methadone is i get sooooooooooooooooooo constipated.
I have tried everything, senna, movicol, docusate, lactolose and a few other things nothing works no matter how much i take. In the end i get so constipated where i havent been to the toilet for months on end propally i end up in agony to the point where i have had to call an ambulance out b4 and been admitted to the hospital where two hospitals daid they have never seen someone so constipated. I saw a bowel specialist and he did all the internal tests but said i had ulcers due to steroidal tablets and i had to avoid them. However i havent taken those types of pills now for well over a year and still suffering with constipation. I have heard this is VERY common with people who take methadone so i wondered iof anyome else takes it and do they suffer like i do if so what helps u to not be constipated??? I HATE it my stomache swells up and im sooooooo blocked up that i cant eat more than a coupke of mouthfuls and then i feel sick and am full. i can go months were i only go to the toilet a tiny bit. PLEASE HELP IF U HAVE THE SAME PROBLEM AS ME LOVE CLAIREMM
Goodness, you poor thing. I had terrible constipation during my first bout of cancer, whilst I was on chemo, so I can sympathise - but nothing to the extent that you are having. I also take codeine now and again and that causes constipation - even with laxatives - but nothing on this scale. I don’t take them on a regular basis so the problem is never too bad.
I’m plucking ideas out of thin air for you - and you’ve probably tried them: stewed prunes, strong coffee ( a double espresso), a cup of hot water in the morning. I hope someone can come up with some better suggestions.
I know this must be deeply depressing and incredibly uncomfortable, I hope someone will provide a magic solution.
Alison
Hi Claire,
So sorry to hear our problems, it must be awful as well as coping with the pain. You have probably tried this but a glass of warm orange juice some times helps.
Love Rosie aka trash xx
hi Claire,
long time no see 
but sorry that this sort of problem has brought you back. Like you I have struggled with pain issues and too much heavy duty pain meds, but this is the first time I have come across someone worse off :(. I did get as far as trying ketamine under the supervision of the hospice but on the first dose it made me feel so ill I wouldn’t even consider taking the next one. Like you I also wondered how much of the meds I really needed and which ones were making a difference. By slowly coming off the fentanyl patches I have also managed to get down to an acceptable level where I am not falling asleep all the time.
BUT I have been very fortunate that nothing has caused constipation. How long is it since you came off all the other meds? I am just wondering if it isn’t long enough yet for your bowels to get back to normal. Also you mentioned a bowel specialist but are they still seeing you? It sounds to me like this is outside of oncs experiences when it gets this bad, and they should be referring you to the specialists if they haven’t done so already. I don’t think “what works for you” sort of answers are going to help when things have got this bad. I really hope Claire that you find the help you need to get this sorted.
Dawn
xx
I have had constipation problems for years and tried Oxypowder which worked but was very expensive,I then found Pure Magnesium Oxide powder mixed with orange juice,much cheaper than Oxypowder but contains the same ingredient.My Oncologist gave his blessing to use it during chemotherapy,I purchased this product fro a1msm.co.uk oxypowder is oxypowder.co.uk.I also found taking Udos oil was also a help in lubricating the system.
Mavis xx
Hello Claire,
I don’t have the same problem but I work with young people who because of mobility issues would quickly become severely constipated. Under medical supervision as a matter of course they are given glycerin suppositories a couple of times a week which stimulate muscle action in the bowel which results in evacuation. I’ve no idea if it would be indicated or advisable in your case but just wondered if any of your medical team suggested this?
Hi Claire - so sorry to hear you’re struggling with both pain and constipation - I also think you might need to see a bowel specialist about that right now, but just had a thought: when I was first dx with bone (and liver) mets in 2003, I was v. constipated prior to starting treatment. Apparently, bone mets can release calcium into your blood, which (somehow?) leads to constipation. Are you having an IV or tablet bisphosphonate for your bone mets? If not, do try to go onto one, if possible; if you’re on one now, maybe a discussion with your onc about a change of drug? Also, and I’m sure you have heard this a million times, but is it possible you might be dehydrated? We don’t need to drink gallons, but maybe up your water intake by a bit to see if that helps, once you get the immediate problems sorted.
Finally, here’s a recipe for “go-cake” from a forum user a couple of years ago:
“GO CAKE"
4oz All Bran, 5oz sugar, 10oz mixed dried fruit (basically whatever is in the cupboard – use a nice mixture) – apricots, sultanas, cranberries etc, lots of chopped prunes for extra “GO”. ½ pint of milk 4 oz self raising flour. Put All Bran, sugar and fruit into a bowl, mix, add milk and allow to stand for at least half an hour (while you recover from the physical effort so far). Sieve in the flour, mix well and pour into well greased 2lb loaf tin. Bake in moderate oven (180 degree c) for about an hour, until a knife comes out dry. Cover with foil after 30 mins if its browning too much. Turn out of tin and cool. Serve in thin slices with butter as thick as you like it!
Marilyn x
Hi Claire,
I haven’t posted on here before. I have recently been diagnosed with lung mets following mastectomy in 2008. I saw your post and wondered how many movacol you have been taking in one day. You probably know and have tried but you can take as many as about 6 in one day. Even 8 can be taken if you are impacted but you should build up to this if you havent taken more than a couple in one day before.
Hope if this doesnt solve your problem that someone comes up with a remedy for you.
Take care. x
hi Everyone again thank u all so much for your reply’s i will def try the loaf recipe sound good. I was refereed to the bowel specialist a few years back he was fab I had to drink the horrible drink that makes u be violently sick and fast for a few days so your stomach is empty he did all tests endoscopy etc which were not at all pleasant just came back that there were ulcers on my small bowel which he thought were due to non steroidal pills. He said i had to avoid taking them and he put me on antibiotics i was kept in hospital for a good few days and when discharged he said if i had any problems again in the future to get bk in touch. SO im going to get back in touch after xmas i have just asked my GP for some more of the antibiotics. Other than that tho i dont think they can really do much it is the methadoine i think that is causing all the problems and i dont really want to come of it as it is the other pain relife that has helped since i was diagnosed with bone mets bk in 2009.
One lady asked if i had tried taking more movicol and yes i have 
i was told normally it maximum 6 a day but they let me take up to 9 a day and still didnt help at all. Its horribvle as i am soooooooooo blocked up i havent cleared my bowels completly in a good year or more I can go a whole week or more and only go to the toilet the tinyest bit, its so uncomfortable as my stomache reallt really hurts some days and i cant eat i have a few mouthfulsd and am full and then feel so sick, yet i seem to be able to handle sweet foods i can eat loads of chocolate, crisps, biscuits all day long and not feel full, my stomache can just seem to handle them much better maybe its because u burn of sugar and fats quicker LOL i just dont want to put on loads of weight
I will try drinking a gladd of warm water ion the mornings as ive heard that helps and also try a high fiber diet fingers crossed things start moving over xmas lol
Thanks again everyone for your help xxxxxxxx
Oh Claire, how I sympathise with you, brings back many horrible memories. I was on Morphine and bunged up to the eyeballs, nowhere near as bad as you sound, but it was horrible. In the end I stopped taking the Morphine, because I couldnt cope with the constipation. It was so bad I was prepared to put up with the pain, rather than the constipation.
Whilst I was on though I think I must have bought every laxative in the chemist, and tried every remedy that I could find. I even took 6 Movicols in one go once, but all it did was give me the most awful belly ache. I dont know why Movicol is the laxative of choice for people on opiates, becasue it doesnt really seem to do anything.
I eventualy sorted myself out with a combinationn of glycerin suppositores and Bisacodyl, and I still keep a box of both in the house, just in case.
I’ve made a note of the Go cake and the Oxypowders for future reference.
You could ask your doctor for some strong enema’s, they might give you some relief. Hope you get sorted
Jane xxx
Hi Claire
Just wondered if you had tried Ortisan cubes which you can get from health food shop and also eating liquorice which you can buy from Lakeland Plastics which they do in all kinds of flavours. Sometimes the natural things will help in addition to some of the ‘potions’ you have tried. Anything is worth a try. Hope you have some luck.
Jessica 500
hi
I have been taking 8 cocoemol a day and the pain did not seem to be any better.I was also so fed up with the constipation ,stomach cramps and bloating that over Christmas I just took parecetomol and diclofenac.The pain levels were not much worse,mainly because my pain is caused by being active and doing things so I went on strike-no cleaning,Oh cooking and genarally chilling.Could not go too far anyway as i needed to be handy for the loo.Result I have lost weight and bloating has gone!
Am going to discuss pain control when i come back from hols as I felt so much better,just think I will have to take something as I can’t spend rest of my life on the sofa.
Lucinda xx
Hi Claire
I have suffered badly with constipation with most of my chemos and had to resort to the Movicol which I agree is horrid.
Since July last year I have been starting each day with a glass of freshly squeezed vegetable juice. I know it sounds horrible but as long as it is chilled (keep the veg in the fridge) it actually tastes very nice. I have no problems with my bowels now and feel much better overall for it, less sluggish and yes much lighter and brighter generally. If anyone is interested I usually juice the following together: carrots, apples, piece of root ginger, a quarter of fresh lemon, couple of sticks of celery, couple of handfuls of spinach or some broccoli/cabbage. It’s a lot nicer than Movicol!
Sue x
Sue, Do you have that as your breakfast, instead of cereal etc, or is it instead of breakfast?
Isobel