Life with bowel cancer

Forum user

Anterior resection syndrome

Hi everyone,
First time I've used the forum, recommended by BBCancer nurse who said your support is great. I had low rectal tumour which was treated with radiotherapy, chemo and then anterior resection surgery back in 2011. Although all seems to be ok, I'm finding the consequences of the treatment a bit limiting e.g. urgency, clustering, fragmentation, unpredictability -you know the kind of thing. I avoid veggies and high fibre foods and use loperamide sometimes but still find going out can be tense and so have given up a lot of hobbies and lifestyle choices. Has anyone found anything that helps at this stage ?

Forum user

Hi,
Welcome to the forum and it is good to hear from you. I had the same operation as you only did not need any pre-operative treatment.
I have my moments (as we all do and some suffer far more than me) but on the whole, my bowel behaves pretty well. It just seems to be a matter of luck as to how it behaves in individual people, so far as I can gather. I do not take loperamide (though many do and it helps)and find I have control and critically, can usually wait if needs be so consider myself to be extremely lucky, to be honest- and I eat loads of veg and fibre too. The only times things have been bad was during chemo 18 months later and after operations for secondary tumours when everything was upset again. However, I did decide that I would just go and do stuff come what may but that is not esay for everybody or necessarily fits in with personal lifestyle. I am lucky as mine is a very rural life and to be honest, if I am caught short, I can cope.
It can be embarrassing going out for a meal or something when the nature of our op dictates that you go once and then immediately find you need to go again. But my nearest and dearest all know and I just think that other folk are not that interested (even if they notice at all) that some woman seems to be going to the loo rather a lot.
Gypsyx

wikey

hi sally

i usually need to go to toilet 6 times a day maybe 5 some days. i need to go 2 or 3 times in morning before venturing out, so house based tasks in morning and then outside....

i take one loperamide most days and sometimes more. if i want a quieter day i start taking extra the day before.

i have had about 11 inches of colon and rectum removed, most of rectum gone hence lack of control.... i think you need to experiment more, but i would try a normal diet with fruit and veg and then increase the loperamide ( loppers as i call them) and see if you can get it under control...

best of luck with it

mikey

suze

I'm in the same boat after the same surgery and I am afraid I dont have much cheerful to say on this topic.

My situation is made worse because I had a second bowel op at the other end of my colon and lost the ileo-ceacal valve which can help to regulate flow so when my gut goes into a spasm I literally have to keep going until there is literally nothing left and that can take an hour or more. It is not a daily event, but it is too often to make planning things an exact science.

I do try to live a normal life, but I realise that really I have cut back a lot of things

BUT like Gypsy, I will ride my bike inthe countryside, willing to use the hedgerow when recessary rather than stay in close proximity to a loo at all times ...

Forum user

Hi Sally,

I had a similar diagnosis and treatment to yourself and still suffer much of what you describe re bowel movement

I do have some temporary measures that work for me, for example if I take a Codeine Phosphate tablet it will generally stop most bowel movement the next day. This can be useful but no guaranteed outcome, and the effect only seems to last for 24hrs even if I take further doses

Mebeverine. I can take this for 3/4 days. It stops all spasms and makes bowel movements much more controllable, but after the 3/4 days I go back to clusters etc, so again limited effect

Loperamide. A little hit and miss for me, not always totally effective but I do use it a lot

Morphine. I take occasionally take this for a specific pain reason but the knock on effect is to relax my bowel and stop BMs for a few hours

Diet. I saw a nutritionalist and have a very 'gentle' diet that I can switch to that really helps BMs for a week or so. I like food so don't use it that often as it is really bland and boring, and also it's not very anti-cancer in it's properties. But through a food diary and gradual introduction of foods I know which will make my bowel react badly and can avoid them when I have to

I too find that going out can be a tense time. If I know I have to go out of a morning I get up at least 3 hours before I leave the house and always have that feeling 'should I go to the loo one more time'!

So I have a few options with prescribed drugs and diet that are useful but no long term fix.

Chools

Forum user

Thanks everyone for your replies. It's really good to know I'm not the only one struggling with this 'new life' that we seem to have acquired. Although I've had to give up my job (you can't be in charge of a class of small children and have to disappear for an hour to the loo!) and I've given up singing in a choir as I used to (you can't suddenly run off stage in the middle of a concert!) I am still trying hard to make myself go out and do some things. I'm about to go on holiday with my long-suffering husband and we have a 3hour flight . Any ideas on best way to cope with this as I'm quite dreading the possibility of having a bad day and there being a constant queue for the loo.
Also, I've only taken loperamide as and when I've needed them but the nurse suggested taking them regularly instead -does anyone else do this and how many and when do you take them? I go anywhere between 6 and 0 times a day -all very unpredictable with occasional urgency and loose stools thrown in for no apparent reason!!

wikey

hi sally

i take loperamide most days, one a day
sometimes 2
if i am planning a full day out i eat less the day before and take more loperamide. i might take 3 a day one with each meal. i also have some codeine phosphate pain killer left over from operations and one of these seems to quieten down the bowel as well.

you need to experiment but i would suggest taking one lopper a day or two and see how that works. a couple of days will let you know....

i sing in a choir, you should keep it up, take more loppers the day or so before a performance. when we practice, folks have got used to me disappearing...i am 65 so retired now. i find mornings the time when i have more BMs but can get a long stretch without the loo most afternoons. perhaps if you experiment and get more under control you might be able to work part time, afternoons for example...


cheers
mikey

best wishes
mikey

suze

I have had to give up teaching, but I have taken flights,

I use loperamide every day. I know I need it every day!

Forum user

I used to take 6 Loperamide per day but find it more effective to limit it, usually 2 after breakfast, sometimes moe if I'm going out

With regard your plane journey. Experiment before you go, but I'm with Wikey on eating less the day before. If it was me I would also take a Codeine as I know that helps me

Chools

Forum user

Thanks so much for all your advice. I'm going to start with one loperamide in the morning and another early evening and see how I go. I'll let you know how I get on! Perhaps I could then double up on the day of the flight...

Forum user

Experiment beforehand rather than on the day!


Chools

suze

Yes I take a bit more loperamide on a flight day .. but for me that tends to lead to explosive pooh-action at some point the next day, I figure there is not room for what has been held in so once the loperamide moves on the backlog whooshes out .. I know it is TMI - but that it the reality of it!

That is why I still have lots of loo-action, lopermide slows it for me, but too much leads to more trouble quite soon after ...

OFJ

So pleased that we have this wealth of information on our forum, I have the same poo problems and loperamide/codeine although it will hold things back for 6 hours or so, creates more problems like constipation pain and then having to go to the loo at 1, 2 and 3 am.
Just spoke to my Macmillan nurse and she said that it sounds like I have anterior resection syndrome which combined with IBS and divertulitis is giving me a bit of grief.
Good to know that it is a known problem and not just me whining :x::x: