Struggling still 3 1/2 years post treatment

Hi guys

Anyone suffering with bowel problems since RT. I'm at my bloody wits end with it now. Just applied for a just can't wait card. I wasn't like this b4 cancer. I know it's a small price to pay because I'm still here but I'm so fed up of planning an outing around toilets ..... rant over x

Hi there lady

rant away!!  I do hope you can get a card without any hassle. Has your GP worked with you to help see if this can be resolved. 31/2 years seem excessive. 

Its rather a catch 22 because I would say to try to control with diet but that would mean cutting out all diary and more but you need dairy for your bones and the vitamin d for asorbition of so many things. Have you tried getting a script for a strong lactose enzyme to help your body break down foods better and not cause the the cramps and bloating and diarrhea?   maybe try some over the counter type first to see if they relieve the issues a bit and then speak to your dr. Maybe you also need to take something to slow down the intestines along with an enzyme  To help your intestines do there thing  

After radiation to the pelvis the intestines are no longer able to produce enough enzymes for digesting foods. Some can control issues with diet but that same amount of diet control might be inhibiting you from getting essential vitamins and minerals. 

Just thought I'd share. 

Hi there, I started having bowel problems about 5 years after radio and chemo, at that time i went to my GP who just thought it was a stomach bug I had picked up in Africa, I kind of thought it made some sense.  No one ever mentioned to me I could have trouble several years after treatment.  Was only when I read an atricle in the Daily Mail that I looked into it further and found out about Pelvic Radiation Disease.  Hey ho, it's now got a name!  I worked out myself what was making me need the loo all the time, namely food containing wheat and lactose mainly, also eggs.  If I cut them out I'm a lot better.  I didn't go to the doctor, couldn't bear the thought of more flippin tests and being prodded and poked and more things stuck up me!  Also I read that some GP's don't even know about PRD.  Like you, when I go out i need to watch what I eat before I go out and like the know where the loos are!  Holidays are difficult, as I've just found out but just about managed.  I think everyone's symptons are slightly different and from what little I know what works for one may not for another.  Hope you get on ok. xx


hi there   yes I have Bowel problems too and bladder problems as well  Nightmare . Its usually too late to look for toilet so have to wear incontinance pants and carrry spares around with me all the time   (and then clean up in toilets of course  -disabled ones are best) Limits going out i can tell you!!

I havent got special card though I have got radar key 

next step is back to Gastro dietician as opposed to oncology one 

i left both my last appointments with bladder and Gastro consultants in tears 

But cheer up  I know it could be worse  I did have 3B and im still going after 2 years   but sometimes it really gets me down   Maybe it will help being able to chat about it on here !

Hi I hope you get on ok with the Gastro dietician.  As already said, it's a bit of a catch 22 situation but one that can be quite debiliating and humiliating.  It certainly limits what I can and cannot do and of course eat.  However, 10 years on and I'm still here.  Maybe I will get one of the key cards or maybe a blue badge for the car, it may help.