New Member

[Msdoubtfire]

hi there.

I have just joined this group in the hope of finding some support.

I was treated for cervical adenocarcinoma seven years ago and this included radiotherapy and brachytherapy. I was treated by the late effects clinic at the oncology centre and later discharged as they had taken me as far as they could.

my symptoms have gradually got worse over the years and although I am fit and well the bowel symptoms are so painful and debilitating. I can’t get to work and don’t get out much.

I have been seen by gastroenterologists but they have ran out of treatment options. I can’t get on top of so many other late effects because my bowel is so bad .

I carry a radar key and a just can’t wait card.

anyone any advice on how to cope and maybe have more of an active life?

[Jimbo65]

No! Don't take no for an answer. There has to be something that can be done to improve your quality of life. Never put up with pain. Having said that I'm several years ahead of you and in the last year my bowels have definitely got worse. I had a breath test in February which was positive. I waited until June before NHS actually gave me a follow-up and prescribed antibiotics. Not clear how they thought this was going to be a miracle cure. Anyway, needless to say it didn't make much difference. Get to see a Dietitian. A fodmap diet definitely helped me and I now avoid certain foods that I know trigger my chernoblys (my term for explosive diarrhea). Exercise really helps. Look for a seated exercise class if you can't face standing exercise. Go back to GP and the late effects clinic and tell them that your quality of life is shit, literally! There has to be something else to try. Hang in there. Xx

[Msdoubtfire in reply to Jimbo65]

Thank you so much.

I feel as if I am in a viscious circle that I keep trying to get out of and can’t. Motivation is there but I keep hitting brick walls.

I eat a very low fat diet as they have diagnosed bile acid malabsorption but I will look into fodmap diet. If I could get a wee bit of weight off it might help my pain but I hardly eat at all. I will ask for another referral to a dietician. Thank you! x

[Gingerurgent]

Msdoubtfure,

Following a return of my prostate cancer six years after radical surgery, it returned in the prostate bed and local lymph’s, I had twenty beam targeted radio therapy treatments.

Subsequent to treatment, with follow up only to the side effects of the hormone therapy, I discovered this site and became aware on here of “Pelvic Radiation Damge”

Bowel functions became “urgent”, lovely term, and flushes were only addressed with acupuncture.

Started to treat myself with Loperimide, and experimenting with the dose I find one every morning helps greatly. I’ve subsequently got this on prescription. Still urgent but now reduced to three events daily and with diet control/ care I can manage.

About a month ago my left leg below the knee swelled up to an amazing size, no pain but it was diagnosed as lymphoedema. Now they tell me this is to be expected as the lymph nodes are badly affected by the radiation , “sleep on your back with your leg raised !” Menopausal hormone events have given me chronic insomnia so attempting to sleep in this position is a breeze! …….I’d kill for a breeze. ….lol

I understand our cancers are different but the pelvic damage results sound familiar.

I can’t recommend Loperamide enough and apparently you can get up to quite high doses with no apparent side effects, trial and error was the only way I found a dose that worked for me.

Good Luck.