I saw my oncologist at the beginning of the week who confirmed I do have pelvic radiation disease, I am currently having a flare up with the proctitis but am yet to be told what I can and can’t eat.
does anyone have any ideas as clearly I have just been left to deal with this myself?
also, on a different subject I’ve been told I could claim pip, is that somethin that others do?
Food is a minefield. Aviod spicy food. I did a FOD map diet some time ago which revealed a wheat intolerance but I can eat ciabatta bread. Tomato skins are not easily digestable. Sadly it is just trial and error. I take imodium every day and if I'm going out I'll take more. I hope you can get to see a dietitian to help with diet. I also take a multivitamin and a B12 tablet every day. Make a diary of what your eating so you can see what might not be helpful to the bowels. Hang in there, it does get easier. Xx
Thanku for replying, I’ve seen that spicy food isn’t good which isn’t too bad as I’m not really a spicy fan. I’ll def do a food diary. I just feel so emotional all the time and embarrassed,
Thanku 🥰 xx
DO NOT FEEL EMBARRASSED! Be open and honest with friends and family. I've had the worst happen a few times, once on a sightseeing trip in a minibus 🫣 Seriously people were lovely but it really did smell! I wear a pad. Tena pants and modibod pants over the top and my 'chernoblys ' are contained until I can get to a loo. Hopefully you have an 'I can't wait card' which should get you into the nearest loo be it a shop or anywhere where you'd expect a loo. Even staff loos. A radar key so you can use disabled loos. Also the 'chernoblys' kit of a change of pants & clothes, wipes, creams perfume etc. So you can clean up if necessary. The more we talk about these side effects the more people are educated and will talk more freely about 'down below issues '. Get out there and little by little your confidence will grow. Xx
Are those somethin u have to purchase urself? I used to giggle with my children about tena pants and say I’ll never wear those, now I think I might have to. Xx
Currently I do buy them myself but I would ask your GP about getting you to an incontinence clinic and I believe they will provide pads and pants but needless to say they're not very attractive. I've bought some period pants from M&S to wear over the top. I hope you're getting pip as if you can't work because of your recovery etc. then you should get some financial help. Wishing you the best as you get through this. Xx
Having finally got my radiation after effects moved from urology, double prostate treatment, to gastro I have a team wo understand bowel urgency.
They recommended Gluten and lactose trials as my symptoms where almost identical to those experienced by irritable bowel patients.
Imodium daily and late release peppermint capsules plus a gluten free diet have worked wonders. Ratcheting up the Imodium until I found my dose and managing to “get it all done” first thing seem to have worked for me.
Treating “urgency” from the irritable bowel point of view is an approach my urology oncologist wasn’t prepared to even investigate.
Radiotherapy damage is ignored by so many radiotherapy professionals.
I have had proctitis for around 7 years now, didn't get it until about 14 years after radiotherapy. I am lucky, not too severe. I do get quite a bit of mucus though. I havent really found food changes things much for me, but I do eat kefir every morning, take one or 2 imodium each day. I also wear period pants, find M & S do the best ones. My thinking is trying to maintain good gut bacteria in the lower bowl (I had anal cancer) to reduce inflamation and keep symptoms stable.
Some people have an adverse reaction to kefir, best to start with just a tablespoon a day and build up. But probiotics may help, need to build them up slowly. Some kefir tasts like vomit! Aldi do a nice one so do waitrose.
I've found a very low fibre diet helps, no seeds, nuts, things with skin like peppers and tomatoes, no fruit with seeds, even in jam. The only veg is carrot, turnip etc. well cooked. I take Loperamide when I have to go.anywhere new because I don't know about access to a toilet and I stay neat a toilet for an hour after meals. I do my best diet wise but I still have the odd accident which really upsets me but I still lead a decent life. When my bowel is bad it leaves me very fatigued with a sore back and legs but I just rest when that happens. Luckily I have a good support system and an understanding employer.
Avoiding resistant starches really helped me. Re-heated pasta, potato, rice etc. can cause a bad reaction if you have digestive problems. I only eat them freshly cooked and it has made a big difference.
Radiation induced lumbar plexopathy 
Bowel and bladder problems after Radiotherapy
Still looking for answers
