Hi
I had chemotherapy followed by radiotherapy in 2021
This was for aggressive locally advanced prostate cancer Gleason 9 T3b N1 M0
This had spread to the lymph nodes in my pelvis.
I had a colonoscopy in May which found the two polyps and eight biopsies were all ok.
I asked to see the colorectal consultant again and he said from his point of view everything was good.
I saw him because I have left side and abdomen pain almost daily and am using disposable pants, the reason being I just don’t know what the day will be like.
I have a mix of sudden accidents / Diarrhea which a embarrassing mixed with days of impacted stool.
The colorectal Consultant said when I left that all he can think of in his words was “to bag me”
I am at my wits end so fed up and have had fantastic support from Maggie’s.
They ordered me a book from MacMillan and sent me the link.
after reading this I think that there is a chance that it could be pelvic radiation disease.
My specialist nurse says I need to seek advice from the colorectal team or my GP.
Any advice or help would b great.Its as if I see how I’m doing daily and juggle Imodium and sepositries daily.
Please feel free to read my profile.
I don’t eat like I did therefore loosing weight.
I hope that all the above makes sense to everyone
Spud
”You never know how strong you are,
until being Strong is your only choice”
Bob Marley
Hi Spud
Am really sorry to see you are having these bowel effects following your cancer treatment. I had pelvic radiotherapy last year and also have some late effects from it.
It is good that you have been checked out and am pleased you have had support from Maggies.
Have you asked or been offered to attend a Late Effects clinic? They can help give support for the Late effects of the cancer treatment. They may not be able to cure it but they will be able to offer support with managing it. I will pop a couple of links below with some info that you may want to have a look at.
Managing the bowel late effects of pelvic radiotherapy | Macmillan Cancer Support
Pelvic Radiation Disease Association (prda.org.uk)
With my own ongoing effects I am managing to get some control with alterations to my diet. I have been keeping a diary of each time I use the toilet (using Bristol Stool Chart) and keeping a note of urgency etc. I also note what I have eaten before any episodes of diarrhoea. I do not seem to have any constipation- unless I get it rebound from taking the Imodium. Another thing to ask to be checked for is any food intolerances. These can be caused by damage to the bowel during the radiotherapy and if any of it reached small bowel then intolerances such as Lactose intolerance can occur. There are also several other types that have a connection. Some of these can be treated.
My main issue seems to be Lactose and anything that is high fibre or has additives. If I cook from scratch, avoid lactose, limit dairy and have less high fibre foods- I can now go days without any symptoms. It's about what is specifically triggering your symptoms- if it is to do with the radiotherapy. I have not been referred to a dietician as have pretty much worked out what is causing the main problems along with my oncology nurse team. But maybe you could ask if referral to a dietician could work and whether specific diets may help- like Low Fod Map for instance. During radiotherapy my consultant said that I had suffered an extreme reaction to the treatment. It has taken almost a year but if I stick to what I know I can eat, eat regularly (no skipping meals) keep a routine for using the toilet where I can- I am ok for around 90% of the time.
I also had several attempts with different medication that was prescribed and it may also be worth asking about the Imodium and also asking about whether any of the other medications you may be on could be affecting your symptoms. It can sometimes also be about which time of day to take the imodium. I was told to take it 30 mins before eating and that made a difference. At one point to give you an idea I had to take 2 imodium 4x a day- 30 mins before food. I took codeine phosphate 4 x a day, ondansetron 2x a day (anti nausea drug that can be used for diarrhoea in some circumstances. I was also taking buscopan 4 x a day. Through dietary changes I now only take imodium occasionally/or if I am going out. I also take lactase enzymes as they help with symptoms after eating dairy. There are other enzymes that they can talk to you about depending on what your particularly cause is. The other thing that they can try is to use a stool bulking medicine - like fybogel- because although it is mainly thought of for constipation- it can actually help people with diarrhoea get some control.
I hope this helps a bit. It is really miserable have constant diarrhoea and fearing any accidents but there are things that they can try, if it is pelvic radiatian disease. On the second link I sent there is a page that you can fill out and take to your doctor, detailing the symptoms that can help them make a referral or diagnosis.
If there is anything else you need please do ask.
Good Luck
Jane
Hi Spud
Glad it helped. I hope that they can move your appointment forward.
I am off to a check up tomorrow , 1 year post treatment and I would say that my stomach issues are now pretty much under control by the diet. If it is pelvic radiation disease for you then hopefully with the right support things could improve greatly for you.
I still plan ahead, take spare underwear, find out where the toilets are, take my Can't wait Macmillan card but 90% of the time- I am ok. If I am going anywhere for longer I take imodium ahead of going. 6 months ago it was all a very different story. I have not yet myself been referred to the Late Effects clinic because they say I am managing it well, the clinic would not be doing anything different and I can't face more prodding and poking and the anxiety of more testing. The Pelvic radiation disease organisation has been very informative.
Good Luck
Jane
