Traveling post RT

Hi Malnik

I didn't really have the problems you are experiencing, with the exception of wet wind. However the hospital did say that if I did get bowel issues you describe then Immodium is OK.

Having said that, I feel that 1 year post RT is long enough, so would suggest you have a chat with your hospital.

Regards

Stuart

Hello Malnik

I hope you do not mind me replying as I had a different type of cancer to you but I did have pelvic radiotherapy and mine finished in Oct 2022.

I still have some similar problems to you. My bladder is manageable and it really is just that I go more often and it can be a bit more irritated at times so occasional urgency. 

With my bowels I still get urgency at times and go more frequently than I did before. There is a big improvement to what there was but I still have some anxiety, like you around being too far from toilet facilities.

What has helped me is...........

1) Looking at diet, I now have some food intolerances that make things worse. In particular lactose and to some extent other dairy. Anything spicy or with too much fibre is not great. Along with my hospital I have kept a food/bowel diary to pin point what causes what. I has really helped and now I am at the stage of beginning to reintroduce food to see what is ok. I have a traffic light system of green foods- ok, orange foods- small amounts ok and red foods- cause symptoms. I take lactase enzymes to help when it is hard to avoid dairy. If I do get a few bad days then I tend to go back to the diet I had during radiotherapy which was very much a blander one- toast, crumpets, rice etc

2) Regular eating- I find that eating meals at regular times does help. My nurses explained that if you put food in regularly then bowel movements tend to become regular and more predictable. If I miss a meal or eat a lot later than normal, I can get an upset tummy again.

3) I am ok with a small amount of caffeine - 2/3 cups of tea a day -spread out over the day is ok but 2/3 cups in the space of a couple of hours can bring on cramps. 

4) With alcohol I would certainly limit it now- I did lose the taste for it during chemo- but if I do drink I would have clear drinks-eg gin and tonic rather than gassy drinks such as beer. Drinking plenty of water does help.

5) Imodium can really help if you have a flare up of symptoms or occasionally as a preventative measure. My doctors said it is ok to take a couple before going out or where there is limited access to toilets. Also being prepared by taking a change of underwear can help feel more in control. I have never had to use it but just knowing I was prepared- meant that any anxiety was lessened and anxiety in it self can make you go more. If Imodium does not work then there are medications that can be prescribed. Also I was told that with imodium to take it 30 m before eating to maximise the effects. It did work for me but something to ask your doctors about.

6) I also found Pelvic Radiation Disease Association helpful. They have some good advice on there website. I will pop a link for you.

Pelvic Radiation Disease Association (prda.org.uk)

Finally I am not sure whether you are having regular checks but you can ask to be referred to a Late Effects clinic at your hospital. They can offer you more detailed support. 

I hope this helps. It does get better but I found the biggest changes through dietary changes. Your hospital can support you through this.

Good Luck

Jane

Hello Malnik, I had similar issues to you, i have PCa with secondary bowel and anal and like jane2511 would put diet and an eating routine at the heart of treatment, i settled on fresh fruit,2 bananas daily reduces gas, veg, fish and chicken as the basis of what i eat and after eliminating the irritants, processed foods were really bad for me,was ok after 10 weeks, My bowels are not perfect but as i only have a problem once every 7 weeks i am happy, and go 1 or 2 times a day. i also use baby wipes too, which help and carry an emergency bag with me at all times. Immodium can be great but not for any length of time. As Stuart says see a doctor, 1 year is long enough. hope you have a great new year and many holidays, take care, Eddie

Thanks for this Jane, its like a light being switched on. I just thought I had to live with it. Lots of things you mention I will now adjust and monitor, as I'm home most of the time I cook but I've not really worried about timing of meals and it can fluctuate, so that's one. Ingredients, something I'll keep an eye on. Yesterday I cooked the best tasting cottage pie ever! (You'll have to take my word for it!). Lots of herbs and wine in the gravy, potatoes and cheese on top. All night needing to pass wind woke me and made me uncomfortable. So clearly ill need to watch what I put in now. I've downloaded the food diary on the PRDA site.

What I find disappointing is that no one within the treatment process has really discussed this with me. I've always told them but met with blank stares and I feel its like they say to me, I'm lucky to be where I am, suck it up and be grateful.

Thanks again, I'm feeling energised, its not just me.

Thanks Stuart, I did tell my people in my 6 month conversation, December. Not much interest, hence Im here! I'll start looking at taking Imodium with me, Im also following some other advice here so keeping a diary of food and movement!! 

So thanks, your input is much appreciated.

Thanks for this Eddie, unfortunately mine isn't anything like 7 week issues, its more like a couple of times a week. I'll get a couple of good days followed by a couple of days where it attempts to resume to normal, whatever that is now! I think you and Jane are right in the food intake. Since I saw this I've kept a subliminal note and there does seem to be a correlation. So as of tomorrow, (everyone back to work or school here!), its all being noted and hopefully I can see a pattern.

More importantly for my trip, I'll seek Imodium!!

Thanks again

Hi malnik

I am really pleased it helped. You most definitely not alone and it does and can get better. It was only by tracking food, symptoms and toilet visits (I was told to use the Bristol Stool Chart) that over the last few months I am managing symptoms and everything is starting to feel a bit more in control. While some people can have the radiotherapy and are lucky enough to be recover quickly through PRDA I have found that many people do have lingering Late Effects. Sharing these and what works to help manage them can only be of benefit. 

A few months ago I was having symptoms regularly that would stop me doing things but now even through Christmas I only had tummy troubles once. That was after drinking a glass of normal milk to see if I could tolerate it again. I couldn't ! 

Jane

Hi malnik, sorry i should have mentioned that my bowel and bladder motions were really poor before sorting a regime that worked for me, take care, Eddie

Have you already tried pelvic floor exercises

/ I'm 18 months post RT and have often noticed that urgency and leaking start to happen again. A few days of Pelvic floor exercises every hour or so certainly help and give me a lot more control and time to react. Just might help you.

I had some of these propblems - was given treatment daily enemas for about 3 months - can't remember what they were called but it was a white creamy substance that must have helped with the inflammation which was not helped by having a colonoscopy within the first months after RT for another reason.  The treatment helped.  Then told to take one immodium a day and if going too often a sachet of fybogel as it bulks up the bowel movements so that you shouldn't go too often.  It worked for me - probably did that for about 6 months until back to normal.