Side Effects

Hi Plod

Am sorry that you are having some side effects from your radiotherapy. It does not sound unusual to me at all. I had my external beam radiotherapy in Aug/Sept 2022. During that time I met many people who were having the same treatment and they were pretty much all having diarrhoea and tummy issues.

I suggest the best thing is to talk to your radiotherapists. They really are the experts and if one medication is not helping then they have others. Radiotherapists can prescribe certain medication so if needed they can give you a prescription when you go in for your treatment next. I expect you are having a review each week with your consultant? It would be worth discussing with them as well. 

My consultant said that I had quite an extreme reaction but it was as you describe and in my case it got worse. Everything I ate went straight through me, I was having urgency and large amounts of watery diarrhoea. I seriously worried about the journey to and from the hospital. I also struggled at the end to be able to drink the water and wait for the half an hour before the treatment.

I am not medically trained but if I put down what I was prescribed maybe it is something that you can use to discuss with your team. I was told that it is also not just about the actual medication but how you take it. For example with loperamide/immodium you would normally take if you have diarrhoea but with radiotherapy caused diarrhoea it is taking eat before you eat to try to prevent it and to help ensure you are absorbing some nutrients.

I was on loperamide 2 tablets 4x a day- and I had to take these 30 minutes before meals. I was taking Buscopan to relieve the cramps. I was given ondansetron which is an anti nausea medication that I had through chemo and I had to take this 2 tablets 2 x daily and had to take 30 minutes before the treatment. Ondansetron has a constipating effect so this made a difference. I was also prescribed codeine phosphate 2 tablets x a day. I had a very bland diet- lots of toast, crumpets, no caffeine. Had to eat very regularly after the medication. Any missed meals didn't help. All of this meant I could get it under control and complete the treatment. 

I found my radiotherapists really supportive. They have lots of different medications that they can try with you and they also are able to give you advise on diet. I did get quite weak by the end of radiotherapy- partly I feel due to the accumulate side effects from the chemo I had previously and I did in the end have some problems with blood levels and needed a transfusion. 

I expect you are having treatment today? So have a good talk with them about your tummy effects and I am sure they will be able to help you get them a bit more under control. With the right medication/diet advice it took about 48 hours for me to be a lot more comfortable. 

Good Luck

Jane

Hi Jane 

thanks for the advice I have a session today and also have my review so will discuss alternative meds with her. It was reassuring to hear that it’s not that unusual my big worry is getting sufficient nutrients from anything i eat as it’s all really bland. Obviously going to the toilet so much is causing pain to my back passage but will ask for something for that today. 

mamy thanks for the advice 

Plod

Hi Plod- there were a lot of gentlemen that I met on my regular days at the hospital who were having pelvic radiotherapy for prostate cancer. Every single one I spoke with had diarrhoea side effects. Most were on loperamide. I was also worried about the nutrition side of it as was already not in a great state after the chemo and my bloods kept coming back with issues. Main one for me was low haemoglobin so they did a blood transfusion and my appetite did increase a bit after that. In the end they said just to eat whatever I could manage and a lot of the normal healthier foods were out but they said it wasn't a problem for the short period of time I was having radiotherapy. They said after the 5 weeks it would improve. And it did. 

I can understand you are getting pain from using the toilet so much. They can give you things to help with that so it's worth mentioning to them. 

It's all can be quite unpleasant but it is only normally for a short time. I remember being told by people who meant well that radiotherapy would be easy compared to chemo and you just lay still on a bed with a machine going round you!

Not helpful. I found it really hard at times and you are not alone in having such an upset stomach. 

Hope they can help sort something for you today. 

Jane

Thankyou Jane I’ve never had this happen before pbviously and was a bit worried about it but you have helped settle my anxiety a bit. I will speak to team this afternoon. I have tried the loperamide 30 mins before breakfast to see if it works thankyou. The hysterectomy was abreeze compare to this. 

cheers 

Plod

As Jane has suggested do discuss with your radiography team as they are used to helping with these kind of things. My appetite was very low during my treatment and I was advised to eat what I fancied and also to go on low fibre foods. I only had a few episodes of diarrhoea, one caused by food poisoning rather than a side effect. I was prescribed the generic Imodium and only used a couple of times, My stool was looser and more urgent though as I am on a Codeine -Paracetamol medication for my arthritis pain and opiates can cause constipation it likely helped me. 
I have found that my appetite returned very quickly after the end of the treatment and bowels returned to normal quite quickly. I am still on a low fibre diet at present as higher fibre food gives me quite painful wind so I am taking my time reintroducing. 

Thankyou Muse 

I have read some of your posts from when you were going through radiotherapy which have been useful. I will have a good discussion with radiotherapy team this afternoon. I considering doing a food diary to work out what might irritate my bowel. 

cheers 

Plod

yes- that is what I thought- the hysterectomy was definitely easier. The main thing is they can normally do something about it so do ask them for support

Hi Plod, are you following a pelvic radiotherapy eating plan (which is typically low fibre with some extra tweaks)? I had radio last year (April/May) and I think it helped. 

Hi Marmite 

I’m currently trying to work out what’s working in terms of food and what’s causing issues. I bought some peppermint and green tea yesterday which seemed to help with wind. I’m not feeling that hungry at the min but I can’t work out whether it’s because I know I will go straight to the loo afterwards or because I don’t feel hungry. I have the added difficulty of having to make sure I eat as I also have epilepsy and eating is imperative to manage it effectively. 

Had review yesterday and they don’t seem too concerned about the epilepsy thing but it’s mega important to me as I want to be able to drive and if I have a seizure I will have to give up for a year. 

thanks 

Plod

Just a suggestion but talk to your team about whether a Low Fodmap diet may have benefits. It's something that is used for IBS etc