IBS following radiotherapy for anal cancer

Hello Jester

That was great to be able to see your doctor so quickly. I have found in my circumstances there is a link.

I had external beam radiotherapy for womb cancer last year. It has definitely caused IBS type symptoms which started on day 2/3 of treatment. My treatment finished September 2022 and I still have daily symptoms.

I am currently keeping a food diary and also list each time I have my bowels open and what they are on the Bristol Stool chart. I am at the stage where my symptoms have improved by monitoring what I eat and avoiding certain foods. I have become lactose intolerant but can mange some dairy. Anything with too much fibre is out. I can have some wheat but not too much. White bread is ok, wholemeal is not. I can't have citrus fruit. I avoid as much as possible anything processed. I am doing this under medical supervision and discuss it with my team at my 12 weekly check ups. 

There is a definite link between my symptoms and the radiotherapy. I did not have anything like it before even when going through chemo. During radiotherapy I was prescribed medication but due to following the limited diet I am now only using the medication occasionally. I knew that there was a chance of these Late effects from my radiotherapy as the consultant explained potential side effects in detail to me.  The hope is that as I continue to monitor and reintroduce foods I will have a traffic light system- green foods- safe, orange foods-small amounts red foods- bring on symptoms. 

I have heard about the FODMAP diet and a lot of what I have been trying crosses over into it. It's very much trial and error. I am a lot better than I was due to watching my diet. 

If your symptoms do continue it may be worth asking about a Late effects clinic. They can give you support if it turns out that your tummy issues are connected to your radiotherapy.

I hope this helps

Jane

I sent a reply and it has disappeared - will check!

Hello jester I am two years post treatment and when I finished the chemo radiotherapy I was having to go to the toilet up to six seven times a day which I presumed was just temporary as many on here had pretty much the same problem. It did continue and I kind of knew that certain foods seem to trigger things and make it worse. I was put on the FODMAP diet for twelve weeks which meant I had to cut out quite a lot of my normal foods like broccoli cabbage wholewheat breads and generally food that is healthy. They gave need loads of information on alternatives like green beans, wheat free breads which I just didn’t like and you end up being conscious of everything that you put in your mouth. I don’t eat chocolate now as a rule for or citrus fruits like satsumas and can’t tolerate peaches. I did find it really hard at the beginning and worried about going the other direction of being constipated. I ate porridge in the morning and added anything allowable thrown in. I baked an oat bread and had that with a cheese allowable for lunch and the evening meal was sweet potatoes fish/chicken and green beans before six and then nothing until the next morning. I started to just go twice in the morning and that was it, great! Boring but it cured the every night stomache. If we visited the family for dinner and I strayed I found my stomach immediately start to bloat and have wind. It just wasn’t worth it so just stuck to what I should eat. After the twelve weeks I started to add foods in moderation but I couldn’t be doing all the faff with the charts and knew the culprits and chocolate is a big one and oranges. I never eat after six in the evening to give the stomach a chance to digest and heal. I do now eat a few naughty things like yesterday I had a couple of chocolate chip cookies but I always moderate and think that’s my life at the moment. I also drink kefir with my supplements. We are all different as to how we react to foods. I have not touched alcohol since diagnosis and to be honest I just don’t want to any more. Hope you find your balance soon

Hi Jester ,

In my time here I’ve noticed many members have had IBS type symptoms following treatment me included. I didn’t have to go as far as FODMAP but was prepared to if I didn’t have much success keeping a food diary & recording subsequent reactions to certain foods. As time has gone on I’ve found some of the foods I couldn’t tolerate I’ve been able to reintroduce, some I’m ok with others I can only have on occasion. Coffee is one of the worse offenders for me, I really miss a good cup of freshly brewed coffee but it really isn’t worth the bloating & discomfort afterwards. I went lactose free to begin with but I’m back to eating/drinking regular dairy now with no problems. A good quality probiotic may help also, I’ve mentioned before I use raw goats milk kefir from a company called the Chuckling Goat, you can order online, it’s not the cheapest but it’s really good stuff.

I really hope you get some relief soon, IBS can be so uncomfortable (& embarrassing at times!!)

Nicola 

Hello Bea

I suffer from wind - excessive at times, and only once I was able to narrow it down to a breakfast cereal I ate.  If I were to analyse my poos, it would be a long windy road as I eat most things BUT because of my fear of constipation, I take stool softeners daily and prune juice.  So I might start off fairly normally but end up with diarrhoea but at least afterwards I can go out knowing I am well and truly cleaned out.  It mightn't be ideal for everyone but it works for me, in fact anything that avoids constipation is ok with me.

Both my daughters have IBS and it really isn't easy - our GP wrote a letter when my youngest went to university as she couldn't face other people hearing her use the loo and she was allocated an ensuite room.

Hopefully you won't have to stay off the bubbles forever, I think adhering to the Fodmap diet has been a measure that even if only used for a relatively short time has helped people with their symptoms.

Irene xx

Hi Nicola, thanks for your interesting and helpful reply. It's reassuring as well, knowing that IBS-type symptoms are quite common following abdominal radiotherapy. I shall try and stick to the FODMAP diet if I can because I don't like being so bloated, but I do miss my whisky & water! I used it a lot as a painkiller and it really helped. I went to Waitrose today & stocked up on various milk alternatives, only to find they nearly all have chickory root in, which is a real no-no on FODMAP, so will return them tomorrow. Happy days eh? Keeps us on our toes! Bee Xx

Hello Jane, thank you for your reply, sorry I haven't replied to you sooner. I'm glad by watching your diet you have improved. I'm going to use the FODMAP diet and went to Waitrose yesterday and bought all sorts of things, only to find they have chickory in them which is an absolute no-no on this diet, so will take them back today. 

As I told the other ladies on this forum a while ago, I have had no help or support from the hospital and definitely don't have a "team" to advise me. I was given no idea of what would happen following radiotherapy, except to be told that the pain would peak after two weeks then I would be getting better - joke - six months on and I'm still in pain and tg I have a brilliant GP who's put me on Gabapentin for the pain. Now to be told I have IBS on top of all this is pretty awful, but I guess that's life and nothing is insurmountable. As you say, certain foods, eg wheat, lactose, apples & pears, but I can manage without those, but I do miss my whisky & water which has helped quell the pain a lot. I get a feeling I would be laughed at if I asked about a Late Effects Clinic at my hospital, but there we are. Thank you again  for replying and starting a really interesting discussion with all of us. Bee x

Hi Bee,

I am sorry that you have not had more support from your hospital. Mine have been good and I have 12 weekly checks still so although they focus on checking for recurrence, they give an opportunity to discuss side effects. The clinic that does my checks is able to directly refer to the Late effects clinics which is run by one of the radiotherapy nurse specialists. I have not been referred as pretty much managing it myself with the clinics support. My radiotherapy also said that I can email them directly at any point following the end of treatment even if its months later. I guess I am lucky to have this experience. 

I also got told that for most people symptoms peak around 2 weeks after treatment finishes but they also said that some people are unlucky and can have ongoing chronic symptoms and there isn't a way of predicting who these people will be. 

I have a stiffness in my hips that never went away and get some pain in my lower back. I was prescribed amitriptyline for neuropathy (caused by the chemo) but I stopped it because the effects on my tummy were too severe. 

I do think that I can control a lot of it with diet though. It can be a bit boring and frustrating as I used to be able to eat and drink what I wanted without thinking about it. I miss a lot of the fruit and veg I used to eat but have found that there is still enough that I can have to have a balanced diet. I find sometimes that I can have fruit like apples and pears- as long as I don't have the peel. I miss oranges. It's been very much trial and error and been about excluding certain foods and reintroducing foods one at a time. 

Now that I have a much better tummy I do notice pretty much within the hour, if I do eat something that disagrees with me. 

I found this useful and it maybe worth having a look when you have time. 

Pelvic Radiation Disease Association (prda.org.uk)

Jane

Thank you very much Jane.

1. Hello again Jane, thank you so much for the link to the PRDA - I've looked at it and it's wonderful that somebody actually realises that radiation is so bad for the pelvis. I know there's a group in the USA saying that radiotherapy shouldn't be used on the pelvis because of all the bad side effects, not sure if this is being admitted in this country yet. Thank you again.  Bx