Discussion Topic - Diet

The short answer is ‘Yes’ and ‘Yes’! There was a great deal of discussion about diet when I was having treatment nearly five years ago now! Doesn’t time fly when you’re having fun! 

I have had IBS (formally diagnosed) for 50 years, so had slightly dodgy bowels before treatment. 

My treatment consisted of the standard MitomycinC and 2 weeks of 5FU IV via a pump as an outpatient. I also had antibiotics to cover the insertion of a Hickman line followed by a covering Cephuroxime during treatment. Consequently my gut biome was shot which added to my issues. I have a fairly broad knowledge of dietary needs having done a lot of research for my husband. I took to Dr Google in a big way, but I do know where to look. I didn’t do this till a few months after treatment, prompted by others here. 

Chemo destroys squamous cells basically, which line our gut from mouth to bum! Hence the need for a very bland and non irritating way of eating for a good while. Others, who had just been treated before me, gave me the heads up on the avoidance of sugars and dairy products. Treatment affects the processing sites in the gut, along with the poor bacterial content.

Several of us at the same time found the research done by Monash University in Australia. They looked at the effects of fermentable sugars in the gut and the poor health effects. It’s called the FODMAP diet. Very easy to understand, and a few of us were, and still are following their suggestions. The diet is being widely accepted by gut doctors in the UK now. I’ve found this info invaluable

I took to having live Kefir from a proven company called Chuckling Goat. And it worked wonders. I do still have a three week course every few months. 

I still have bad effects from dairy if I over indulge, and I don’t eat bread in any form, or processed food, I eat most vegetables with impunity, but can’t manage peas or sweetcorn. I am largely veggie now, but do have chicken and fish.  Lentils and chickpeas etc are fine, as is a jolly good curry! I can’t eat kale or spring greens sadly! The effects of eating problem foods is horrendous bloating and vile lower gut pain. Closely followed by a blowout! Not worth the hassle! 

If I just stick to what I know I’m ok with, my gut is pretty normal. I actually contracted campylobacter last year, and apart from the gut problems for a day or two, I wasn’t unwell. So my immune system must be in good nick! 

All in all, I’m pretty normal, so all you who are newly finished, or going through it, take heart. I’m a NEDdy now nearly five years, and expect to be discharged in December. WHOOP WHOOP! 

Hope some of this may help. 

I’m also a yes & yes, I too have chuckling goat kefir, I take it every morning half an hour or so before breakfast. Our immunity stems from our gut so the better shape our gut is in the healthier we’ll be & a great quality kefir like this one plows back the good bacteria into your digestive system. I stay away from processed foods 90% of the time & have cut out most cows dairy, all refined sugar, bread, pasta, rice & most grains, I eat mainly whole foods & get tremendous bloating if I do eat processed stuff especially processed carbohydrates. In hindsight I’ve never done well on bread, pasta etc., but it wasn’t until I cut it out last year (on a knee-jerk health drive after diagnosis!) that I realised how awful it made me feel. I’ve moderated my alcohol intake (still enjoy a couple of G&T’s) because of the sugars & try & make a lot of my meals keto friendly which is basically plenty of healthy fats, low carb & moderate protein & at a time when I should have been feeling dreadful going through treatment last year I felt better than I had in a very long time! I also take some supplements that I’ve discussed with you before Sarah. 

I’ll be interested to see what everyone else has done. 

Is there a reason it's goats kefir particularly?

Hi

Goats milk is very low in allergens compared to cows milk, goats milk is also naturally lactose free & is far easier to digest. It’s great for anyone that has a sensitivity to dairy. 

Hope that helps.

Nicola 

All great advice so far.

I've had IBS for a few years now, and have Loperamide on prescription. It has seemed that my symptoms have been triggered by dairy products ... milk, butter, cheese.

I tried to limit my lactose intake by using "lactose-removed" milk in tea and coffee, and non-dairy spread on sandwiches. I can't cope with anything except butter on toast or crumpets and (try as I might) I can't give up cheese.

BUT I was using "Weetabix To Go" milkshakes (or another brand) as a breakfast. I swapped to a supermarket milkshake with lactose-free milk, but hated the artificial sweetener they contained, so I swapped again to that old faithful ... Nesquik. These swaps have help the IBS, but my AC is now causing irritation and bleeding!

The point which I wanted to bring up is that humans are the only animals  (as far as I know) who drink the milk of other animals as part of their ongoing and regular diet. Our metabolism hasn't yet evolved to properly digest the milk of other animals ... cows, goats or sheep

I’m finding that sugary food, particularly sour sweets cause AC pain and bleeding.  I start my treatment in 10 days, so this is an AC thing not a post treatment issue.  I guess it’s good really because fizzy wine gums aren’t exactly food, but it would be nice to eat rubbish from time to time without feeling dreadful.

From  my experience while undergoing treatment, just eat what makes you feel happy cos sometimes you might not even feel like eating!  Forget the nutrition element - your taste buds might change but they will let you know what you want and what you don't fancy eating!  Your body will be going through many different phases.  I found the best way to get through was to go with the taste that made me feel better!  One day savoury, the next sweet!  Developed a sweet tooth which I never had before!!!!  One doctor told me to change my late night chocolate snacks for vegetable crudities, and the other just to go with what made me feel good!   My diet didn't cause my diagnosis, so changing it wouldn't change my future as far as I was concerned!   My old lifestyle had served me for 67 years and has continued for the last 5 1/2!  My philosophy is just be happy to still be here and continue life as if the hiccup had never happened.  Continue as you were.  Plenty of time to change your lifestyle as you enter your new future!  Just live and fight for today.  Mxx

Many thanks for the goats milk tip Nicola.

6 months post chemo, I was struggling with ibs-like symptoms and randomly discovered I am now lactose intolerant, after a lifetime of eating pretty much anything!

I make kefir with coconut water but will try goats milk instead, for change of flavour.

I also enjoy cheese and discovered a very tasty almond milk cheese.

But I was still not 100% so oncologist suggested gfcf diet, and cutting out gluten has made a huge difference. Twice I tried regressing! Once with a lovely thin pizza at a great Italian restaurant, and once some lovely cheesy bread at a salad bar. Big mistakes! Both times took 3 days to settle down. Now I enjoy experimenting making my own gf breads.

Gfcf is not so hard and just needs different shopping and eating out habits. A voyage of discovery!

I hope trying gfcf may bring the same comfort to other sufferers.

Best wishes to all, steve