Hi. If you can’t take complain I would suggest contacting your dietician at the hospital. There are plenty of other products she can suggest. Whenever I have done that the dietician has contacted my GP suggesting which product to prescribe. Fortunately I have a good GP who has always taken her advice and prescribed the recommended product.
Definitely talk to your dieticians. I was given loads of different low volume high calorie foods and drinks to try including soups, juices, milkshakes etc. I struggled with a lot of them to be honest but my dietician kept coming up with alternatives. Hopefully you will be able to tolerate something given to you.
In all honesty I couldn’t take to hardly any of them. The juices burned my throat, for instance but that isn’t a common thing I am told. Instead experimented with “normal” food. Although I struggled with some dairy like milk and yoghurts, I found I could tolerate cheese, ice cream and custard and added things like mayo and cheese to my meals and cream to drinks and desserts. Nuts were and still are 15 months post op, my go to snack.
Hi, would you say you are back to your normal weight now? Do you struggle to keep the weight? I am 5 months post - op, but only 1 month post chemo. The chemo really took away my sense of taste and appetite but they are slowly returning.
My “starting weight” before diagnosis was around 8 stone. Pre op chemo I managed to not lose too much weight. Just before surgery I had managed to add about 6lbs to my weight on the advice of my consultants knowing a dramatic weight loss was expected. Following surgery I lost around 2 stone. Post op chemo saw me drop another 1/2 stone so I was hovering around the 6st mark. Part of my problem was the rapid progression of food through my digestive system, every time I ate within 1 hour I was emptying my bowels. My oncologist was thinking that I might need a feeding tube...something I definitely didn’t want! Creon capsules have helped and I managed to put on around 1/2 stone within a few weeks. Since then my weight has been stable at around 6st 6 to 6st 7. My dietician and oncologist believe I probably won’t get any heavier. I have been this weight for around 7/8 months now. However, I am back in work full time, go to the gym and have a good social life. I am deficient in a lot of vitamins and minerals as I don’t retain the food long enough for my body to absorb them but I take multi vitamins every day and try to ensure I eat the proteins off my plate first. That way, if I leave anything it is the least nutritional element.
It took roughly 6 months for my taste buds to get back to near normal once treatment had finished. Even now there are some foods I no longer enjoy. To help me not lose any more weight, I added cheese and lashings of butter to a lot of my food along with mayo. These added calories help me maintain my weight. I also snack on nuts a lot as I can eat quite a few without feeling over full.
It is a struggle to just maintain my weight but I am managing quite well now. I try not to weigh myself too often as it is easy to become obsessed and instead rely on how well I feel and how much stamina I have (or not as the case may be) to gauge whether I need to try and up the calorie intake.
I hope your taste buds and appetite improve soon but if not already taking them, I would suggest speaking to your dietician about Creon. They really do help slow down the passage of food and help fat absorption particularly. Without these, I would probably need a feeding tube as I was losing weight each hospital visit until I went on those.
Hi Karen, thanks for your detailed reply. I am on creon too but I think the intensive FLOT treatment over the last few weeks caused a lot of gastric upset and I blamed it on creon. I am now persevering with them. I see my cancer nurse tomorrow for my ongoing care plan. I’m still getting used to this site so I think I will try and add you as a friend if that is ok? It’s good to have someone to talk to and I’ve had good advice from another member here too. X
