Eating

Hi Kitty

I am sorry to read that you are having such difficulty with food, I want to bump your post  up, on the hope that it may encourage more answers.  

I am unable to make much comment on the difficulties that you are experiencing but I am aware that some of the other members here will fully appreciate them and may be able to share their thoughts and knowledge with you. 

I do hope someone is able to share their stories with you. 

Lowe'

Hi Kitty, I was telling an old friend yesterday that we do not appreciate just how much pleasure we get from eating food, until we can't do it. I had the Ivor Lewis surgery in October 2016 and learned quite quickly about food dumping syndrome. I was fortunate enough not to suffer from diahorrea badly, for me caused by cake because of the sugar content. I learned to avoid sugary foods and drinks and for over a year I had to avoid simple carbohydrates like potatoes. I also discovered that eating just a forkfull of something that agreed with me normally was enough to cause the food dumping. Eating out wasn't something that I did often but I avoided going out for a couple of years. I never feel hungry but I learned to eat by the clock. I did start to adapt to my new regime and did start to enjoy eating again, smaller portions but still satisfying and pleasurable. I hope you will get there too. Kind regards Frank

Hi kitty, I’m about 12 weeks post op and am struggling with eating. Like you my appetite is poor and I can’t eat very much. I’m also struggling with swallowing-food gets stuck and hurts terribly to then swallow it. I dread mealtimes. My taste has changed and have gone off a lot of things I used to like-a bit like after chemo. I am waiting results of a barium X-ray to see if I need a stretch, but the doc who did it said there seems to be a clear swallowing passage. Very stressful and difficult. 

Moggie what is your current diet? can you give an example of a day of eating. I haven't had the op, but my eating did get so bad that I could only stomach liquids at one point and I was struggling with that. My mrs was really inventive coming up with things i would enjoy and could eat. I have shared in my profile what I ate and did to improve my eating. Do you get protein drinks from the doctors, these were a life saver for me when I was really struggling. I found freezing them was a real treat and made it easy for me to swallow.

Hi Vinny, I’m still on a jej feed to supplement my diet as I can’t take in enough orally yet. I manage soaked oats for  breakfast, usually soup and crackers or oatcakes for lunch. Tea is softer things like omelettes, fish or pasta (I don’t eat meat) and yoghurt. I’ve gone off tea but have coffee and biscuits in between meals.  I snack on nuts too. I’ve got the Fresubin drinks too for when I can’t face much food. I just wonder if I’ll ever be able to eat enough without the feeding tube…

Fingers crossed it is something that improves with time. In a couple of months I will hopefully be having my op so will be facing the same challenges as you :)

Here are a couple of recipes my mrs come up with for me when I could only stomach liquids/just got back onto solids

Red lentil soup this was my go to whenever I was struggling to eat its really good for you and tasty (I didn't even know what lentils was before all this haha) 1 Cup of red lentils, add some spinach and carrots into boiled water with a stock cube to add flavor. boil for 30 mins and then blend it if you need to.

Rice pudding - Fill a pan with full fat milk, add a cinnamon stick, some cane sugar and some rice and boil. Again blended it to make as smooth as possible. (Delicious frozen too)

Breakfast pancakes (Similar to porridge, but different taste and texture) - Large cup of oats, 1 egg, 1/2 cup of milk, a banana, small amount of cinnamon and honey then blend. Fry in a pan with butter

If you can't face eating and protein drinks are your way forward I found adding a banana, some milk and peanut butter to a blender with the fresubin helped me up my calories. Can you have frozen foods after the op? Frozen cappuccino, toffee and forest fruits fresubin frozen are delicious. At one point it was the only thing I could eat that was solid and they were heaven. I really do hope the above help and stay strong you have been through a lot and I am sure things will improve :)

Aw I’m so pleased you’ll finally get the op. I think people progress differently. I was very fit before so recovered physically fairly quickly. It’s just getting used to eating that’s the problem, and keeping my weight up. I must try freezing the Fresubin as it sometimes is a bit sickly. Nothing really tastes as good as it did and that changes from time to time. Lentil soup is a favourite of mine, snd I must try these pancakes! I love nut butters so eat that on crackers for calories. I used to eat loads of seeded bread but that just sticks and makes me sick now :( Thank you for your support, wishing you all the best for your op when it comes.  

I was told I was incurable when I started my journey in October/November and that I would of chemo for as long as I can take it, In my scans a week ago we learnt that the chemo had decimated my tumors to the point that only my primaries are barely visible. I was told that I only need 1 more chemo session and then 3 months of surveillance with herceptin with a plan to operate if all goes well :).   I recommend a juicer too its a great way of getting calories into you and lots of nutrients to keep you healthy. I have two big juices a day which are really nice, there is a good recipe book called crazy sexy juice. Good luck on your journey too, I will be messaging you for tips in a couple of months when you are eating much better

That’s great news! Hoping all goes well, but you’re off to a good start. I find it hard to drink much which is annoying as I fancy juicing to get more fruit and veg in my diet, which isn’t so easy now. Hopefully that might improve too. :) 

Moggie, because they cut through the vagus nerve amongst others I don't think you ever get an appetite like we used to have. You have to learn to eat by the clock, small amounts often. When I first started on the feeding tube in hospital I had to get the feeding rate slowed down as it made me feel sick. It takes longer to get through the feed but was better for me, and I was taught how to adjust the flow rate up or down to suit me best. I had my gullet dilated  to 18 mm about 12 weeks after the surgery and it made a difference. I avoided hard foods like toast and crackers and had porridge oats and cereals with hot milk to soften them, anything that went down easy. You need to take foods that will make you gain weight, fortified milk helps. I still have coffee made with warm full fat milk rather than water. You also have to be careful with sugary foods and drinks as they can cause food dumping, I use Stevia sweetener for my sweet tooth. You can get off the feeding tube once you have gained weight and kept it on, then you can go back to healthy eating. It's still early days for you, 12 weeks is nothing in your recovery time. My surgeon told me that the trauma caused by the surgery was the equivalent of a major road crash injury, so it's going to take time to recover. Good luck and kind regards Frank.