I wonder if the stress in preparing for a total prophylactic gastrectomy makes us more susceptible to getting sick. My brother’s surgery has now been delayed because he too came down with some bug. The doctors don’t want you going into this surgery compromised in anyway. So my brother will get rescheduled and go through all the “impending surgery” stress another time. I wished he wouldn’t have to, but I want him to go into the surgery full strength too!
For me, this Saturday marks 6 months post op. I’ve noticed significant improvements in the last month with my ability to almost chug water and most of my food staying down. I can identify my “too much sugar” crashes easily. Today I ate a regular Greek yogurt and poured on the nature valley crunchy granola. Apparently I devoured it too fast and the protein to offset the sugars was not enough. I can work through it; closing my eyes for a minute or so seems to work.
I tried some beef on a burrito the other day. It was horrible. The beef was over cooked and was impossible to chew. So I ended up flipping out the beef and eating the other ingredients. Next time, I’ll opt for chicken. I have been able to eat meatloaf, though I have to go slow and really chew it down. I usually chew so much that I can find the ground up pieces of fat and discreetly put them in the trash or on my plate to the side. But I was hoping the iron of the meat would help me out, along with the protein. I’m holding strong to my theory of protein, protein, protein. This is hard as a bit of a carb-a-holic.
On the running front, I did 6 miles before work yesterday. It went really well. I’m so tired by the end of the night that it’s insane, but most same people’s alarm clocks don’t go off before 5AM. I know I need a big post of food strategies and my surgery prep recommendations, but I’m being lazy. Will try to do that another night.
Have a good night.
Hello, my name is Amanda and i live in Toronto Canada. I also tested positive for the CDH1 gene and had a total gastrectomy on july 31st 2013.It has been extremely difficult to keep food down. i have had my esophagus dilated 3 times. Did you suffer with food getting stuck and vomiting?.I feel so much better than i did afew months ago but i miss eating . i have not eaten any bread since my surgery as it gets stuck . Are you ok with bread?
Hi Amanda,
I do vomit when I haven’t chewed up my food well enough. What I experience feels less like a full vomit and more like spitting up. I’ve found that processed foods (like cheez its, pirate booty, chips) all go down really easily. The more healthy and complex the food, the more time I have to spend chewing and the more problems I have with it coming back up.
Breads can be tough. I have to really focus in eating slow and thoroughly. Plus when you’re trying to get protein and calories, breads aren’t on the top of the list. I struggle with a sandwich. I found croissants for bread are much easier.
I also struggle with foods with skins. I can just recently eat grapes without spitting out the skin before swallowing. Tomatoes still don’t go well. If I have a sandwich, I strip the skin off
Throwing up does get old. I’ve found in the last few weeks, I don’t have to throw up foods as often. I actually find when I try to rush my eating or when I get really excited about a dish I’m going to eat, that’s when I forget I have no stomach and those first bites come back up. But most of the time, I spit up the bite that was too big and then am able to continue eating. I keep a “spit cup” at work for when meals want to come back up. I was keeping one in the car also, but I no longer need that one.
My old posts, I’ve ranked foods by chew factor and which ones seem to give me more trouble. I generally have to chew everything to mush.
I hope that helps! Just remember, you’re not alone.
Thankyou so much for the advice Marne, it is good to know we are not the only ones going through this.I also find processed food easier to digest , i have found onion rings go down very easy but i dont indulge very often and only have 2 or 3. I am finding the last week or so tough because i have really lost my appetite although i did manage to eat 3 meatballs and keep them down at a xmas party on Saturday night and i had some rum and coke which really settled my stomach. I have lost 50lbs so far in 4 months so i am making a real effort to consume as much food as i possibly can so i dont lose any more weight. Have you tried salad yet? i ate afew mouthfuls of salad on the weekend and it went straight thru me so i will be avoiding salad for the time being which is difficult because it was my favourite thing to eat before my surgery.
i hope your brother is keeping well and doesnt have to wait too much longer for his surgery
Amanda
Hey Amanda,
I was able to try some Olive Garden salad a while ago. It was doused in salad dressing, so it went down pretty well. I just have never been a huge salad fan. I loved Greek salads and Waldorf, but I’m so focused on not losing weight, I generally stay away for right now. I might have a few nibbles of my husband’s salad, but that’s about it. I also go through phases with food, so I figure I’m not really craving any salad just yet and that’s ok.
I’ve been lucky to have some really great meals the last several weeks, but I posted a few months ago about not being able to eat solid food for a week. I got some sort of head cold and as a result couldn’t keep down anything other than yogurt, protein shakes and peanut butter M&Ms. My strategy for now is to eat slow and chew a ton for regular meals. Since my portion size isn’t big enough, I supplement with regular snacking on protein shakes, almonds, etc. I’ve been able to stabilize my weight a few weeks before my head cold….that cost me 5 lbs. My total weight loss to date has been about 17-19 lbs.
Hope that helps! Just keep at it, everyday, every meal. 🙂 I just keep trying.
Marne