Happy 3rd Total Gastrectomy Anniversary to me!
It was 3 years ago that I had my stomach removed and my life was forever changed....but not as much as I feared it would be. Going into the surgery, I really had no idea what to expect. I had talked to one person that had had the surgery, had read several blogs, and done other research online. I hadn't yet found the CDH1 facebook group (which I would highly recommend to anyone with this gene mutation.) One thing that I did learn from what I had read was that everyone's experience was unique. What worked for one person didn't necessarily work for another one. No one could give me a list of foods that I could and couldn't eat. It would all be trial and error. This was one of the scariest parts. I didn't know if there were foods that I would never eat again.
I've been fortunate. I don't know if it's because I had a great surgeon or because I did something right in my recovery or if I was just lucky, but I am in a better place than I ever dreamed I would be. I didn't get here overnight, but I can now eat pretty much anything I want to. There are some things I choose not to eat a lot of because I don't want to fill up on things such as salad, bread, etc. I focus on protein. But I do eat the other things also. The main thing that I really have to watch is sweets, but I do get to eat candy and dessert...just in small quantities. That's one of the things I wasn't sure if I would ever eat again. But when you only get to eat a few bites of dessert or one piece of candy, you actually cherish it and enjoy it more. I'll post another blog about dessert and a couple of desserts I have found I can eat a whole piece of soon.
The other place I have made adjustments is in beverages. I've always loved unsweetened iced tea and drank a lot of it. Prior to gastrectomy, I would also drink Coke. I've never liked Diet Coke, so I would drink the real thing. I didn't try Coke for awhile after surgery because of the carbonation and the sugar. When I finally did, I found I could tolerate it (in small quantities), but I didn't really enjoy it anymore. So, I have pretty much stuck with the tea that I still love...and then I can enjoy other sweets more because I'm not wasting my sugar intake on a beverage. I've also made an adjustment to the alcoholic beverages I prefer. My preferred drink used to be a fuzzy navel with orange juice and peach schnapps. I have found that's now too sweet and have switched to wine more often. I also drink hard cider, that's something I've enjoyed before and after surgery. I don't drink much as without a stomach, the effects of alcohol are felt much sooner.
I've talked in this blog before about my weight loss. I lost 85 pounds, going from 243 before surgery to 157 about 18 months later. I stayed at that weight for about a year and then about 6 months ago, I started gaining weight. I'm up to around 164 now. As opposed to many people that have this surgery, being overweight, I saw the weight loss as a nice fringe benefit. I was thrilled with my 157 weight and felt great about my body. I'm still happy at 164, but really don't want to gain too much more. If I keep gaining, I'll have to figure out what to do to stop it. Losing weight is something I've never been able to do until the gastrectomy, so I'm not looking forward to that if it becomes a thing..but for now, I'm happy with where I am.
Many people find it hard to believe that you can live a good life without a stomach. I'm here to tell you that you can. I started this blog to hopefully help others faced with the same decisions I was. When diagnosed with CDH1, I found so little information out there. I found the blogs from other survivors to be so helpful. If I an help someone else, that's what it's all about.