WHAT TO EXPECT: This is not an easy time.
You are recovering from major surgery and you may have some complications. Your body is trying to figure out how to do the whole digestion thing with only a make-shift stomach. And if you are going to have more chemo, it will probably begin about the time you start feeling a little better.
You’ll probably be seeing your surgeon every week or so. Your surgeon or your dietitian will give you advice on what to eat and when it is OK to add new types of food. At some point, you’ll see your oncologist to plan for any post-surgery chemo. You will probably also have staff from a home health agency come to your home to see how you are doing and help you with any problems you are having.
Though there is discomfort during this time, Gary experienced no actual pain. Your major tasks during this period will be to get showered, walk some every day, and deal with medical professionals.
WORDS OF ENCOURAGEMENT: It is pretty hard to be upbeat about this portion of treatment, but you will get through it. A slight upside is you are too sick to be responsible for anything, so you get to kick back a lot.
Though you do get a lot of emotional support from friends and family, for the most part this time really sucks.
TIPS AND TRICKS:
Follow your surgeon’s advice: You will probably be able to sip juice and broth and later eat certain solid foods such as puddings and strained cream soup while you are still in the hospital. When your doctor says its OK, you will be able to eat very soft, very bland foods. This isn’t a time to experiment on your own. You want your redone digestive tract to heal properly!
You’ll likely be on tube feeding or TPN: OK, this doesn’t sound like much fun and it isn’t. But compared to trying to force food down a rebellious digestive track a feeding tube which puts formula directly into our small intestine will seem like a Godsend. Without such supplements to eating, you are unlikely to be able to eat enough to maintain weight, especially if you have chemo after surgery.
The tube feeding is intimidating at first, but you will get the hang of it. If you have problems there are professionals from the hospital or home health agency that are extremely helpful in resolving issues.
Feeding tubes do not work with some people, and Gary was one of them. The alternative is something called TPN. With TPN, nutrients are pumped directly into your bloodstream. Again, you will have lots of help from professionals. They will make sure you know exactly what you are doing.
This is practice time for your redone digestive tract and your new stomach: You may not really feel like eating. You will probably feel full and not have much appetite. It is good to try anyway. Eat small amounts of food very frequently through the day. Try to eat on a schedule, say about every two hours. Over time your stomach will stretch and be able to hold more.
This isn’t time for fancy food. We found it helpful to use custard cups for small amounts of basic food: canned soups, cottage cheese, applesauce, fruit cocktail, ice cream.
Drink liquids at a different time than solid foods. Gary was actually barely able to tolerate any liquids. Most advice is to space liquids out 30 minutes to an hour before or after eating solid foods.
Expect to throw up a lot. Since there is no acid in your stomach, because there is no stomach, this isn’t as unpleasant as it sound.
This can be a very discouraging time. Be aware that eventually your eating will return almost to normal. It will take a very very long time, but eventually it will happen.
Get a recliner: If you don’t already have a recliner, this would be a good time to buy, rent, or borrow one. You’ll be spending a lot of time not feeling good and wanting to rest, but you will need to have your head slightly elevated. A recliner is a great way to do this.
Check out suggestions for specific challenges: You can probably expect a lot of side effects: nausea, retching, belching, etc. This isn’t pleasant for you or your family. But again, remember that it won’t always be this way.
For help with these challenges see the web pages on nausea, retching, and poor appetite; gas; reflux; and low blood sugar.