DS Survival Guide

By Lori B.

You may find this DS survival guide helpful because after arriving home from surgery is somewhat like bringing home a newborn baby and not knowing exactly what to do. The surgeon and the nutritionist give patients guidelines and instructions, but many are still not sure where to go from here. Here are some simple things that I did in the beginning to transition into this new life of mine.

1) Hydration is the most important thing and trying to find the right amount of water the body can handle. This may require some creative way to make the water more enjoyable. Adding some lime or lemon helps to make the water taste less heavy in the stomach. Small continuous sips is a better way to get the water in since it is impossible to gulp for quite some time, but these sips are the only way to get in the required liquids, and aim for 64 oz. of liquids, through; soup, broth, water, crystal light, Fruit2O, decaf tea (warm or cold), and sugar free Kool-Aid. Note that the temperature might need to be changed based off of personal preference. Remember, the liquids used in protein drinks and soups all count as fluid.

2) Protein is very important after surgery, and next in line after hydration. Each item of food should have some amount of protein; it is not required to eat 100g a day from the start, but it is recommended to reach this goal as fast as humanly possible. Cheese, yogurt, cottage cheese, protein drinks, pureed or VERY WELL chewed meats are all good protein sources, but personal preferences will dictate what the body will accept. I went to the grocery with my husband and just walked the outside aisles looking for proteins that looked good and sounded like something I could/would eat. Protein is very important after surgery as it helps to build, repair and maintain tissues in the body, major organs and skeletal muscles. If protein is not kept up with over time, it is possible to develop protein calorie malnutrition (PCM). This is a disease that is usually well advanced when discovered and does take time to occur. It is easy to avoid this by getting in as much protein on a regular basis after surgery as possible. A patient should be getting no less than 30g of protein a day by 30 days out, 60g by 60 days out, and 90g by 90 days out. This is just a guideline; follow the surgeon’s instructions.

3) A patient may need to eat something every 2 hours during the day and evening. This doesn’t mean eating a feast every two hours; it means to just eat “something” (ideally protein rich) to get the stomach going. Just keep trying to get in more nutrition in with smaller frequent meal rather than a few large portions.

4) Sleep is critical to recovery. This time it is called recovery because it’s supposed to be used to recover. This is not the time to catch up with unfinished projects. Recovery should include, adequate hydration, nutrition, and rest. They are all important for a healthy and timely recovery from a complex surgery.

5) I know all of this is a lot at first it is normal to feel like the only things that are done is eating, walking, taking vitamins, and sleeping all day long. It’s a chore in the beginning for sure! Some patients need to set an alarm to remind themself of all of these things, that’s okay. Even an egg timer can help to stay on track! Don’t forget about the incentive spirometer for two weeks following the surgery.

6) Walking is very important to recovery. It is critical to walk often after getting home; walking often is better than the distance walked. Don’t over-do it, but don’t become complacent and get life-threatening blood clots. Also, remember to carry a bottle of water every time while going for a walk.

7) Vitamins are crucial to life after DS. The stomach will be very swollen in the beginning, so getting in vitamins can be a real struggle. Do what is needed, try to work up to a full vitamin plan by 4-6 weeks out.