Tips & Experiences — No Stomach For Cancer

One size does not fit all when you have no stomach!

Knowledge is power…so please take what you can from the experiences of others who have been down this crazy road before you. Share your tips and experience with others too.

The Facebook Page for Partial and Total Gastrectomy Patients was created on the 10th July 2012 by Stomach Cancer Survivor and Total Gastrectomy Patient, Michelle Lykokapis. Michelle was 39 years old when she received her diagnosis in 2011 and went searching for others who were looking for support and information to what how life was going to look without a stomach.

As the community has grown so have the resources. A dedicated website was created as another way of supporting those that need a place to connect to others who have been through or are contemplating gastric surgery due to health related issues.

Our community has many shared experiences to offer, and we invite you to get involved, share your story, ask questions and make connections. The original Facebook Page was created for this very purpose, and the Gastrectomy Connections website serves as an additional resource for those seeking support and information.

Visit our Gastrectomy Connections patient and caregiver support website at https://gastrectomyconnections.com/

The content of the Site is not intended as, nor should it be considered a substitute for, professional medical advice, professional diagnosis, opinion, or treatment to you or to any other individual. See our full disclaimer for more information.

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In the Hospital after Gastrectomy Surgery

Get up and walk! Moving about will wake up your body’s systems and get things moving again. It helps to speed up your recovery.
Listening to relaxation tapes on your iPod helps if you have trouble resting, relaxing, or sleeping.
Bring your own cozy robe to wear over your hospital gown.
Those discharged with J tubes (feeding tubes) for a period of time following surgery should be aware of issues with clogged tubes and pain or infection at the insertion site. Ask questions about the J tube before discharge, including what to expect. Call your doctor if you are having pain or other problems or concerns.
Gastrectomy patients typically start on liquid and mechanical soft diets in the hospital. Often the sugar content of your food options is overlooked. Limit high sugar foods to avoid dumping syndrome. It will help to make your first eating experiences a little bit better.
Bring wet wipes! Your bottom will appreciate it on those active bathroom days 🙂

Eating & Drinking after Gastrectomy Surgery

You are learning to eat again, so start slowly. Think babies…starting with liquids, then soft foods, leading up to tender solid foods, and on you go.
Pass on chunky or sharp foods at first (two to four weeks post-surgery). Keep things smooth going down the new path.
In the early days, don’t be surprised if it hurts when you swallow, even when you are just drinking water.
Most people lose their sense of hunger, and often it is hard to tell when you are full. It’s hard to listen to your body when it comes to eating in the early days. Establishing a regular routine for eating is helpful.
Use your phone alarm to remind you when it’s time for your next small meal, snack, or water.
Focus on eating when it is time to eat. Don’t eat when you are anxious, excited, rushed, or talking. Concentrate on your meal. Take your bites in bits. Relax. Breathe.
Watch your portions. Use smaller spoons and eat off smaller plates – it helps you to take in smaller amounts at a time. It’s so easy to overeat or feel full too quickly and it can take a while to resolve the discomfort.
Moist foods may go down easier than dry foods.
Puree or blend food at first if it is hard for you to chew, chew chew. We aren’t accustomed to chewing our food so well. It can be hard to do, even when you are making a conscious effort.
Consider all foods to be ‘new foods’ for you. Advance slowly, literally trying one food at a time to help you identify what you can tolerate and what isn’t working right now.
Tolerances for hot and/or cold foods may change.
When foods are not tolerable, do not despair! Be patient and try again in two or three months. The body continues to adjust and tolerances will change over time.
Start with softer, lighter proteins such as fish, chicken, turkey. Easy does it on red meats that are heavy and more difficult to digest.
Experiment with seasonings and spices, as some may not agree.
For discomfort after eating, some people find laying down or sitting still helps. Others find it helpful to gently walk after meals to help feel less full. Try different things to find what works for you.
Watch the sugar. Typically under 14g per serving, even less in the early days. Remember that it is per meal, not per item. For example, cereal, with berries, and milk…the sugar adds up fast. And yes, milk does have sugar in it!
Sugar-free candies can satisfy your sweet tooth at a time when it’s tough to tolerate sugars. But beware – sometimes the effect of artificial sweeteners on your digestive system just isn’t worth it!
Over time you’ll learn that some sugars are more tolerable than others. It won’t take long for you to figure it out.
Lose the low fat, no fat mentality that we’ve worked so hard to achieve. Add calories to your diet with full-fat food and condiment options.
Keep snacks handy, and use a small cooler if necessary. Things like cheese sticks, cottage cheese, peanut butter crackers, homemade trail mix, and protein drinks are some favorites.
Go for the calories – you want to take in as much as you can to slow down the inevitable weight loss. High-calorie proteins will help, and for those who love smoothies, try some of these high protein high-calorie drink recipes that have been modified for gastrectomy patients.
It’s a lot of work to keep hydrated. Shoot for 64 oz a day, taking 4 to 8 oz at a time all throughout the day, alternating with food.
If you can’t tolerate plain water (which happens even to those who have been plain water lovers forever), try Crystal Light, natural citrus flavoring, or light decaf tea. Gatorade G2 is a good choice – the electrolytes are helpful and it’s a lower sugar option for drinks of this sort.
Caffeine tolerances vary. Many report problems in the first three to six months, but often it resolves.
Don’t worry about burps, ‘goat or frog sound’ or hiccups initially. It usually subsides after a short while.
Gas can be a new issue after surgery. Often it’s mild but sometimes can be more severe. If the severity is such that it is a problem for you, talk to your doctor about a prescription,or try some over the counter aids.

Is it Stuck in your throat?

Sometimes food feels like it is stuck. That is not unusual in the early weeks.
If you’ve eaten too fast, swallowed too much, or feel like something is stuck, tapping firmly with your four fingers in the area of your esophagus may help.
Talk to your doctor about ongoing issues with difficulty swallowing or feeling that food getting stuck. It may be indicative of a stricture that can be corrected with balloon dilation or other post-surgical treatment.

Supplements for the Stomachless

B12 injections (or sublingual B12 if effective) are a necessity. Do it at home – don’t forget it! It’s easy to do, and your medical care provider can train you to do this. Subcutaneous injections (in the fat, not the muscle) are painless and very easy to self administer. Get started on a monthly injection within the first three months of surgery.
Chewable vitamins with iron are best in the first months. Choose one that is dosed for an adult.
Calcium Citrate is the better absorbed following gastrectomy. It’s hard to find at your neighborhood pharmacy but is readily available online. Try Bariatric Advantage for a variety of chewable flavors and dosages.
Taking iron supplements is important. If you find it hard to tolerate on a daily basis, try taking tablets every other day.

Bowel Movements

Bowel movements will change for a while, and it’s hard to know how they’ll change for you. Consistency, color, odor…and it may change from day to day. Like most things post gastrectomy your body will adjust and settle into a new normal. However, if you have ongoing issues with diarrhea or constipation, talk to your doctor. Pay attention to your bowel movements as they can signify other concerns, such as malabsorption.
Bowel movements may come on quickly in the early days. Be prepared when you are away from home. Scope out the joint in case you need to make a mad dash. If you are out to dinner, locate the restroom so you can get there quickly if need be. If it makes you feel more secure choose a table nearby.

Your New Plumbing

You may be surprised with all the noise! Your gut will still make rumbling noises – and sometimes they are quite loud. Early on it may mean it’s time to head for the bathroom. In later months it is often just things working their way through.
Butterflies must not be in your stomach, because without one you may still have those sensations when driving fast over a hill, or on a tilt-a-whirl! Feeling nausea or feeling ‘sick to your stomach’ clearly is no longer in your stomach. Is it your brain, or your other brain?

Dumping Syndrome and other Symptoms

Often nausea is caused by eating too much or eating fried foods or some other food that simply does not agree. Try chewing peppermint gum. Orbitz is a favorite. Often nausea will resolve in 5-10 minutes. Just don’t swallow it or you’ll be trading problems!
Hair loss is common three to six months post gastrectomy. Often it is due to rapid weight loss and will resolve on its own. If it does not resolve, talk to your doctor for an evaluation of your nutrition levels. Nutritional deficiencies may be the culprit.
Read about Dumping Syndrome, both early dumping, and late dumping. You will experience this at some point in time. Often it can be managed through dietary habits and choices, so pay attention.

Sleeping Adjustments

It takes a lot of energy to heal from surgery. Sometimes you need more sleep or an afternoon nap. Listen to your body and take advantage of opportunities to get some extra rest.
Pillows of all sizes, shapes, and firmness are helpful to provide comfort and support when sleeping may be a challenge. For side sleepers, tucking one under your back provides just the right support. Hugging a firm pillow helps support the tender abdominal area following surgery – especially when you cough or sneeze. Wedge pillows help when you are not comfortable lying flat in the beginning, or ongoing if you have issues with bile reflux.
Some people experience intense night sweats in the early days. Lay a bath towel on top of your bedsheet and another to cover your pillow. Keep extra towels and sleep shirts or t-shirts nearby. If you wake up drenched, it’s easy to do a quick change of towels and sleep shirt, rather than trying to change bedding or having to try to sleep on soggy sheets.

Home From the Hospital

Get out of the house. It will help you feel more normal, and walking is good for you. Do errands with a friend, or go out for a light breakfast or lunch. Getting back to normal activities feels good. But, take it slow – yes YOU Type A personality. Your body needs nutrients, rest, and time to heal. Overdoing it will not move you forward faster.
Accept offers of help with cooking, meal preparation, shopping, household chores, and other errands.
When times are tough, remember that things are likely to improve over time. Think of your progress in terms of one month or three month periods of time. Day by day things may be up and down, hopefully with more ups than downs. Go with the flow. Do things that help keep your spirits up.
Stock the fridge with things you can eat and are easy to prepare. If you are in a household with others, mark your territory in the fridge and pantry.

Scars from Surgery

Keloids scars are raised and often reddish scars. If your scar turned out this way following surgery and you aren’t liking it, don’t fret. Often times a simple steroid injection treatment performed by a dermatologist will resolve the problem. Give it a year following surgery to see how things shake out.

Favorite Products

Bariatric Advantage Chewable Calcium, Orange flavor