Total stomach removal will no doubt result in some lifestyle adjustments during the first 12 months after surgery. However, after 12 months, you will most likely be living a fairly normal life.
In 2015, a team of nearly fifty of the most informed CDH1 healthcare professionals from all around the world published the 2015 guidelines for the clinical care of CDH1 mutation carriers. Those professionals report that the“main adjustments with regard to diet and nutrition postgastrectomy have to do with (1) maintaining weight; (2) ensuring adequate fluid, nutritional and caloric intake; and (3) behavioural modifications surrounding eating.”
Those researchers also report that other problems “may include lactose intolerance, steatorrhoea, small bowel bacterial overgrowth, anastomotic strictures and postprandial fullness.” Based on my family’s experience, I would also add to the list: hernia repair surgery, bowel blockages, and collapsed lung. Despite this long list, this article focuses on eating-related problems.
It may be helpful to divide living life after total stomach removal into three phases: (1) pre-surgery, (2) the first 12 months after surgery, and (3) 13 months after surgery and beyond.
Before surgery, you need to research and plan your eating and recovery. This should help make your recovery easier.
During the first 12 months, among other things, you will need to learn the art of eating without a stomach. Also, your body will need to build up tolerances to certain foods in order to avoid or minimize dumping syndrome. Moreover, you will need to figure out what other lifestyle adjustments are necessary.
After the first 12 months, you will likely need to continue with many of your lifestyle adjustments, including this new art of eating. Plus, you will need to monitor your vitamin and mineral levels to make sure you are absorbing enough nutrition to stay healthy in the long term.
This article addresses the art of eating without a stomach, dumping syndrome, and monitoring absorption of nutrition without a stomach.
Total Stomach Removal: Pre-Surgery
When deciding where to have total stomach removal surgery, be sure to research what options exist for post-surgical care and choose the one that suits your preferences. Many care centers will be able to help patients adjust to eating with their reconstructed digestive tract. The 2015 guidelines report that “postgastrectomy recovery programmes are now well established.”
These recovery programs, however, can vary from place to place. Generally speaking, a dietician can help with nutritional problems and eating strategies in an effort to minimize any potential issues. Regardless, the patient will need to implement lifestyle changes.
Although many centers have teams to help patients with eating, ultimately the patient needs to take responsibility. Although the guidelines say: “Experienced dieticians focus on nutritional problems and strategies for maintaining weight after surgery, while patients focus on lifestyle changes,” I have found that the patient needs to spearhead the eating strategies with input from the dietician.
However, it is not always easy for the patient to take the lead, at least at first. The 2015 guidelines warn that “patients often require considerable support during the first 12 months after surgery” and that the required support “will depend upon the local healthcare services and the distances required for patients to attend the centre.” The guidelines report that some centers will “maintain regular contact by telephone and the use of modern video-conferencing.”
To minimize these challenges, patients should research and design their eating strategy before surgery. Plenty of resources exist for this. For instance, as the 2015 guidelines recommend: “Patients should consult a dietician prior to surgery as an awareness of baseline nutritional status and dietary habits will benefit the patient in postsurgical nutrition, diet and weight management.” Also, the Facebook group for people with a CDH1 mutation includes many people who can answer your questions. Moreover, reading through the feed history in the group will no doubt answer many of the questions you have and help you address things you had not yet thought of.
The First 12 Months After Total Gastrectomy
The short-term recovery for each patient is unique and cannot be predicted beforehand. Some patients have only minor challenges or complications in the first 12 months after surgery. Others, however, may have more serious challenges, both physical and mental.
As reported by the 2015 guidelines: “The psychological, physiological and metabolic impact of a total gastrectomy should not be underestimated. The physical impact of a gastrectomy is difficult to predict for any individual. . .”
Despite this sobering news about the impact of total stomach removal, most patients report that their quality of life after gastrectomy is similar to the quality before gastrectomy around 12 months after surgery. That said, some challenges may remain. For instance, the patient may experience abdominal pain, body image issues, and some eating-related issues.
In the words of the 2015 guidelines: “Reassuringly, global quality-of-life scores recover to presurgery levels at around 12 months postoperatively; however, problems with eating, abdominal pain and reduced body image persist beyond this time.”
It is great news that the challenges patients face, whether major or minor, tend to improve with time and experience. One of my cousins, poor thing, had to have an emergency bowel resection 8 days after her gastrectomy to fix a blockage based on how she was healing. Unsurprisingly, this led to mental and physical challenges with eating and other aspects of daily living. She has recovered nicely and is now thriving.
My aunt and another cousin each needed hernia repairs after their gastrectomies. Also, they each had a stricture multiple times. A stricture is an abnormal narrowing, which can occur at the new connection between the esophagus and jejunum. Fixing it is relatively routine and painless, but having a stricture can be a scary and stressful experience for the patient. My aunt and another cousin also faced mental and physical challenges learning how to eat again.
Fortunately for me, I had zero complications that required medical intervention. Like my aunt and two cousins, however, I have had several eating-related issues. For instance, we have all experienced some form of dumping syndrome, which I describe in more detail below. We have each eaten too much in one sitting, which causes pain and sometimes reflux issues. Finally, some of us have had unwelcome bacterial growth in the small intestine caused by something we ate.
Also, we all have struggled at times with weight loss. At my lowest, I was 22% below my pre-surgery weight. I was about 10 lbs overweight before my surgery, which helped prevent me from becoming too thin at my lowest.
The 2015 guidelines explain that patients typically lose about 22 pounds (10 kg): “The median weight loss 1 year postsurgery is 10 kg. This means that patients who are underweight preoperatively or who have a history of eating disorders need very careful counselling and support.”
Although this amount of weight loss may discourage some patients, patience and persistent eating will result in you returning at least close to your original weight.
Regardless, each of us have lived at least 12 months without a stomach. All four of us are doing great!
The Art Of Eating Without A Stomach
One issue every patient will face is learning how to eat without a stomach. No universal set of eating rules exist because each patient’s experience tends to be unique. For instance, a food that is safe for one patient may cause problems for another. Moreover, a food that is safe for you one day may cause you problems on another day.
As one paper explains: “While there are some basic dietary principles that apply to most patients with gastrectomy, there are no absolute rules. Each patient’s recovery is unique, from food and quantity tolerances, to comfortable eating habits. Variability is observed between patients, but also for individual patients during the course of their recovery . . . Patients are encouraged to continue to experiment and discover what is best suited to their needs and tolerances.”
Below, however, are some guidelines that will help you perfect the art of eating without a stomach.
Without a stomach, one needs to eat smaller meals, chew their food thoroughly, and eat fairly slowly. That’s because we don’t have the extra storage space that the stomach provided, nor do our guts send a signal saying when we have eaten too much. As a result, to consume enough calories without over-eating at one meal, the stomachless need to eat more frequently and slowly, portion out their meals, and focus on soft, calorie-dense foods.
Indeed, the 2015 guidelines say: “Following a prophylactic gastrectomy, patients initially have to eat frequent small meals. Eating too much and/or too quickly will cause abdominal pain.”
To make sure I consumed enough calories each day and to avoid the eating problems mentioned above, I sized out my food portions. I used a food scale to weigh my food or ate pre-packaged meals. I ate soft foods that were calorie dense. I also counted my calories each day to make sure I was close to 2000 calories. This strategy allowed me to snack every hour or two without much worry. I tried to avoid filling up a plate without knowing how many calories I had on it.
Some days I came nowhere close to 2000 calories. Other days, however, I ate close to 3000 calories. The important thing, in my opinion, is to listen to your body. Lean toward 2000 calories. Set that as your intention. But do not force it. It’s okay to have bad days.
Moreover, some patients may have psychological challenges when it comes to eating. The 2015 guidelines address this: “The Anatomical changes can make the act of eating difficult, and patients may become disappointed by these hurdles. This can further complicate weight management with the psychological burden of eating.”
In our family, several of us have experienced this exact issue. It can occur after having bad reactions to eating. For instance, pain and discomfort from eating caused some of us to temporarily dread the act of eating. However, with time, persistence, exercise, and a strong support system, we have all overcome this.
Furthermore, eating (and sometimes the mere thought of it) can be draining. The 2015 guidelines say: “In the early stages of recovery, intentional eating, drinking, management of symptoms and resting can quickly become draining. It is important for patients to have realistic expectations for their progress and improvement over time.”
For me, I definitely have had times when the act of eating was draining. Even just the thought of it would wear me out. Especially at the beginning of the day when my calorie count was at zero. The thought of consuming 2000 calories sounded unachievable. However, each day I tried to do the best with what I had that day. Plus, I learned that I liked eating most of my calories later in the day. So, my goal became to chip away at the calorie count early in the day, and then get the rest later when I felt like it. Despite the occasional feeling of eating burnout, I have managed my eating really well.
How To Avoid Dumping Syndrome
When eating without a stomach, one needs to be aware of the possibility of experiencing dumping syndrome. One paper reports that over half of patients in a Japanese study reported having experienced dumping: “Over 50% of 269 post-total gastrectomy patients complained of some dumping symptoms in a large Japanese study.” In my family, 100% of us stomachless individuals have experienced dumping syndrome.
Dumping syndrome can occur because the food enters the small intestine too rapidly and at an earlier stage of digestion when compared to someone who has a stomach. Typically, people talk of sugar – specifically, added sugar – as the culprit for causing dumping syndrome. In contrast to added sugars, natural sugars tend to be okay. For instance, eating a banana (12g of sugar per 100g banana) has caused me no problems.
What is dumping syndrome?
As one paper explains, dumping syndrome was initially described in 1913 as “a loosely connected constellation of symptoms experienced after meals, with early symptoms being predominantly vasomotor and late symptoms related to reactive hypoglycaemia.” The 2015 guidelines explain that because of the altered gut anatomy following total stomach removal, “food moves rapidly and directly into the small intestine, where it digests faster” and therefore “the pancreas produces more insulin in a short time.”
Because of the extra insulin in the bloodstream, the body experiences a rapid decrease in blood sugar. This “may lead to cardiovascular and abdominal symptoms” It may also cause the patient to feel, among other things, clammy and uncomfortable. It may also cause temporary thoughts of everything feeling impossible or burdensome.
Most patients, however, build a tolerance for added sugar and other foods that might cause dumping. The 2015 guidelines explain that dumping “may be more common in the immediate postoperative period and often subside over time.” Plus, as the guidelines explain: “Dumping syndrome can be minimised or eliminated through dietary choices and modified eating habits.” They also say that dumping symptoms “tend to improve” over time.
13 Months After Gastrectomy And Beyond
The long-term effects of total stomach removal are not necessarily known. This is due to the procedure being relatively new and also because not enough long-term data has been formally collected and reported on young people who have had total stomach removal surgery. Indeed, one paper explains: “There is very limited data on the long-term outcomes of gastrectomy in young people” and that patients “undergoing gastrectomy for invasive cancer tend to be older and, until recent improvements in oncological therapy, had a poor long-term prognosis.”
However, anecdotal evidence suggests that living without a stomach is not only possible, but also that the stomachless can thrive for a long time, as if they still had a stomach. Indeed, in the Facebook group for people with a CDH1 mutation, some people who have lived without a stomach for 10 years report how well things are going.
Moreover, the paper above reports on information collected from a 24-month-long study. While not “long-term” relative to the average human lifespan, it may be instructive. The paper reports: “there were no long-term psychological or body image consequences of PTG in this cohort.” Though this is based on a small group of patients.
Furthermore, my aunt had her stomach removed in May 2017. Although her recovery has been no walk in the park, now more than 2 years after her surgery, she lives a relatively normal and healthy life. Plus, my cousin who had his surgery in August 2017 is also thriving. I do not expect that to change for either of them. Nor for my cousin who had her surgery in April 2018 or for me, who had his surgery in June 2018.
My family’s experience is typical of what is expected. The 2015 guidelines expect patients to return to a full and active life after total stomach removal. They say: “there is an expectation that most patients will return to a full and active life after their operation” and that “global quality-of-life scores recover to presurgery levels at around 12 months postoperatively.”
Please, however, do not confuse this with the notion that the stomachless always return to a lifestyle present before their surgery. Some may. Some may not. For those who do not, the lifestyle changes can be relatively minor. The types of issues they deal with are similar to some of those described below in the short-term section and also could be as a consequence of malabsorption.
Total Stomach Removal: Monitoring and Avoiding Malabsorption
All total stomach removal patients need to monitor nutritional levels to ensure they avoid nutritional deficiencies. The 2015 guidelines explain: “As a result of malabsorption, patients with postgastrectomy are at risk for nutritional deficiencies. Monitoring of nutritional levels in postsurgical follow-up is essential as deficiencies increase risk for other symptoms and health concerns.” Moreover, another paper explains that it “is unclear whether PTG in early adult life results in long-term nutritional consequences beyond weight loss.”
Patients, therefore, should diligently monitor their nutritional absorption to avoid long-term problems. In my experience, the monitoring is not bad at all. It requires a blood draw every 4-6 months and review of your results by your gastroenterologist.
In addition to monitoring, patients will need to supplement their diet with some vitamins and minerals. According to the 2015 guidelines:”All patients require lifelong vitamin B12 supplementation (either oral, subcutaneous or intramuscularly) to correct identified deficiencies, and close monitoring for conditions such as iron deficiency, anaemia, hypocalcaemia, osteoporosis and trace element deficiencies. Many dieticians recommend patients to take a daily multivitamin preparation with iron; however, it remains important to monitor iron levels since absorption will change after gastrectomy.”
Although monitoring nutritional levels in the short term is important, it is perhaps even more important in the long term. The 2015 guidelines say that “attention should be paid to any significant and prolonged changes, such as hair loss or extreme fatigue. These symptoms and changes away from the patient’s baseline may be indicative of nutritional deficiencies, which may need to be identified and treated.”
Another paper supports this notion: “In a study by Adachi et al., 59 patients of mean age 64 underwent bone mineral density assessment greater than 5 years after gastrectomy for cancer: 71% of women, and 18% of men, were found to have bone mineral density measurements consistent with a diagnosis of osteoporosis.”
Despite conclusive proof that total stomach removal will cause nutritional deficiencies, the prudent thing to do is to assume that it may cause deficiencies. Indeed, that same paper reports: “there is insufficient evidence to say whether micronutrient deficiency will become a problem after PTG but it is reasonable to expect some degree of vitamin and mineral malabsorption in this patient group.” Know, however, that you can do things to try to prevent it. Talk to your doctor about monitoring your absorption and what you can do to avoid complications.
Finally, patients should be forewarned that, without a stomach, they may not absorb all medications. Be sure to consult your physician about this. Also, be sure that whoever you consult has experience with advising patients without stomachs.
Watch a video of Dr Davis at the NIH talking about issues CDH1 mutation carriers should be aware of. Dr. Davis and the NIH are