Disclaimer: I am not a doctor. The information contained in this post is not meant to act as medical advice. These are tips, tricks, and lessons that have worked for me personally, or have been recommended by my healthcare team, and may not work for you. Please consult with your doctor before implementing any diet, lifestyle, vitamin/supplement, and/or medicine changes.
Tips, Tricks, and Lessons Learned After Total Gastrectomy: Life without a stomach gets easier as your body adjusts to the major anatomical changes. That being said, the beginning is VERY hard. As your mind and body are in shock from this life altering surgery, you may feel pangs of regret and fear that you will never live a "normal" life again. In my experience, although these feelings are fleeting, they still deserve acknowledgement. I am here to tell you, that it DOES get better, and you DO feel better, slowly but surely. I know other seahorses would say those exact words to me in the early days, and I doubted their message, but it is true. It is important to befriend fellow seahorses, since they are the only ones who will truly understand what you are going through. This surgery is unlike any other, and it is rare enough that conversing with someone who understands randomly is unlikely, so make sure to find someone. Even if you have stomachless family, it may be good to befriend someone outside the family, because some things are a bit embarrassing to talk about - as I will discuss further in this post (don't worry, I will label it *TMI*, so if you don't want to read it, skip to the next section). Just trying to keep it real here folks ;) Also, for those of you planning this surgery or having a loved one planning it, these are some of the things I wish I would have been told. So, you're welcome.
Left to Right: Pre-TG (167 lbs - BMI 30.5), 6-months post TG (125 lbs - BMI 22.9), 1-year post TG (119 lbs - 21.8).
TG = Total Gastrectomy, or total removal of the stomach and attachment of the small intestine to the esophagus (not to be confused with partial gastrectomy, sleeve gastrectomy, gastric bypass, or other bariatric surgeries).
Weight loss: The weight seems to fall off very quickly at first following total gastrectomy (TG). In the first month after surgery I lost about 12 pounds I think. As you can tell by the photos above, I lost 42 pounds in the first 6 months, and then only 6 more pounds in the following 6 months. I am happy to say I have been maintaining right around 119 for the past few months. This is a huge relief and means I must be doing something right in terms of managing my caloric intake and expenditures. The literature, my team, and fellow seahorses were correct. My body adapted to my new anatomy and my metabolism stabilized right around the 9 month mark. I now don't have to constantly worry about dropping weight for no darn reason!!
Expected weight loss after TG can vary greatly from person to person, but on average, and according to important data being collected at the National Institutes of Health (NIH):
Percentage of expected weight loss post TG is based on pre-TG BMI:
- 15 to 20% of BMI loss for those in normal BMI range at the time of TG
- 30 to 40% of BMI loss for those in overweight/obese BMI range at the time of TG
- And even up to 70% for those in morbidly obese BMI range at the time of TG.
People post-TG typically end up in the normal weight to underweight BMI range, but not everyone of course. So, think of it as, the more weight you have on your body at the time of surgery, the more your body will probably loose after surgery and vice versa. And, this typically happens within the first year post TG as your body is adjusting and adapting to the changes. After the first 12 months, your body kind of resets itself and that is your new baseline. Again, I am speaking in general terms and everyone is obviously different so there will be outliers to these assumptions. For me, I started out at a BMI of 30.5 and ended up at a BMI of 21.8, which is an 8.7 point drop in BMI, or about 28.5% decrease in BMI. This falls right within the above expected weight loss guidelines.
I have frequently got the question, "should I gain weight before TG?" And, my advice which mimics that of my surgeon is, try to maintain your weight prior to TG. Don't try to gain, and don't try to loose. It will be less of a shock to your system if your body is in equilibrium at the time of surgery. Also, the more you gain, the more you will loose and the more stress on your body. I did gain weight in the years before surgery, but not on purpose. Chemotherapy, and hormone therapy slowed my metabolism to a crawl, but I was luckily maintaining at the time of surgery.
*TMI* Text in blue is filed under the TMI category, so skip the blue text if you don't want to read this section.
Bowel Movements & Gas: I was so scared about diarrhea after surgery, but in fact, constipation has been more of a problem for me post TG. For me, constipation contributes exponentially to bile reflux symptoms (I will discuss this in more depth later in this post), decreased ability to eat and drink, and abdominal pain, and bloating. It took me months and a consult with my dietician to figure out these connections, but it makes sense since there is less space for food and liquids to sit. If one does not evacuate their bowels regularly and fully, it literally backs up and causes a lot of problems. For occasional constipation where nothing else seems to work, I use magnesium citrate (aka "the bomb" as one of my chemo nurses fittingly referred to it). That being said, only use this if absolutely necessary and make sure you have nothing else planned for the next few hours if you catch my drift! For regular bowel maintenance I use daily Miralax and/or Senna and/or Ducasate. These are all available over the counter, and you will have to use trial and error and as needed depending on your situation.
Staying hydrated is key. In the beginning - about the first 6 months - hydration was nearly impossible. I always felt thirsty, missed drinking plain water, and constantly had to remind myself not to gulp liquids despite my thirst. Drinking some things was painful, drinking large mouth fulls of anything was painful, plain water felt stuck in my throat and caused a weird sensation of increased saliva and phlegm in my throat and also increased bile reflux symptoms. It was definitely frustrating, but I got the hang of what worked and what did not, and my hydration gradually increased over time. I remind new seahorses now, that even thick liquids count as hydration. That was something I didn't know in the beginning and once I realized that soups, bone broths, whole milk, smoothies, protein shakes, etc. counted as "liquids," I was finally on my way to quenching my thirst. Hydration can become a vicious circle, so it is best to stay ahead of the game if you can. Constipation leads to being unable to eat and drink, and dehydration leads to constipation. See what I mean? Just get fluids in, any way possible, and keep sipping all day long.
Have you heard seahorses talking about being gassy, or their tummy grumbling? Well, I am here to confirm the rumors are all true. My tummy grumbles and makes more noises now than it ever did when I had a stomach. Weird, but true. Advice I received early on from another seahorse was, "never trust a fart early on in recovery." I laughed this off, but soon realized it was great advice. TMI? Don't worry, you will learn to tell the difference in time, but to be safe, follow this smart advice for yours and your family's sake.
Gas/farts happen, just like with people who have stomachs. But, without a stomach, this gas can come on quickly, very intensely, and sometimes seemingly out of nowhere. I have never had gas pains that doubled me over in pain, until I had my stomach removed. It doesn't happen often, but when it did the first time, I thought something was incredibly wrong. It is like you can feel that gas bubble moving its way through your system and until it escapes you are in misery. I have found that bending over helps a little. Moaning helps a little more. And, Mylanta with gas relief helps the most! Oh, and post-TG gas smells pretty bad, not gonna lie. So, if you ate something that creates this unpleasant side effect, my advice is to excuse yourself to another room, preferably one with an exhaust fan. Or, better yet, go for a walk outside and leave your troubles behind, literally. Luckily, as is common with everything without a stomach, the unpleasantries pass quickly and you can resume family movie night without missing too much.
Bile Reflux:Unfortunately, some of us stomachless folk are prone to bile reflux. This is a condition that can rarely affect those with a stomach, but more commonly affects us seahorses. Because we no longer have a stomach, we no longer have stomach acid, so we do not technically get stomach acid caused things such as heartburn, and medications that help relieve stomach acid conditions, don't work for us. What is bile? It is a digestive liquid (a base - not an acid - although it burns like an acid if you ask me). Bile is produced in the liver and stored in the gallbladder and aids in digesting fats and eliminating the body of certain toxins. Have you ever vomited a greenish-yellow very foul tasting liquid? That was probably bile. Bile can back up in the digestive tract, and without any valves or holding tanks (aka a stomach) that bile can work its way upward into my esophagus causing a lot of very unpleasant symptoms. Here's a link from the Mayo regarding some generalities about bile reflux, but not specific to those post total gastrectomy (as is usually the case with studies evidence out there since having a TG is so rare).
Here's my experience and what I have learned about treating/preventing bile reflux over the past year. The following are symptoms and possible causes:
Bile reflux can sometimes feel like a chunk of burning coal lodged in the part of your throat directly behind where your clavicle and sternum meet;
Bile reflux can cause nausea, excessive burping (sometimes bring up bile), vomiting, coughing, gagging, excessive phlegm, spitting, etc.;
Bile reflux can become so severe that bile ends up traveling upward while you sleep, which can lead to waking up suddenly to the burning liquid in your mouth. For me, this usually causes me to gasp and sit straight up from a dead sleep. This then leads to me sucking bile into my lungs which is VERY painful, coughing, vomiting, and sometimes aspiration pneumonia. Luckily, this has only happened to me 4x since TG. But, each time is horribly traumatizing, and I hate it. I also had no idea this was a thing prior to TG. So, I don't want to scare you, but I also want you to have some tools to hopefully prevent this too;
My bile reflux tends to be worse when I don't eat frequently enough, when I eat too close to going to bed, or eat high calorie fatty foods within a few hours of going to sleep.
Let's get to treatment and prevention (remember, this is not medical advice, but these things have worked for me personally so I hope they can work for you too):
Learn to sleep at at least a 30 degree incline. Do not lay flat, as this increases the chances of bile flowing the wrong way without any valves to stop it. I started out with a wedge pillow I purchased off amazon and have since invested in an electric adjustable bed frame since this will likely be lifelong;
Do not eat right before bed. My magic window is about two hours, but yours may be different;
Eat frequently. I know the last thing we want to do when we feel that burning or nausea related to reflux is eat, but trust me, it helps;
Keep the foods and remedies that work to reduce your reflux on hand. Some examples that work for me are, plain greek yogurt, whole milk, Mylanta, and Carafate (Rx);
Talk to your medical team about medications that could help. No use you continuing to suffer if you don't have to. These are two prescriptions that have worked well for me.
Carafate (ask for this in liquid form as the pills are very difficult to swallow when having symptoms). This medication treats bile reflux symptoms by coating the esophagus and reducing burning, nausea, vomiting, etc. It can be taken as needed for symptoms.
Cholestyramine (comes in a powder form that is mixed with liquids). This medication is very new to me, but it has completely changed my life! It works to prevent bile reflux by binding to foods/cholesterol in your bloodstream and preventing the production of bile by the liver. It should be taken daily as a prevention of symptoms.
Supplements after TG: Without a stomach, our bodies can no longer absorb certain nutrients and supplements are necessary life long. Here they are:
Calcium Citrate: This is the only form of calcium that can be absorbed without a stomach. I didn't know there were so many forms of calcium supplements, but there are.
Vitamin B12: There will be some debate here. Some people say you have to inject B12 intramuscularly on a regular basis, but the NIH has found that daily oral megadoses of B12 are just as effective as shots. I have had no issues and take this through my daily bariatric multivitamin.
Iron: Stomachless individuals are commonly low in Iron due to not being able to absorb it from foods as well as pre-TG. I had low iron at my 3-month post TG visit, and had to receive an infusion. But, luckily, I have been able to maintain my levels with my daily multivitamin with added Iron.
There are many other nutritional needs not covered here, so make sure to work with your medical team and dietician to monitor your levels following surgery. I take ProCare Health Bariatric Multivitamin Capsules with 45mg added Iron daily, along with 1500mg calcium citrate split into 500mg doses throughout the day since we cannot absorb more than that at one time. My vitamin levels were perfect at my 1 year check up. No, I do not receive money or compensation of any kind if you click the above links. Just want you to know what has worked for me and where I order from (cheapest).
Eating/Drinking after TG: When it comes to hydration, don’t be afraid to try different things. A few of the liquids that worked for me in the beginning were whole milk, homemade smoothies with plain greek yogurt, ice, unsweetened fruit, and other additions depending on my desires that day, orange juice mixed 50/50 with water, soups, bone broths, protein shakes, and herbal tea. Now, I like vitamin water zero, coffee with tons of cream and added protein, protein shakes, whole milk, coconut water, and herbal teas. Regular water is still painful most of the time. Mix it up, you don’t want to get bored and not drink enough. Hydration is a full time job. I also try and add protein and calories to liquids if at all possible. It helps to meet your food goals and liquid goals simultaneously.
Protein is a must. I was told by my dietician that I need to ingest 90-120g per day. I don't hit this goal most days, so there is still work to be done. I cannot eat too much protein at one time either, or I get a belly ache, so that complicates things. But, protein powders (muscle milk, premier protein powder, and vital proteins unflavored powder are a few of my favs) and meats, seafood, nuts/nut butters, seeds, some veggies, and dairy help me reach my daily protein goals.
Caloric intake. I was told I should be getting at least 1900 calories per day to maintain my small size. I hit this most days, but in the beginning, I was lucky to fit in 500 (hence the rapid weight loss). Without a stomach, and malabsorption of nutrients common place, my dietician says I will always need more calories than someone with a stomach because part of that food will not be absorbed. So, more food needs to be ingested to compensate.
Munching on small meals all day long is key. This is getting easier and easier. And, I am lucky because I still feel hunger like I did when I had a stomach. This is not typical for someone without a stomach. Most of my seahorse friends say they do not feel hunger at all, so it just becomes routine/habit. I also listen to what my body is craving because I figure it knows what it is talking about. When I craved seafood early on, it was probably because I needed more easily chewed and digested protein. So, I just go with it.
In fact, I eat and chew on things so much throughout the day, I have learned to chew while I am doing other things. For instance, I may be finishing up mashing cashews to a paste with my teeth while also doing laundry. Or, I may take a large bite of a sandwich, and while chewing that for what feels like forever, I can take the dogs out in the yard, or grab the mail.
With the more calories and liquids you are able to consume in the months to follow surgery, the more energy you will gain back. In the beginning I felt weak and exhausted most of the time, but only taking in 500 calories at a time and my body burning its fat reserves to make up for that deficiency, makes sense that I wouldn't feel energetic. Now, I am happy to say my energy is returning. And, I am able to drink much more as well, so being hydrated helps tremendously too.
Ok, I could keep writing and writing, but this post is long enough. If you made it this far, thank you. Here's to the next year of stomachless life being better than the first! As always, feel free to comment, or ask questions as I remain an open book. And, I truly hope this helps some of you!
Peace and Love,
Kate
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