Things are going well. We made it home a couple days ago (9/25), and it has been nice to be surrounded by our furballs, and familiar surroundings. Oh, and my bed is so comfortable compared to the hospital and NIH lodge!
With this post, I thought I would give you a little glimpse into my new normal of stomachless life. My goals as of surgery are, not to loose weight too fast, eat as many calorically dense foods as possible, get back to exercising slowly and as tolerated, have as many positive food associations as possible, and stick to the phase 1 post-gastrectomy diet recommendations so I don't have too many bad experiences with food, and don't experience the dreaded dumping syndrome.
Ok, so here are some of the guidelines and routines I have been following. Keep in mind, these are all recommended by my medical team, so I am not just pulling this stuff out of a hat. I am following the literature and recommendations to a "t" to make sure I have the best post surgical outcome possible.
Rule #1: Eating a couple of ounces of food every couple of hours. Because I have no reservoir (stomach) there is only so much that will fit at a time. So, I have to stick to very small amounts of food even if I feel like I could eat more. You know that saying, "your eyes are bigger than your stomach?" Well, without a stomach, this is especially true. This is the biggest challenge I have had so far. When preparing foods, or buying foods, or thinking about foods, I automatically revert back to the amounts I was able to eat prior to stomach removal. This makes sense of course, since I lived with my stomach for 33 years, and am only 2 weeks in to my new normal. But, I am constantly reminding myself, don't buy that much, don't put that much on your plate, etc. Because, when it comes down to it, my body cannot accommodate much more than a few ounces of foods, or fluids at a time. I have broken this rule a couple of times, and eaten more than a couple of ounces, and it physically hurts for anywhere from 5 minutes to an hour. So, not worth the pain.
Rule #2: Not drinking fluids at the same time as eating solids. The rule is, to alternate between eating and drinking and make sure there is at least 30 minutes between eating and drinking. The reason for this? Well, to put it bluntly, if I were to eat and then drink at the same time, the fluid would wash the food right through my system and that wouldn't be good for my daily caloric intake goals. This rule may seem really straight forward, but it has been one of the most difficult. It is just part of our culture to eat and drink at the same time. I find myself reaching for drinks while I am eating, so I have found it easier to just make sure there are no fluids around me while I am eating so I don't accidentally do it without thinking.
Rule #3: Sticking to foods on the phase 1 post-gastrectomy "diet" as outlined by my medical team. I put diet in quotes because this is unlike any other diet I have known. I will literally become physically ill if I do not stick to it. So, there are no "cheat days" like other diets, there are no moments of weakness, there are no "oh, I will just do better tomorrows." I stick to it because I don't want to be sick, and because I want to maintain positive food associations. According to my dietician, she said often people will start having aversions to foods if they eat them and then become sick. And, because there are so few foods I can eat right now, I cannot afford to be turned off from any foods. I need to eat as much as I can and as frequently as I can to maintain my health and wellbeing. So, sticking to the "diet" ensures that I will maintain positive food associations, and can keep getting food in and aiming for daily caloric and quantity goals.
Rule #4: CHEW, CHEW, CHEW. Part of the stomach's functions is to mash up and partially digest the foods we eat. We can basically swallow things with very little chewing and the stomach takes care of the rest. Without a stomach, my teeth and saliva have to do the job of the stomach. I have to chew everything until it is pulverized. Let me tell you, it can be exhausting!
Foods I can eat: High protein foods, calorically dense foods, soft, well-cooked foods.
Foods I cannot eat: Sugar (this might not seem hard, but next time you eat something, look at the label and if there are any added sugars, or if sugar or any sugar substitutes are in the first 3 ingredients listed, that is a food I cannot eat). I have been really surprised at how much sugar is actually in EVERYTHING!! I had no idea! Because I have no stomach, and no valves to slow the movement of food through my digestive tract, pure sugar can be absorbed too quickly, which leads to a spike in insulin levels, and which can then lead to dumping syndrome which can be a really serious medical problem. Seeds, whole grains, anything with added fiber (because my gut is still healing, I need to be careful about what goes through it. Everything needs to be chewed to a mush and anything with a lot of fiber will cause big problems). Plain water (don't ask me why, because no one really knows why, but plain water tends to get stuck in my throat and does not feel good going down. I can add a little lemon juice, or any other liquids to water and it goes down just fine. This is not just me, it is a big problem with a lot of individuals who have undergone this surgery. Supposedly it has something to do with the surface tension of plain water, but who knows for sure). Foods with limited caloric and/or protein value, basically foods that take up my 2 ounce limit but have very little calories or protein (examples would include vegetables, plain liquids, carbs without a protein source, etc.). Alcohol, and Caffeine (both of these drugs could have ill effects on my newly constructed gut, not to mention my mental well being at this stage in the game).
So, maybe this doesn't seem like such a difficult "diet," but when trying to figure out what to eat for my 2 ounce portions has proved a bit difficult. The foods I am craving, are not necessarily the best foods for me. It is a learning process, and you better bet I am keeping a detailed food diary to keep track of what works, what doesn't, and when I am eating/drinking, etc. Oh yeah, I have a bunch of vitamins I have to ingest now as well, and the timing is a bit tricky, so I am keeping track of those too. Because the stomach and the acid in your stomach help absorb certain vitamins and nutrients from food, I have to take high doses of calcium, B12, and other essential nutrients to ensure I am getting the right amounts. These levels will be tracked carefully during follow up NIH appointments.
I have been busy since I got home. I went grocery shopping and bought a bunch of foods that I can eat. Luckily, Andy and I planned well before leaving for the NIH, and I completely cleaned out the fridge and cupboards of things that I knew I wouldn't be able to have after surgery. My mom brought up a good point today, she said it is like an alcoholic coming home from treatment, you have to make sure all the alcohol is out of the house. I guess we did the same thing with the foods I knew I wouldn't be able to have. And, Andy is being a good sport and eating most of the things that I am eating for now. That way I am not watching him eating everything I can't.
Fingers crossed, this phase 1 "diet" will only last for about 2 months or so. After that, I should be able to start adding foods slowly back into my diet until I am eating most of the things I was able to eat before. Sugar, however, will likely always be an issue, so that is pretty much out. But, I look forward to healing, and being approved to start getting back to my foodie status. It is pretty hard to eat out right now, since I basically can't eat anything it seems!! Doesn't mean I haven't tried, but as I get more used to things and realize what works for me, I will be more confident as we go out.
I have a lot more to say, but for now, this will have to do. Feel free to ask me questions, and I will try and keep explaining things as I go. For now, it keeps me busy just trying to keep eating, drinking, taking my vitamins, recording everything, and getting a little bit of exercise each day.
I am grateful for the NIH, my medical team there, all the knowledge and support I have received from fellow seahorses and friends and family, and how well my recovery has been going so far.
Talk to ya'll soon,
Kate