In my previous post, POD2, I wrote about the immediate after surgery experience and pain. That bit has gotten much better. At one point I was worried I wouldn’t have enough narcs to get me through to my follow up appointment, but now I have I few extra pills just in case of emergency and I haven’t even used any pain meds, including acetaminophen, in the last couple of days. That said, I still feel like I can feel everything I eat traverse my entire GI tract, but the discomfort is transient and not bad enough to take medicine for. This too is also getting better.
The biggest issue of late has been eating. The first couple of days after surgery I was on a clear liquid diet. This consisted mostly of a variety of broths— chicken, beef or veggie— served with decaf tea and orange jello. I have no idea why I kept getting orange jello, but it would definitely have never be my first choice flavor.
Days 2-14 are what is called “Phase II” of the post total gastrectomy diet. This is where I can eat pureed foods. Essentially, I am a 6 month old baby who gets to try some solids, but the diet is complicated by the fact that I can’t have any sugar as this causes “Dumping Syndrome.” It is as pleasant as it sounds. Essentially, when you eat a meal high in sugars it enters your small intestine and since the small intestine is not used to seeing sugar like this it says, “Hey what the….!” Because the food is too sugary and too concentrated, the small intestine dumps a bunch of water in the small bowel to try to dilute the food. While this sounds benign, what the person feels is not. You feel very light headed with a fast heart rate and all the freshly added water has to come out somehow, so this usually results in a rapid onset of crampy diarrhea. This happened to me a couple of times, so to say I am a little gun shy of foods with sugar is a bit of an understatement.
At first I was super excited about the Phase II diet because it provided me many more options than the clear liquid diet did. However, after a few days of a baby food consistency diet, it gets a bit boring. The other thing I did’nt account for was the fact that since I no longer have a stomach, I don’t feel hungry. Without that cue to tell me to eat, I would get really behind on getting my calories. One minute I would be fine and then next I would be having the signs of hypoglycemia with a fast heart rate, sweating, and irritability. When a person who has a stomach gets hungry, or has a low blood sugar, they eat a bunch of food and feel better. The problem for us stomach-less people, is that we can’t take in more than 1 cup of pureed food at a time. So for me to catch up and get rid of the hypoglycemic feeling, it would take a few hours. What I learned is that the minute I wake up I have to eat and then I have to eat every 2-3 hours for the rest of the day when I’m awake. It has been a challenge because there are only so many purred food options that are high in protein, low in carbs with very minimal sugar content. Welcome to ‘Merica. The land of the over sweetened diet.
Some days I was lucky if I was getting 600 calories a day. On a good day I would get 800. As you can imagine I have lost a fair amount of weight in the process. I knew this would happened, but didn’t expect it to happen the way it has been happening, as most of the weight loss seems to be mostly muscle mass with some fat loss. I don’t have a scale here at the “vacation” rental, but my guess is that I have lost between 5-10 lbs, at a minimum, which is a lot for me. My previously snug pants hang loosely on me, as do my shirts. I have to cinch my belt to the last hole which has never happened before, and at times, even that is a little loose. I was never a very well endowed when it came to my bra size either, but what little I have is even less than before with my previously well fitting cups, now with gapping areas of booblessness. Why is it when women loose weight the boobs always go, but the muffin top manages to linger around? I was hoping with all of this weight loss the one good thing that would come from it is I could say goodbye to the muffin, but a small part of it seems to want to stay indefinitely. With all this weight loss, I am super thankful I had gained those 5 extra pounds before the operation, as well as thankful I had been working out and had the extra muscle mass to lose, but I am sad I now have wimpy quads and no butt to speak of.
The last few days have been better and as I have kept myself on a food eating schedule, I have been getting upwards of 1300 calories per day and have increased my protein intact dramatically. This has definitely helped my exercise tolerance, but I am still fatigued easily. Just a quick jaunt around the mall yesterday wiped me out.
I am really looking forward to Phase III of the diet plan which I can start once my doctor clears me, although technically I have started it a little. In this diet, I will actually be able to chew food. I really miss that. Like a lot. It would be great to eat a soup that looks like a soup with broth and bits rather than blending it and eating some generic looking amorphous monochromatic mush. With this new phase of my diet I’ll be able to have soft proteins, such as soft scrambled eggs or tofu. I can also eat veggies as long as they are overcooked and soft. Over the next few weeks I will build on what I can eat as my body tolerates it and hopefully at the end, I will be able to eat a regular diet. Here’s to hoping.