I realized I hadn’t spoken to what vitamins/supplements I’ve taken post surgery. Well, here goes…. Generally, I think it’s best to get nutrition from food, but I think multivitamins fill gaps. And since my focus now is on calories, not necessarily quality, it must be more critical now. On the flip side, I’ve also heard it just makes our pee expensive.

I will preface this post with a link to a very disturbing article about the unregulated supplements industry (I don’t think this is as relevant to multivitamins, but the article was disturbing). My takeaway is if you’re in the US, make sure it says ‘FDA approved’. The rest is unregulated. http://www.usatoday.com/story/news/nation/2013/07/25/bodybuilding-supplement-designer-matt-cahill-usa-today-investigation/2568815/

So before my gastrectomy, my monster multivitamin pill would wrench my gut if I didn’t take it with a meal. So, I’d slowly grown into the habit of just taking 2 of my kids’ gummy vitamins. Seems to work for me now. And initially the thought of a big pill to swallow with new gastric plumbing was quite horrifying, so it was better than nothing.

So I was using my protein shake to ensure my vitamin intake beyond the gummies. I figured it has an array of vitamins in it as well to top up what I’m missing, but of all the things I eat, I’ve recently noticed I feel cruddy/slightly nauseous afterwards. I might try some other brands and see how it goes. I’ll post about that later what I figure out. Now that I haven’t done protein shakes the past few days, I worry I might fall short on protein or vitamins. Hopefully another shake will agree. And with time, I can do the bigger pills. (If you’re wondering, I can get down tablet ibuprofen and other small tablet OTC medicines ok. I just have to be careful it stays down because I’m cheap and don’t want to waste them. I was told to just stay away from the extended release capsules because our meds don’t stop in the stomach so we don’t need the delay.)

Onto B12 specifically… My doctors said my cells had enough B12 stores since I’m healthy to last 6 months. I’m the theory of let’s get it started now because I need my energy. I’ve started taking “sublingual B12 drops”. (read: under the tongue) Actually tastes good (far better than that horrible thrush medicine). Though it is red, so brush teeth afterwards. If you haven’t read up on gastrectomies and wonder why am I talking just about B12… B12 is the only vitamin that is solely absorbed in your stomach. So you have 3 choices post op for B12 supplementation. Drops are OTC, the cheapest option & no shots! Hooray!!

Vitamin D and Calcium… We asked what the long-term health concerns were about not having a stomach. Our surgeon quickly responded long-term worries were just about having enough Vitamin D and calcium. Just like concerns for old age. Ugh!

Ok, those are my feelings on vitamins. Have a good evening.

Just keep trying. That’s the motto today. It is going well for me, and I want that to be an inspiration for others.

Tonight, kids have a babysitter and we’re off to see Wicked. Decided to try Olive Garden for dinner beforehand. I’m admittedly unmotivated about the thought of food, so I told the hubbie to pick and laughed saying he would get more enjoyment out of the whole thing so he should choose. Cue remark, “Oh great. Is this what eating out with you will be like for the rest of our lives?” I had a smart remark back of course. But we went out to eat and quite enjoyed it. Was scared I didn’t want to puke in public and chewed so slowly. Patience paid off. I slowly ate & nothing came back up. I think people probably think I have an eating disorder now when they wait on me. Lol

Here’s how it went.

Short wait, so got a Blue Moon. I loved wheat beers before and still love them now.

Then my first venture at lettuce! It was a tiny portion but so tasty in all that dressing!

Had one bruschetta with 1-2 tbsp spinach artichoke dip. Then I got my half toasted beef ravioli, half mushroom ravioli with marinara (They were so kind to make up my meal as differently as I requested vs the actual menu.). They were both so yummy, though toasty takes more chewing. With all that food, I was able to eat 2 mushroom raviolis and 1 toasty beef. Ate a 3rd mushroom ravioli in the car to the theater because I like improvisation & that’s how I roll! I figure why not in a city that at one time had the highest number of restaurants per capita in the states!

And here was the rainbow on the way in town…


And final photo, I promise. Here we are at intermission!! Much needed fun night out!

So, my life without a stomach might be frustrating sometimes, but it’s also so wonderful!

Have a great night!

This is what I now find daunting. It’ll take some time, but lots of protein and calories. Fries usually don’t happen. I’ve found the sandwich easier than nuggets. Dry chicken is so hard to chew up.

I did finish this sandwich, but know that the first half I ate in the time other families came and inhaled their food and left. Good thing my kids playing at the playground gives me time to finish.

I refrigerated the rest, took a nap and ate the second half when I woke up. Yup, kinda takes forever. The lady at Chick-fil-a asked to throw away my trash bag, and I had to tell her that was all the leftover food to take home. I have as much food waste now as my kiddos! Yikes!

So last night, in a feeble attempt to get in my final calories for the day, I was able to put down an entire cup of Cheerios with a cup of whole milk. Afterwards, I was surprised how quickly I was able to eat it all…the whole bowl in one sitting without soggy Cheerios. Afterwards, my mouth starts watering like just before you throw up. I was sitting there hoping it wouldn’t come up because that kind of negates all my hard work eating that bowl! Luckily it passed and my work wasn’t lost.

I find it hardest to eat in the morning. The simple answer might be that I’m not a morning person. Who knows… By the time I get myself and the kiddos ready, I’ve lost an hour of time. I try to use that time for water, but who knows. The morning is also that moment of trepidation before I step on the scale….did I lose weight yesterday? If I were to lose as many pounds as some folks I’ve talked to, I’d end up below 100. That would just be bad… Let’s call that my motivation.

Circle back to this evening. I ate a lot of peanuts today. 1 oz = 170 calories. Small volume, high calories. Maybe that extra protein kick helped. I certainly feel weak/crappy when I haven’t gotten enough food in. I played with the kids, then went biking with them in the trailer. They weigh a lot, so it was quite the effort. Just hope that doesn’t eat into my calories too bad, but it felt great to get the leg muscles crunching and the cardio up. I can’t chug water, but I made a valiant attempt afterwards. I also felt great afterwards; reminds me exactly why I’m a runner! Spent the rest of tonight eating and drinking water.

I do have some negative moments. Like in the cafe this weekend, knowing my body is starving and trying really hard to eat a good quantity. It’s taking all my energy, and beside me is a big lady inhaling a massive plateful of meat and sides. That was my “Really? Why me?” moment.

Shaking the thought off. There’s a reason for this. It’s actually not that bad. But I think everyone post gastrectomy must have their moments. I think you just have to keep trying over and over again with every meal and not let it get you down. I might have more failures now with food not staying down, but as times moves on, those failures should be fewer and fewer.

Have a good evening.

Eat your meals slow & steady. That’s how it’s going to get all my calories in. It means I eat all day long. And my baby analogy continues on…just like when caring for a baby, post-gastrectomy means a lot of cold meals (My babies hung out with Murphy because they’d only cry, poop or wake up when my food was piping hot and ready to eat.)

Food/drinks I’ve done ok with lately:
Ice cream
Soda
Beer

Yay!! Normal is coming around very quickly for my very speedy recovery. And my energy levels are getting better and better all the time. The good thing for my kids is that my body seems to be as tired as theirs. I guess they’re growing and I’m repairing. It helps me get respect for how tired little kids can get.

On a side note, the shooting pains in my side from I’m guessing where my feeding tube used to be is really annoying. I’m not a happy person when I’m in pain. Luckily it just seems to come and go in random spurts. It’s not that often, but when something hurts, it’s easy to focus on it.

Also, my spitting back up of my food still happens usually with the first bite when I don’t chew well enough. Funny to say sometimes when I initially sit down for a meal (not snacks), I kind of forget I don’t have a stomach. Then my body reminds me. Ironically I do better eating on the go. If I’m driving and eating, I must eat slower and chew more thoroughly.

I must say I’ve been encouraged by the comments I’ve gotten from people about to have to go through this. It reaffirms I need to keep up this blog with details of my experience for others. I give a lot of details about what I go through for their sake.

But it’s just an extra focus in my life right now. Life is getting back to normal. Maybe this was the hurdle in life I was supposed to go through. I can have my moments watching people inhale their food while I slowly work and work at it. They don’t know I don’t have a stomach and I sometimes wonder if they just think I have some kind of eating disorder. Other than my handful of bitter moments, life is good and I’m so blessed and happy.

My blog is a bit backwards. As I’ve been posting on a helpful Facebook group called “Support Group for Partial & Total Gastrectomy Patients” (very helpful resource), I realized that I haven’t discussed why getting your entire stomach removed is the correct treatment plan for someone with the CDH1 mutation.

CDH1 also puts you at a 40% increased risk for lobular breast cancer, but I’m not planning on a double mastectomy. Why, you may ask? Because present screening for lobular breast cancer (alternating MRIs with mammograms every 6 months) can catch the cancer in time. But for stomach cancer (linitisplastica), current medicine’s screening doesn’t work. This is a big statement, so let me explain how I got to that belief, along with my team of doctors.

My dad and his cousin both died of stomach cancer. After seeing this, my aunt had annual endoscopy screenings. 4-6 months before she was diagnosed with stage 3 stomach cancer, she had an endoscopy screen come back clear.

I met with Dr. L, a gastroenterologist, prior to my surgery. He said, “I used to think a total gastrectomy was draconian. I have been disproved.” He used to think increased endoscopy screenings would catch the cancer early enough. But every CDH1 mutation patient who screened negative had a stomach pathology positive for cancer post surgery. Dr. L performed 100 biopsies during my endoscopy and found nothing; my post-surgery stomach pathology came back with 4 cancer spots. And as you read, after a stage 3+ cancer diagnosis the average survival rate to 5 years is <25%. My dad, aunt & cousin all survived about 3 years post diagnosis. When I walked into my genetic counseling appointment, I made it clear that if I was positive for the gene, I wanted to pursue the total gastrectomy because current screening is ineffective. I was not doubted or questioned; in fact, I was further validated. At MD Anderson, they draw patients from far away for their high level of experience. These doctors have seen time and time again that today's available screening technology just doesn't work. We asked where the research is today, and they said some work is being one to use a kind of spray dye detection. My prayers are that through continued support of No Stomach for Cancer, screening research will progress and be available. With the average onset of this cancer being 31-38, I'm not waiting. I'll take what available medicine is available to me now. So, why can't doctors detect it? The keyword is diffuse. When you think of most other cancers, doctors can usually find a polyp or tumor or something red and raised...I'm no doctor, but basically you can see something. When the cancer is diffuse throughout the stomach lining, by the time you see something, the cancer has already progressed to stage 3 or stage 4. At this point, it could have metastasized to the liver or somewhere else that might make it too late. And since the symptoms of stomach cancer are similar to acid reflux or are easily attributed to a bad diet, by the time most people get checked out, it could also be too late. That is how I arrived at my conclusion. I hope this discussion can help others with this difficult decision. And for me, if I couldn't effectively argue my reasoning to disbelievers, how could I go into this surgery, no matter how scared I was?

Today, I said a fond farewell to my feeding tube. According to the doctors, I’d only lost 1 lb since I was last in and that’s been with almost a week off my feeding tube. But the biggest component to the decision was the results of my blood test. My cellular level protein stores (cannot remember the fancy medical word right now) were at a high enough level. Their entire emphasis has been on protein since that’s the main rebuilding block your body uses to heal. Hooray for protein shakes and greek yogurt!

The nutritionist said I’m doing awesome. To get in ~2000 calories a day, it takes a lot of effort. It doesn’t look like much when I read through my food diary though. When every meal feels like you just ate a giant Thanksgiving feast, it feels like so much effort to graze all day long! I mentioned that to the nutritionist and she said that constant fullness will subside gradually over time as your intestine stretches in order to become my new reservoir for food. Other patients further down the road had mentioned around the 1 year mark, a lot of people can get down to 4 meals a day.

I also wanted to post a photo. This one was taken a little after 3 weeks post op of me and my husband at a friend’s wedding. I took a good nap to prepare for it and doing something fun, happy & normal was just what I needed. This was the first & last dress I’ll ever have to buy with the criteria that it needs to hide my feeding tube. lol

I think the bad days are to teach you some things. Yesterday I was reminded to check nutritinonal info for restaurants. Today was great though…no hidden sugars!

I had lost a lb or 2 the other day since dropping the feeding tube and have been consuming the max of what my new digestive system can handle to try to stabilize my weight. It seems to work as long as I don’t go for a run yet! I’m consuming right at 2000 calories a day as my goal. My body certainly metabolizes that much a day because when I do 1500, my weight drops. And according to myfitnesspal app, one day I did 2700 calories and barely ticked up in weight.

Also, it’s good to mention I’m almost 6-weeks post gastrectomy and recently realized I feel better able to take bigger “gulps” of my drinks, rather then taking small sips. But while my body builds its new reservoir to replace my stomach, the space fills quickly. A buzz word that comes to mind is having to consume my food and water “ratably” thoughout the day. Other folks over a year post op say they can just about do 3 round meals a day. I’ll see how it goes for me.

I did some roasted chicken today and dipped it in some mashed potatoes and cream gravy. It’s as though the mashed potatoes and gravy helps the chicken go down. It does take a long time to chew chicken, but it’s such good protein and I really want it in my diet.

And I’m able to eat a whole large banana during the day, but I break it up into two halves. This seems to prevent any sugar overload.

Also to note, I wanted to get all my doctor’s visits in before I went back to work. (unrelated to gastrectomy). As a precursor to one visit, I had to pass a computerized pulmonary screen where you’re supposed to over exert your lungs on the exhale. I failed miserably; they’re crediting it to my recent surgery. Guess I’ll get to go redo that appointment later!

Have a good night!