How to Choose a Surgeon for a Total Gastrectomy

The last month, I’ve been able to discuss CDH1 and/or the total gastrectomy procedure with several people who are in the manic “shock” phase of a CDH1 diagnosis. I’ve had a lot of time to reflect on both my recovery and the wide array of recovery complications for other individuals. As such, it seemed prudent to give my opinion for how to choose a surgeon. When all is said and done, you’ve got one shot to get the surgery done the right way.

My surgeon was Dr. Paul Mansfield at MD Anderson in Houston, TX. He is fabulous, and I can’t thank him enough. He performed my brother’s surgery, as well as 5 other CDH1ers I’ve met. None of us have had major complications.

Below is how I group what you should care about in choosing a surgeon.

  • How many gastrectomies has your potential surgeon performed?
    • You want someone who knows what they’re doing.
  • What is your leakage rate?
    • The anastomosis is the fancy medical term for the connection of your esophagus to your small intestines. This is the most critical element of your surgery that will impact your post-gastrectomy life. You want the food in your esophagus to stay inside the esophagus and the small intestines.
  • What technique do you use for the anastomosis?
    • Stay far aware from any surgeon who staples this connection. Staples lead to a higher incidence of strictures. Strictures are when the anastomosis contracts and you can’t get food through. When this happens, your only option to address the problem is to go through a series of dilations to get the stricture opened back up.
    • To be clear, a stricture could happen with a hand-sewn anastomosis, but it greatly reduces the incidence of stricture. Your job is to minimize all likelihood of the complication with the best practice.
    • I haven’t had any strictures, and Mansfield specifically discussed performing the anastomosis with hand stitching. This is why my surgery was performed half laproscopically and half open. To minimize risks, the surgery starts laproscopically. Then they cut the vertical incision in order to perform the anastosmosis by hand.
    • How are you confident that your anastomosis is sealed and done right? So apparently the human digestive system can identify leaks the same way you identify leaks in a car engine. They submerge the connection in water and put a puff of air through your esophagus. If they see air bubbles, they have a problem.
    • A lot of other bloggers mentioned a barium swallow test before they were allowed to start eating. I didn’t do one. When I asked Mansfield, he said the possibility is there for both false positive and false negative results. As such, the surgeon needs to be confident in their connection. When I asked how, he explained the water submerge technique.
  • Feeding Tube – You Need One
    • I’m a huge fan of the feeding tube. Given my pre-surgery weight, I didn’t have a lot of extra weight to lose. But even if I was overweight, I would be sure to have the surgeon put in the feeding tube. It’s a backup plan. If your recovery has complications, it’s not like you can easily go in for an additional procedure to put the feeding tube in after the fact. You want the feeding tube in place while you’re on the table. If you hate the feeding tube, great. Just don’t use it. Prove that your oral intake is good enough to have controlled weight loss.
    • You’ll be going in for major abdominal surgery. At the very moment your body needs full nutrition in order to heal and repair itself is not the right time to malnourish your body.
    • Uncontrolled substantial weight loss creates a whole other set of additional complications above and beyond recovering and adjusting to your new digestive plumbing. You’ll have plenty of time post TG to lose weight if you want because remember that you don’t feel hungry anymore.
  • The Surgeon
    • Make sure you like the person. My doctor was not only compassionate and caring, but also experienced, knowledgeable and logical. He provided sound medical test results that supported his rationale for every technique he used for my surgery.
  • Location
    • Don’t have your surgery at a small local hospital. Go to a major hospital with expertise. But that being said, I can’t believe there is only one doctor in the United States capable and experienced. If you’re near Houston, by all means, call up Dr. Mansfield. If not, there is probably one at a whatever great major hospital is near you. Just do your research, ask the questions and compare. It’s worth your time.

The only other surgery-related concerns I would have before a total gastrectomy is about your own health. If you can get yourself into great shape before surgery while eating up a storm to pack a few pounds, do it. Go to the gym 6 days a week leading up to surgery, whatever you have to do. I can’t tell you why my recovery has gone so well, but I won’t discredit the unknown benefits of exercise. For me, I thank my crazy running habit for my amazing recovery.

Hope this is helpful.

And of course no new blog post is complete without a picture. Post gastrectomy life should be a  constant attempt to live life to its fullest. If a brush with cancer and a major internal plumbing change doesn’t force you to focus your life priorities, I’m not sure what will!! For me, I love music, so I make sure to always get to some good concerts. This past month, I was able to go to Mumford & Sons. They put on an amazing concert!! Here we are getting into the concert venue for our date night! It was a blast! Kyle is my rock and greatest supporter everyday, and I am so blessed to live my life with him.
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A Stomachless Work Lunch

I wanted to add a short post to elaborate on all the goofy comments you must be prepared for post gastrectomy.

For lunch, I met a coworker who was aware of my “stomachless status” at a local Mexican food restaurant. I ordered one crispy taco lunch portion which also came with rice and beans. We were having a great discussion when the food arrived. I looked over to discover that the “single” crispy taco was the size of half of a soccer ball. It was an insanely large portion. (But that’s pretty typical at restaurants, so no surprise there…)

As per usual, when my coworker was done, I took my cue that I should be finished by now and asked for my usual to-go box. At this point, I didn’t think much of what had happened. I actually thought, “Wow, I did really good. I ate half the taco, half the beans and rice and even managed to finish by drinking some of the ice water.”

When the waiter came with his to-go box, he caught me off-guard by asking, “Was there something wrong with your meal?” To which I replied, “Oh no, I just eat lunch part A and lunch part B.” He simply responded with “Oh… you’re one of those 6 meals a day people.” I thought and said, “Why yes I am.”

So, if you don’t have a stomach, be prepared for the random comments and what you plan to respond with. On a side note, I am swimming in leftovers that I need to eat. So, you should be prepared for that too if you don’t have a stomach. 🙂

A Beautiful Race

Sunday, Jan 17, the city of Houston hosted the Chevron Houston Full Marathon and the Aramco Half Marathon. It was a beautiful day with perfect running weather, no breeze, 40s-50s during the race, and a clear blue sky once the sun rose.Half Marathon marne

I was yet again blessed to participate in the half marathon. I was extremely disappointed with my race results last year because of my iron deficiency. This year I am in full health. But as I stood in Corral B unable to start in Corral A with my friends, a little part of me was kind of bummed out. Luckily the pre-race excitement was the main emotion I felt as I stood there just smiling about the day.

So, God always has a plan. I started talking to the fellow runner randomly beside me in the corral. His name is Andy, and I learned he was about to race in his first ever half marathon after having open heart surgery within the last year to repair a 100% blocked vein to his heart, commonly referred to as the “widow maker” since most people don’t survive the blockage. He had trained for the half marathon with his teenage daughter who is a cross country runner. But the morning of the race, she was in a wheelchair because they recently discovered she has something called POTS (Postural orthostatic tachycardia syndrome)

My jaw was hanging open just listening to his story. Starting, as well as racing this half marathon, clearly was a giant milestone in his life. These races are more than just feet pounding the pavement. For me, as well as so many others, the race is a line in the sand or a triumph we’ve accomplished. I didn’t race with him for more than a few miles but was able to look up his results afterwards. He crushed it exactly the way he wanted to. The human capacity to overcome obstacles and soar with even more appreciation for life is amazing.

One of the big reasons I started this blog in the first place was during the hours of searching online for post-gastrectomy capabilities. I couldn’t find any resources sharing about their abilities in athletic adventures. I went into my surgery following a marathon PR since I wasn’t sure if my running career was over or not. This year, I feel like screaming to the world, “I’m back!!!!!!!!!!”. Once I sorted out what vitamin supplementation I need to do and packed on quite a few extra pounds, I was able to run just as well as I have run with a stomach.

My husband and children waited for me near the finish line. They also met a man whose young daughter had just survived ovarian cancer. They felt blessed just to share stories with one another and what this race meant for the people overcoming their personal obstacle. He took the photos I posted as I was squinting to see and wave at my ever-supporting, wonderful family.

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I ran my half marathon in 1:39:15. This was only a minute off from my best half marathon time (with a stomach). My running days are far from over, stomach or not.

An Instant Remedy for Bile Reflux…Soda!!

During a family camping excursion, I unintentionally discovered the most effective and almost instantaneous remedy to get rid of bile reflux!!  I have been getting bile reflux quite often, the kind that wakes me up in the middle of the night. And quite frankly, I’ve lost quite a bit of sleep because of it. Once I get the reflux, I’m not able to sleep well afterwards because the burning in my throat keeps me awake.

During camping, the only drink we had left inside our tent was, ironically enough, diet Pepsi. I knew I would have an issue before we went to sleep because I’d eaten s’mores (graham cracker, chocolate and marshmallow) and pretty soon after, we went to bed. We forgot to pack pillows, so I was basically laying completely flat on the ground. Both of these meant I would wake before sunrise to that burning bile feeling in my throat. So, at 5:00 AM or so, I was woken up by that exact feeling and tried drinking the only beverage I had available.

To my amazement, it turns out diet Pepsi completely got rid of the bile reflux, and it happened in approximately 5 minutes or less. Since then, I’ve done a little trial and error at home with this. If I wake up with bile reflux, I go and grab a Coke Zero (my personal favorite) and I take 5-6 giant gulps. Somehow the soda shoves the “knot feeling” down and gets rid of the burning feeling.

I’ve been so flabbergasted by this discovery, I just had to share it as its own unique blog post. I hope it will help those of you who also have this issue. On a side note, my stomachless brother does not have bile reflux, so he’s never had to try this.

Hope that helps! Have a good night.

A Day in the Life of the Stomachless Runner

You’d think that 2 years out, there’d be nothing to blog about. But everyday is new and different. Today I was reflecting on my day…all in all quite a pleasant day, but with quite a bit of gastric discomfort, mostly a result of my own poor food choices.

It all started out in the morning. I managed to keep the motivation to get up early and get out the door for a run this morning! Hooray! I’m in a life phase right now where my running needs to happen long before normal people wake up, otherwise it doesn’t happen or gets in the way life and family. And since I’m usually tired, I sleep as long as possible, fall out of bed, throw on some running clothes and get out the door. Of course, one of the dangers of running first thing in the morning is the lack of bathroom stops that are actually open! (I know many runners who have stomachs who have the same dilemma, so maybe this is purely a runner’s issue…)

The night before, I did not eat well. I had a piece of fried chicken with a scoop of potato salad and some fruit. I wasn’t at my house, and my water cup was cleaned up by the time I was ready to drink again. So when I got home later, I tried to catch up on my thirst, but it was a bit too late. When I woke up in the morning I was clearly dehydrated, so much so that I went ahead and drank a half bottle of water quickly. (I know better before an early morning run…)

So I happily get my legs warmed up with the first mile and then my gut just kind of wrenches. It’s the kind of discomfort that actually makes me stop to walk because it’s so uncomfortable. I made the decision to go ahead and turn around and book it home. Good plan!

Then I got to drink some water, felt better and went on with my day. I’ve been a bit obsessed with coffee brewed via a French press. I do believe it might be the best cup of coffee ever! And I’m pretty sure that since cutting my stomach out of my body, I am more obsessed with good, quality foods when I have time and control over it. So my coffee with cream and stevia was unbelievable as usual.

I ate a sausage, egg & cheese kolache at work. Then late morning, I ate some leftover rotisserie chicken and a banana with peanut butter. Late afternoon, I ate a mini turkey and cheese sandwich on a bread roll. I prefer to just eat at my desk all day long, since it’s easier on me to just work and eat at the same time. It’s a stomachless person’s dream.

Here’s a few tips and tricks I’ve learned (and need to remember for myself):

  1. Eat oatmeal before bed, but not too much.
    1. It seems to help ward off middle-of-the-night bile and slow your digestive track for your early morning run
  2. Don’t drink a lot of water before bed.
    1. This seems to be the main culprit behind the bile that wakes me while sleeping
  3. Be hydrated the night before so you don’t have to drink water in the morning before a run.
    1. Your digestion seems to wake up after you wake up
    2. Running seems to wake up digestion even more
    3. and drinking water seems to get it moving even faster
    4. The above is the perfect trifecta for a trip to the restroom
  4. Exercise
    1. I feel better when I’ve gotten exercise 3-5x per week.
      1. This might just start out as a simple walk early post total gastrectomy. You can get back to what you want further out from surgery
  5. Blood sugar
    1. Your stomach was a buffer between what you put in your mouth and your digestive tract. Once you say goodbye to your stomach, ratably supplying your body with food is up to you to manage.
      1. Your blood sugar can drop low if you haven’t snacked, much the same way your blood sugar can spike when you eat too much sugar.
    2. Always keep a protein-packed snack somewhere nearby for when your blood sugar unexpectedly drops. When I notice my hands start shaking and feel ‘off’, I immediately eat protein. I tell my kids, “Mommy has to eat right now. I’ll be with you in a few minutes.”
  6. Start your day with protein
    1. If possible, eat eggs for breakfast
      1. If you eat out for breakfast, watch out for the “fake egg” places that serve what they call eggs but have so much grease it surprises you
      2. I had a lot of trouble keeping down scrambled eggs early on, but now they are a “go-to” food for me.
  7. When eating meals with others, use context clues for how long it’s “supposed” to take normal people to eat
    1. At this time, just get a to-go box and finish the rest 30min to an hour later
  8. When eating out, prioritize what food on the plate you eat first
    1. Protein first
    2. Fruits and veggies
    3. Simple  carbs last (typically become the leftovers you take home)
  9. The further out from surgery, the less you need to snack, but…
    1. Big meals can be uncomfortable
    2. You can have spikes in blood sugar
      1. Up – when your body is digesting that giant mass of food
      2. Down – before you eat again
  10. Be positive
    1. When I run marathons, I’ve realized (to quite a big extent), your brain tells your body what it can do. Keep this spirit in post-gastrectomy life. Everyday won’t be rainbows and flowers, but push through and remember the big picture. Mind over matter.
    2. Go and see the world. Travel now. Love on your family. If you want to see or do something, plan it and do it. No more indecision. Don’t put it off any longer.
  11. If you drink water near a meal, water before a meal seems easier than water after a meal.
    1. It’s almost as though your digestive tract doesn’t want you to accelerate the food through your gut with water.

Summary list of go-to foods today

  • Egg
  • Pistachios, almonds, peanuts
  • Salmon
  • Cheese slice
  • Peanut Butter
I hope this list and these thoughts help you. Small, frequent healthy meals are best for feeling good. I still enjoy ice cream and sweets without too many issues. I just watch my portion size and it seems to go ok. I can tell when it’s “almost too much”.
Here are a few photos from my trip with the family this summer to Alaska. Such a blessing to be able to share such a beautiful place together. Alaska was designed to remind us just how big and beautiful the world is.
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DSC_0287 20150720_190352127_iOSHave a great day! Can’t believe it’s been almost 2.5 years since my gastrectomy!!

Vitamin supplementation Plan – 2 years Post Total Gastrectomy

From what I’ve read and been told, after 6 months, most of your vitamin stores from before a total gastrectomy are assumedly gone. So, it is safe to say that at 2 years post-gastrectomy, I am fully dependent upon diet and supplements to maintain my health.

I just wanted to share with you what I currently am using as a reference. Check with your doctor for your plan. I’ve certainly discovered that everyone’s body reacts and heals differently from this surgery!

Since I have struggled with some major iron deficiency, I found that Centrum chewables is the only chewable multivitamin that actually contains iron. So, I take that one every morning and evening. My theory with the chewable vitamins is that the more I can break it down before it hits my system, the better for absorption.

 

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Then, here is the type of ferrous sulfate (iron) supplement I take. It’s NatureMade because that’s what’s available at my local grocery store. I make sure I get uncoated tablets for better absorption by my gut.

I know that too much iron is a concern, but since I was so deficient, taking this twice a day isn’t an issue yet. I know my iron absorption is reduced due to my total gastrectomy, and I was so extremely anemic that I haven’t reached a tipping point of too much iron. When you get too much iron, you get constipated. I can still poop, so it seems ok so far. To confirm my success with this, I am awaiting an August well visit with my doctors to include a vitamin and mineral screen.

On a side note, I suppose you could take the liquid iron supplement, but that just seems like it’d taste extra disgusting. I couldn’t even stand the smell when I gave it to my children when they were infants.

And since iron absorption is better done with vitamin C, I chew some vitamin C before taking that iron pill supplement.

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Last but not least is Vitamin B12. I chose to take the sublingual drops (under the tongue) because I didn’t want monthly shots. I’ve read some folks debating if sublingual drops are effective. With daily sublingual drops taken since my surgery, my B12 is actually high above the typical range. So, the absorption must be effective. I now am balancing to take the drops every other day so that I’m in the healthy range. At this two seconds, I’m taking the B complex sublingual drops; but I’ve also see just B12 available at the store. I’m not sure if the B complex is necessary, but I thought I’d try it.

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Stay healthy my friends.

Celebrating two years post total gastrectomy!!

Today marks the two year anniversary of my total prophylactic gastrectomy. It’s been a journey, I think about food differently now, but I’m so happy with where I am today. I sat down for lunch on Monday of this week with a table full of people completely unaware of my gastric reconfiguration. I remember just smiling thinking how far I’ve come. Two years ago, I’d had my stomach removed and couldn’t eat more than 500 calories a day. Now, I can eat with folks who just think “Oh, she has really good self-control around her portion size at meals.” Oh, little do they know!!

So what do you do on the weekend two years post-gastrectomy? Pretty much whatever you want. Hopefully the journey to get here serves as a reminder to savor the moments and love life. We did just that today! The weather is hot and the pools are warm, so you have to soak up the sun. Early in the morning we played a little top golf. After that, we took a short break at home before hitting the neighborhood pools: my son really loves the diving board and then the other pool has a beach as well! This basically meant we spent 4 hours out in the hot sun swimming and enjoying family time together. And tonight we got to attend a friend’s birthday party. Adults got to chat; kids got to play. It was great!

What did I eat today?
Started out with a tortilla with peanut butter, also a coffee with cream
Then some beef stew
Had a grilled cheese at the pool, along with some watermelon
Started getting a little shaky given all the energy output swimming, so I ate some pirate booty and a slice of cheese in the afternoon.
In true Texas form, the birthday dinner had BBQ. So I enjoyed some turkey and sausage, along with some potato salad.
Over the course of the evening, I was able to have a slice of cake and peanut butter M&Ms. I also had chips and hummus.
All that, along with some drinks.

When I type up a list of all the food I shoveled into my body today, I have to say it was pretty awesome. Good thing I’ve kept up my running habit because otherwise I’d probably be gaining a lot of weight at this pace. It’s crazy to compare my food log today with what it looked like 2 years ago. Thank God for the feeding tube that helped me hold my weight the first 7 weeks after surgery!! The pair of pants I bought post-gastrectomy when my weight was at its lowest is now too small for me. Nice to be stomachless and have pair of pants that’s too small on you!

Over the past two years, as I’ve shared my story with others, I’ve been amazed at just how many people are impacted either by stomach cancer or stomach/gastric issues. It’s amazing how many people have a relative who has passed away from or battled with stomach cancer. Others have undiagnosed stomach issues that they’re going from doctor to doctor about. You can’t be part of this community and not recognize that you are your own best advocate.

I call this #stomachlessrunner …

Keep it up my stomachless friends!

But You Don’t Look Like You Had Cancer

Blogging is a great way to reflect on where I’ve been, where I’m at and where I’m going.

At this phase in recovery, a lot of people around me in life don’t realize I don’t have a stomach. And when I do mention it, I feel like I’m weird for even having said anything. Lately I’ve been trying to figure out how to explain my circumstance when necessary in the ‘condensed elevator speech’ version that doesn’t make me or them feel so awkward.

So a few weeks ago, I was lucky to be able to attend No Stomach for Cancer’s Spotlight on Gastric Cancer event in Philadelphia with Dr. Parry Guilford as the keynote speaker. It was an awesome conference with great insight into the future of the medicine for CDH1ers. I learned about a possible future cancer prevention pill which would attack mutated e-cadherin. This means that in 15 years, CDH1 mutation patients could keep their stomachs and live!!

I got to meet my fellow stomachless blogger Rachel and her energetic stomachless mom!!
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On the way, a lot of people from Houston were flying to Philadelphia for the larger conference hosted by the American Cancer Society. I’d bet most people heading there were researchers or worked for the pharmaceutical companies.

When a man on the plane asked me a simple question, here’s how the conversation went:

Him: “Oh, why are you going to Philadelphia?”
Me: “I’m going to a gastric cancer conference.”
Him: “Oh, are you in research?”
Me: “No.”
Him: “Oh, then you’re a doctor!”
Me: “No, actually I’m a patient.”
Him: Look of astonishment, turning to feeling a bit awkward for having asked the question.

I am fairly young. I consider myself to look pretty healthy, somewhat athletic, and maybe too skinny. So when people see me, they don’t think I look like someone who had cancer or who is missing a stomach. How do you explain your circumstance to people who feel your physical appearance is incongruent with what you’re telling them?

Here’s conversation two, as I was picking up my young son from after-school care:

Son (while nonchalantly playing with a toy): “Yeah, my mommy doesn’t have a stomach. Yeah, she had it removed so she could have me.”
Older girl classmate: Look of absolute confusion. Looks toward the teacher for an explanation.
Teacher: Look of even more confusion. Looks at me, looks confused back at the confused girl, looks at my son who thinks everyone knows you can live without a stomach.
Me: Awkward laugh.. “Yes, he’s telling you the right thing. I don’t have a stomach. I had my stomach removed. It wasn’t so I could have kids though”
Teacher: Still confused. “What?”
Some silence
Me: “It was because of cancer.”

I don’t feel like I had cancer. My gastrectomy got all my cancer out before it became a problem. It was curative with no chemotherapy. I don’t feel like I can “claim” I had cancer, but quite frankly it seems to be the simplest explanation that most people can get their head around. And everyone knows that cancer sucks.

And the conversation I have at work every week or so. Most stomachless folks will smile as they read this because I’m sure they can relate.
….
person: “Can I come to your desk to discuss XYZ topic?”
me: “Sure thing. I’m here.”
person (sees remainder of food I need to finish at some point): “Oh, I’m so sorry. You’re eating. I can come back.”
me: “Oh no!! Just ignore the food. I kind of just eat all day. I promise it’s not a problem.”

Maybe I’ll get better at explaining my circumstance as time goes on, but for now it’s just a bit strange when it comes up.

Onto regular life, as I continue to supplement iron multiple times a day (with vitamin C to increase absorption), my strength continues to grow. I’m able now to work out 4 days a week, and I think I’m holding to gaining weight. (Yes, my scale actually broke, and I haven’t replaced it.) The current routine I’m trying out is an attempt to include my love of running with some more strength classes. I run 5-6 miles 2x a week, then take a bodypump class and a boot camp class (which is more like athletic conditioning). I can tell I’m gaining muscle strength; I don’t have a trainer to tell me what I’m accomplishing in body composition, but I can tell. And during my workouts, I can tell that my strength is growing. I’m able to lift more, sprint harder, complete the entire class without feeling like giving up. This is a great place to be at now. I’ve notice my growing strength is really helping my running pace again, much to the chagrin of my running friends who have to push to keep up with my increasing pace. Haha!!

My regular pants from before my gastrectomy fit me again. 6 months post surgery, I had lost so much weight and muscle mass that I was swimming in all my clothes. Now I feel like I’m back!

On the food front, a blog commenter Jeff mentioned I focus on food more now. I’d have to agree. Ironically, my gastrectomy has made me more appreciative of good, quality foods with lots of flavors. If you can eat good quality proteins, add all the flavorful elements and feel good afterwards, it’s a big win! You appreciate everything that tastes good, makes you feel good and stays down. Not many people have had to go through an extended phase of not being able to hold food down, so they can’t quite appreciate what it means to eat food and keep it down.

On the life front, I’m happy. My CDH1 diagnosis focuses me on what truly matters in life. I don’t think about it everyday, but it sits in the back of my mind. It gives me a good reminder to push away what doesn’t matter. I strive to strike the right balance between God, family, my health, and work. So long as I keep my iron up, I seem able to keep up, although a bit hectic at times. I try to remember everyday to build up the people around me and remember they too have a story. People and true relationships matter. And everyone has a story.

One final note to articulate just how everyone has a story. I met some new folks for a group run last week. One guy was faster, so we ran ahead for a great run!! I chat while I run and got onto the subject of not having a stomach. (The good thing about distance running is I had plenty of time to explain my story!) We were talking about genetics, its link to cancer, medical protocol and more. As we were talking, he mentioned how odd it was to hear my story. He then proceeds to tell me that his mom was diagnosed with esophageal cancer many years ago. She was told she would live 1.5 years without surgery, but with surgery could live 3 years. He pushed his mom to have the surgery because he wanted his mom with him for the full 3 years. After the surgery, his mom had so many complications that she passed away within one year anyhow. He felt guilty. He said, “I think about my mom a lot when I go running.” I said, “Yeah, I understand. I think about my dad a lot when I go running too.”

Everyone has a story.

A Newfound Appreciation for Iron! 1.75 years post total gastrectomy

Now when I sit down to blog (in glorious peace and quiet), I have to calculate how long it was since my surgery. It’s hard to believe that in June I will have been without my stomach for 2 years! I’m at the phase now where I’ve truly lost track of how long it has been. My lack of stomach no longer dominates my life or my thoughts. My body still reminds me periodically, and I sometimes wonder what my life would be like today with my dad and aunt still in it. I’d like to think those are gentle reminders to focus on what’s important in life.

As the title eludes, I have been taking my separate iron supplement along with my multivitamin and B complex supplement. That addition of iron to my repertoire of daily supplements has led to super energy Marne again…tons of energy!! And it’s amazing how far I had slipped without realizing the root cause. I eventually felt bad enough that I looked it up and realized I exhibited all the symptoms of iron deficiency anemia. I also figured my exhaustion and pace slowdown in running was because I was getting older and out of energy. I ran 5 miles yesterday and was able to drop my pace down into the 7:00 min/mile range again. It’s amazing how much more you can force your body to do with normal iron levels!!

Per WebMD, women age 18-50 require 18mg/day, while men get away only needing 8mg/day (you guys stink!). Between that and my bypassed duodenum, I quickly trended into the iron deficiency anemia “fogginess” and exhaustion. But I’m happy to report, a simply daily supplement of ferrous sulfate is getting me back on track. Make sure you buy the non-coated caplet. Something about the coated one tore up my gut and left me feeling a bit ‘off’.

Onto the story of life…
I love the way my fellow stomachless blogger Steve put it: less things, more memories. To that end, when my son said he wanted to go skiing, we were able to make it happen. Our trip included a LOT of family time, skiing, an airplane flight (half the fun for the kiddos), snow tubing, ice skating, a Utah Jazz basketball game, first ever visit to the great salt lake, and great food! The trip was a blast!! I’m always worried I’ll forget to book a flight or that the activities I plan will be horrible, but I’ve been very impressed how somehow everything just falls into place and works out.

Here is a brief synopsis of my stomachless food and ski tour….

I’m a huge fan of Diners, Drive-ins and Dives. I actually vicariously enjoyed food in the early post-gastrectomy recovery days by watching the show. So, of course I looked up a few spots to check out and settled on the Red Iguana 2 in Salt Lake City. Here’s the mango chicken enchiladas! They were fabulous, and I ate 1 1/2, took the rest to go. I ate my last half 30 minutes later. It was delicious, and I’m picky about Mexican food.
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We had the opportunity to sit on the patio on the beautiful sunny day. Here’s me and my extremely supportive husband:
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Then it was off to skiing. I only go once every year or two, so it took me until day 2 to be ready to ski some blues!! I got there, but my stomachless self definitely requires a mid-day break to eat a snack of some sort.
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Then we found a fabulous locally own Italian place to enjoy dinner. In honor of Steve, I went all out for some decent coffee. They had an amazing cappuccino there!
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Towards the end of the trip, I stumbled on one of the most amazing sandwich shops, called Even Stevens. I had their pot roast sandwich, which was unbelievable.The meat was tender and moist. The bread was amazing, and they had some sort of jalapeno jelly that defined the sandwich. I was able to eat almost the entire sandwich. If you’d seen this sandwich in person, you’d know that was quite the feat. I ate the remainder of the sandwich and the side of chips 30 minutes later in the car once I wasn’t so full!!
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The trip was amazing. The food was incredible. And the wonderful memories we made as a family were unforgettable.

The only challenge post-gastrectomy life leads to is that you no longer have your stomach as a buffer for all the fatty, junky food you consume. You are now more aware when you aren’t eating as well as you should be. It’s tough to eat out every single meal since almost no restaurant limits fat and grease. (I don’t help matters any by going into “vacation mode” and eating too many sweets!) We’re thinking the next trip we go on, we need some sort of kitchenette so we can at least scramble up some eggs for breakfast and have a dinner not at a restaurant.

So, keep living it up my stomachless friends! I know my gastrectomy has taught me that much!

Why?

So, this is a blogging streak for me! Apparently you get some extra iron in my system, and I return to my crazy ways!!

This post is just some open-ended questions that cross my mind sometimes. Short and sweet.

1. Why am I doing so well?
2. Why haven’t I had any major complications or setbacks post-gastrectomy?
3. Can I credit my crazy marathon running past with my overall health? Is this a factor in the quality of my recovery?
4. How awesome must my surgeon be?
5. Why do some doctors not by default put in feeding tubes post gastrectomy? Does the slow and steady weight loss post op as a result (vs the scary fast weight loss) prevent complications such as the gall stones that I’ve read about?
6. Do the food consumption changes post surgery bother me less than other folks?
7. Is it easier to spit out food that gets stuck, rather than being uncomfortable for 20-30 minutes?

I don’t have the answers, but these are some questions that still linger from reading about others’ experiences as compared to my own.

Happy Tuesday! I’m off to spin class in the morning under the presumption that exercise is directly related to my overall health post-gastrectomy. So long as I can make up the calories, I’m keeping it up.