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.


Follow up Appointment 8.5 months post op

I had my MD Anderson follow up appointment, took my blood and met with my doctor. All is well. I had lost another pound since my last checkup but it was kind of my fault… We took the family to Disneyworld and we were skipping meals and walking a whole lot. I knew I lost weight and have been working this week to put it back on. Really no big deal.

My poop floats… What that means is that the fats from my foods are not getting absorbed as well as pre-surgery. So I got a prescription for digestive enzymes. This should be easily sprinkled on foods and will help make sure I’m absorbing everything.

I have another 10K coming up next weekend. I’m doing well running 2-3x per week 5-6 miles each time and holding my weight. Disneyworld was a blast and we shut down Magic Kingdom one night at 11PM and another night at 1AM. My abs got a major workout carrying kids on shoulders throughout the park for 4 days!! I carried water, peanut butter crackers and almonds with me to keep up with meal skipping.

And for my friend & fellow CDH1er Steve, we ate at an amazing restaurant called Yellow Dog Eats. He’s got the “farewell stomach” tour going on; I’ve got the “stomachless & still enjoying food” tour going on. I had the pulled pork nachos and they were divine!! Enjoyed my glass of wine beforehand! I can’t describe it as well as Steve, but the onions were soaked in a vinegar-based awesomeness, the cream cheese with a chipotle sauce plus however they made the tender pork was amazing! It was one of those moments I wished I could devour it all, but I can’t. What I can do is enjoy a good portion and save the rest for round two!!

The start of my brother’s recovery journey

So my brother had his gastrectomy a week and a half ago. Same surgeon, same hospital. Surgery went well, the hardest part is over! Now he’s gotten back home and is starting his foray into life without a stomach.

It’s interesting to compare notes since it seems everyone’s bodies react differently to the gastrectomy surgery. I never had any nausea directly related with the feeding tube running, but my brother said he seems to. Whereas I was hooked up to the feeding tube 24/7 the first week I was home from the hospital, he’s not been. Instead they’re cycling him on at night only to help him try to eat more during the day. But he said he feels nauseous/cruddy whenever the feeding tube starts up. The surgeon is having him try to start at 20mL/hr first and increase every 10 minutes to see if that helps. He thought it might have helped out somewhat.

He was able to enjoy half a ham and cheese sandwich, is digging some cheez-its, eggs and yogurt. He did throw up ( like real throw-up, not spit up) his last night in the hospital. He’s thinking he ate too much then. Post gastrectomy, it’s hard to pinpoint exactly what causes problems because so much has changed! It’s a long journey and this is his beginning to his “new normal”. But he’s strong and I know he’ll do just fine. We’ll just keep comparing notes!!

I’ll continue to post about any differences he has from me. For my personal goals lately, I’m really trying to stay healthy and eat more quality foods. Since my food volume has gone up substantially, the focus can be on quality rather than just high calorie with small volume. I’ve been able to hold my weight steady at 110-111 even with my half marathon.

Also I want to do better at keeping up with my running. Luckily I’m signed up for a 10K in February. And so goes the saying, “you race to train.” Motivating myself to run tomorrow morning by meeting up with a friend!!

Stay strong and have a great evening!

Surgery delays….

I wonder if the stress in preparing for a total prophylactic gastrectomy makes us more susceptible to getting sick. My brother’s surgery has now been delayed because he too came down with some bug. The doctors don’t want you going into this surgery compromised in anyway. So my brother will get rescheduled and go through all the “impending surgery” stress another time. I wished he wouldn’t have to, but I want him to go into the surgery full strength too!

For me, this Saturday marks 6 months post op. I’ve noticed significant improvements in the last month with my ability to almost chug water and most of my food staying down. I can identify my “too much sugar” crashes easily. Today I ate a regular Greek yogurt and poured on the nature valley crunchy granola. Apparently I devoured it too fast and the protein to offset the sugars was not enough. I can work through it; closing my eyes for a minute or so seems to work.

I tried some beef on a burrito the other day. It was horrible. The beef was over cooked and was impossible to chew. So I ended up flipping out the beef and eating the other ingredients. Next time, I’ll opt for chicken. I have been able to eat meatloaf, though I have to go slow and really chew it down. I usually chew so much that I can find the ground up pieces of fat and discreetly put them in the trash or on my plate to the side. But I was hoping the iron of the meat would help me out, along with the protein. I’m holding strong to my theory of protein, protein, protein. This is hard as a bit of a carb-a-holic.

On the running front, I did 6 miles before work yesterday. It went really well. I’m so tired by the end of the night that it’s insane, but most same people’s alarm clocks don’t go off before 5AM. I know I need a big post of food strategies and my surgery prep recommendations, but I’m being lazy. Will try to do that another night.

Have a good night.

Food as Work

At this point post gastrectomy, the best way to describe the day-to-day is that food is work. Junk food and sugary stuff can make you feel hypoglycemic and cruddy, but they certainly are easy to chew, swallow, and never come back up.

I’m at the point now where if I focus enough and eat constantly, I have the ability to gain weight. Unlike folks with stomachs though, I never really have the power to overeat. The best way I describe it is like when people gorge themselves on a big Thanksgiving meal, except I can get that full from a whole sandwich and side.

For my new stomachless life, I am choosing my foods on what I think I can chew and keep down, especially if it’s out in public. I think I even chew more at restaurants in order to not have to run to the bathroom to spit it out. These incidents are becoming less and less, but it’s still in the back of my mind.

This morning I was feeling a bit ‘gastrectomy lazy’, ie tired of my constant focus on food, protein, calories, etc. And since I don’t ever feel that outright stomach pang of hunger, I was thinking how easy it is to lose weight post-gastrectomy. Suppose at some point, you’d get weak enough that you’d want to eat, but skipping meals to go do something fun is pretty easy. Thank goodness almonds are picking up the slack for me.

I will say today was the first time since my surgery I actually had the desire to bake. I baked up some pumpkin spice muffins, and they were delicious. A bit sugary, but tasty. I’m finding my body is rather quickly adjusting to sugars in food. Of course, sugars offset by protein is better and important, but I’m able to enjoy my baked goods. Super sweet desserts throw me into my “sugar coma”.

In general, I’ve found my desire to cook has gotten better lately. It’s a challenge and motivation to have small children to whom you’re trying to instill good eating habits. It probably doesn’t help on the nights where I just want to down some peanut butter and call it good. So I’ve been making an effort…even baked up some acorn squash the other night. My kids will have no shot at knowing green beans for a long time though because that is still one of the most difficult items to eat, along with corn.

I tried a soup with lots of good vegetables in it this past week (zucchini, carrots, etc) and was able to eat them skins and all without them coming back up. That was a welcomed event. I will continue to try to integrate simple veggies into my diet.

I will say that an unexpected food to go down well has been pork products, when cooked right. I’ve had some very tender pork loin that I was able to enjoy with no issues. And tonight had some pork ribs that went down mostly fine. Since meats just pack in the protein and iron, I know that’s a good thing!

I will end this blog with a reminder that people take for granted what they have. Now that I don’t have a stomach, I think about how great and convenient it is to have one. But again, it’s nothing unmanageable. With the CDH1 mutation, I’d rather miss my stomach than have my family miss me forever.

A little over 5 months post op

Post gastrectomy is a constant roller coaster. Generally right now, it’s going really good. My life is crazy busy in a good way, hence not much blogging.

The biggest challenge to post gastrectomy is how often you have to eat and how knitted into the fabric of society eating is. Meals are a bit of a roll of the dice. You can be marching along doing awesome all day and then end up spitting up your dinner because you didn’t chew it down enough. So you have to appreciate your victories and not let it get you down when a meal doesn’t work. This positive mentality is easier to put down in a sentence than to live out in real life.

I’m getting better at knowing what my body can and cannot handle. Apparently I can eat peanut butter M&Ms really well. I do have to watch sugars though, particularly when there’s no protein coupled with it. I think peanut butter M&Ms do so well just because the peanut butter has the protein. If I do eat too much sugar, I just feel like crap for 15-30 minutes until it passes. This doesn’t often happen to me now luckily.

I’m highly susceptible to caffeine. I drank an iced tea the other day that had caffeine and didn’t give it much thought. I ended up a jittery disaster afterwards. I had to eat some food to get past the jitters.

A few new additions to my diet:
Every type of almond
Grapes with skins (really cautious and chew a lot)
Tomatoes – cut off skins
Pineapple chunks
Pirate booty (I can shovel this stuff in my mouth and swallow it as if I had a stomach. It almost melts in your mouth.)

Major hydration victory: I can just about “chug” water!! I’ve also notice my portion sizes are expanding pretty well!

Running Victory: I was able to run 4.3 mi at an average pace of 8:01. So I’ve still got it. (Mostly I ran faster so I could get back for water sooner!) The run was everything it could be. I felt great, was able to hydrate well before and mentally needed the run to purge the craziness of the day out of my mind.

Life victory: I STILL beat cancer!


My Bump in the Road

So, my surgeon told me that in general, you should trend upwards; some days might not be great, but the overall trend should be improvement. I had been getting better…until last week. He also talked about everyone hitting some sort of bump in the road to recovery, so I guess this was mine.

Some nasty “bug” has been going around and a week and a half ago, it hit me hard. It was just general crud/infection: coughing, congestion, head cold. But what seemed to happen when I got all that congestion was I couldn’t hold down solid food. Since my mornings consist of lactose-free milk with protein powder and later yogurt, at first I just thought some of my meals were going badly. But over a day or so, I realized it was more like every meal, every snack, anything solid, anything with a consistency beyond yogurt. Yikes…

So, I focused on hydration and tried different foods to see if I could hold down anything. I kept up my protein shake and my yogurt to give me a good start. Foods that I tried and failed: chicken; cottage cheese; pizza, tortilla chips; any real, non-processed food. Foods that worked during my debacle: peanut butter, peanut butter M&Ms, sun chips, ice cream. I spit up most every bite I swallowed, every attempt at a “meal” for a week. I sustained myself on junk food, yes junk food. It’s almost as though you can’t push your food down when all your congestion is coming back up, unless it’s sugary and processed. This cued hubbie’s comment, “You need to see a doctor. I haven’t seen you eat any meal in the last week that you haven’t spit back up.” I emailed my PA but knew it was related to the “bug”, and I was at the tail end of this illness; I didn’t want to jump the gun if it was all related to the “crud”. Her response was basically make sure you’re still pooping. (See, this gastrectomy thing all goes back to poop.)

Another lesson learned: I tried some decongestant pills that were labeled for 24-hrs and another day for 12-hrs. Bad move. Disgusting as this might seem, I would cough them back up 6-12 hours later. Yeah, that warrants a second, “Disgusting!” So, note to self, for decongestants, must use nothing labeled for long time periods. I checked some children’s liquid decongestants and I’ll try that next time. To date the pill form of ibuprofen and amoxicillin have gone fine.

I lost a pound or two this last week and a half. And I stopped running. (My theory is, if I’m sick and not eating, I shouldn’t be running.) I did continue taking my lunchtime walk. It helped me deal with the frustration of another failed meal and got me outside in this wonderful fall weather. I will say, this was definitely a frustrating, tiring week. At least I had busy days to distract me from how poorly eating was going. I am an amazingly grumpy person by the end of the day when I haven’t been able to eat any substantial food and my apologies for anyone who met “Grumpy Marne”. On the upside, since I don’t ever feel hunger, I don’t think I was all that bothered by not really eating. Aside from the tiredness, it’s not like I felt starving all the time. And hooray for my horrible, high-fat diet for preventing me from losing more weight than I did. My nutritionist would probably have a heart attack reading what I ate over the past week.

The end to this horrible saga was 2 days ago. Thursday I was able to eat again, real food. Small bites, same as before. And it all stayed down. I can’t express just how happy and satisfying it was to finally eat some real food and just have it stay down. Amazing. I felt so good that night, I ran, pushing my daughter in the jogging stroller while my son biked alongside. It was awesome. Sunset was beautiful, I felt so wonderful; again why I love running.

I’ll probably have to focus on excess food for another week so I can try to gain some weight back. Before I got sick, my weight was stable without having to get too gung-ho about 24/7 food intake. I think I’m able to tick that scale back up. I can only say I will be upset if I catch another bug.

Have a good evening.

Some good meals lead to a bad meal

My dinner last night went so well! So lunch today was in the epic fail category. Tried Buffalo Wild Wings boneless chicken. Nothing, nothing stayed down. Bad, bad, bad.

I’d say my body is a gauge for food quality. The breaded, fried chicken strips I get from Sodexo that are fresh chicken, breaded on the spot & fried go down very well. Moist, easy to chew. I’d say BWW is frozen-fried, hence why it’s so tough.

No big loss, I’m growing more flexible for alternatives if a meal fails. I downed my almonds in the car afterwards. Problem solved.

Have a great evening and perhaps stay away from BWW chicken!

Tonight’s Dinner

At a wedding reception tonight and was a little leery about how dinner would go. I’ve never tried prime rib, but I gave it a go, cut little pieces, chewed a lot and it all went down wonderfully well!! Prime rib, cooked green beans, scalloped potatoes! Awesome!

You should’ve seen how big of a slice that prime rib was. I made a huge dent, impressive!

Oh yeah, and that glass of white wine! Life is good!

Protein powder

So I got a little behind on shopping and had finished all my GNC Wheybolic protein (both vanilla and strawberry). Both flavors were decent; I personally prefer vanilla because it tastes less fake to me.

So in desperation I started using the pure protein vanilla creme I’d gotten at Walmart a while ago. Can you say disgusting?? So gross. The powder wouldn’t break up in the blender bottle, and when it did, it was super frothy and disgusting to drink. Nothing kills a drink like a small chunk of powder in the middle…

I took Friday afternoon off (awesome!!) and got back to GNC. I went ahead and asked for one that tastes less sweet. The wheybolic one is so “over sucralosed”, it was just too sweet. So I’m trying the GNC 100% whey one and it’s slightly less sweet. It breaks up in the blender bottle perfectly!

Overall my protein shakes seem to be keeping me healthy, but it’s tough to drink them without a plan. I do 8-10 oz lactose free 2% milk with 2 scoops of protein powder. I have to sip on it. I can usually drink half pretty quickly, then break 5-10 min and drink the other half. If I don’t give myself enough time, I just feel downright crappy. Maybe protein overload to the gut, who knows.

I’ve found that integrating my shake into my schedule works well. If I go running first thing in the morning, I drink water before the run to get the gut moving and me hydrated. Then right after my run, I make the shake. If I can drink half, then shower, then drink the other half, it goes very well. And that way, by the time I go to work, I’ve gotten in 300+ calories and 50 grams of protein! (And as an added bonus, no chewing required!)

I’ve also has that purple jar EAS one in the French vanilla flavor. That one tasted great and broke up well, but I’ve never found one in a big bottle. I always feel like I’m getting jipped if I can’t buy in bulk. If I find a big bottle, I’ll let you know

I will say that I’ve also run out of milk before and water works just fine with the protein powder. It’s actually lighter and easier to drink since it’s less calories.

So that’s my current protein assessment. Today’s been a fun day so far. And I even had a few minutes to post my protein assessment!! I’m sure there’s other ones that break down well. I’ll try to add info as I try them out.