Three Years! – Obviously a 3 year update…

Today marks three years without my stomach.  On May 23rd, 2014, I said farewell to my stomach…never to be seen again.

What can I say about three years without my stomach.  I’ve become happier, wiser, and more balanced.  I put my priorities in things that matter in life – health, family and friends, and fun.  Although this video looks pretty staged, I really like the message within and it sums up how my life changed after I dodged the stomach cancer bullet.

 

In terms of my weight, I have been sitting at 119-120lbs for the past month.  I’m now 5lbs off my pre-surgery weight. My summer shorts from last year, don’t fit anymore.  It’s weird to say that I’m actually happy about that.  Who says that?!?!

My energy level continues to improve.  The body is an amazing machine, if you push it a little bit at a time, it will adapt.  Look at Marne and Steve who are completing feats that even those with a stomach don’t achieve.  Amazing.

As for eating, I continue to push the envelope on what I can and cannot eat. Sometimes, you just want to eat something so you do it. You regret it later but the brain is a funny thing…give it enough time and it forgets the pain and you do it again.

The other day I watched the recorded, “Spotlight on Gastric Cancer” that was held in Seattle this year.  My mom and I went to the first annual one in Philidelphia and hope to attend another one in the future as it is a great opportunity to network with those in the CDH1+ community.

During this presentation a question was asked, “What sorts of things do you wish you would have known about at the time, or what kinds of things have you learned since that you wish you had the knowledge about from the beginning?”  It brought back a lot of early recovery memories and I thought it would be helpful to give my two cents.

>  If at first you don’t succeed, try, try, again.  Food is scary after you’ve had your stomach out.  You know, even 3 years out…some foods are still scary.  During my first year of recovery, I couldn’t tolerate sugar well.  Now, I can eat it in moderation (i.e. a full cookie, a small piece of cake, small portions of freshly baked breads).  I’ve had great success stories and some not so great ones.

>  Make sure you are mentally strong and have a good support network.  One thing about this CDH1+ mutation is that it really plays with your mind.  It’s great to have people to bounce ideas off of.  Having your stomach removed is like 10% of the recovery game, the other 90% is the mental component.

 >  if you don’t have anyone to speak with, you can reach out to the no stomach for cancer community, genetic counsellor, and social media

>  Facebook: CDH1 Mutation GeneSupport group for partial and total gastrectomiesStomachless Living Support Group – Support For Full & Partial Gastrectomies

>  Test your body. Push it a little and see how it responds.  A little bit of pushing will go a long way.

>  Go to a centre where they are well versed about CDH1+ as well as the prophylactic (curative) total gastrectomy.   My genetic counsellor as well as my surgeon are all within the same hospital network.  I continue to be followed annually.

>  Probiotics.  They have been a game changer for me over the past 6 months.  I think I was lacking something and now I’m afraid to stop taking them. I’ve noticed a great gain in energy since I started. On the same note – take your vitamins.   B12 deficiency is real and can have long term health consequences if your levels aren’t maintained. Also monitor your iron, calcium and vitamin D.

 

I’m sure there are a lot more other tips but I don’t want to drag this post on and on.  The past year has been even better than the previous two years. I am excited to see what this next year will bring to the table!

 

 

 

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Exercise is medicine – 2 year, 10 month update

I openly admit I’m a yo-yo gym attender. Looking back on old blog posts, I’ve mentioned always starting certain exercise activities and then not mentioning ending them. Well the secret is out, I only usually attend the gym in the fall to winter months. After that I end up falling off the bandwagon because the weather is too nice to work out indoors. I switch to playing women’s fastball in the spring-summer. Currently, I only indoor rock climb and participate in my yoga with Adriene intermittently.

I’ve done this for the past 5+ years and over the past three I’ve noticed a trend. When I exercise, I gain weight.

What?! Wait? When you exercise you gain weight? The pre-gastrectomy old me would have said…”shut up and get out of here”. For the past two gym seasons I’ve managed to put on about 4 to 5 extra pounds. As soon as I stop, I lose it and drop back down to my usual 111 to 112lbs. I’ve also noticed that I have more energy and require less sleep.

Many of the benefits I’m reporting are well researched in the literature but it’s a whole new world when you actually experience it.

I only attend the gym 1-2x a week (step class, zumba class, or aerobics) and go for about a 45 minute walk 1x a week. That combined with my active job is enough for me to maintain all those positive benefits.

Another quick thing I wanted to mention is that I started taking a probiotics (by fluke and a bit of another story) and have noticed my energy level increase significantly. For two weeks, I operated like I did before surgery and it was unbelievable. I didn’t realize it was possible. After that I had a pretty hard crash for a day or two but those two weeks were fantastic. I’m now afraid to stop taking them. I really believe they help with digesting food post gastrectomy which improves nutrient absorption. I tried to perform a literature review to see if anyone had done studies on probiotics post total gastrectomy but didn’t come up with much. If anyone has any scientific evidence about this, I’d love to read about it in the comments below.

So there it is: Exercise IS medicine

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All ready for the gym

Cereal is back on the menu

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I miss cereal.  Let me re-phrase that, I missed cereal.  I have attempted to eat cereal a few times each year in hopes that one day it won’t go right through me.   I am excited to report that that two weeks ago was that day.

For me, cereal was a breakfast staple for many years. Not only was it quick and easy, there were so many varieties to choose from.  I could wake up, eat a bowl of cereal and be out the door in no time.  I missed cereal.

Often I would walk through the grocery store, pick up my old favourite cereals, read the ingredient lists and then return the box back to the shelf for I had vivid flashbacks to my dumping syndrome day.  Many varieties of cereal have a high sugar content with glucose or fructose being in the first few ingredients. In addition, I try to avoid too much unbleached wheat flour as it makes me feel ill.

Two weeks ago a box of Multigrain Cheerios ended up in the shopping cart.  Not only were they one of my favourites but they were also on sale.  The sugar content was 6g per 1 cup.  Cheerios are also high in iron.  It was time to try eating cereal again.

I started with half a bowl of dry cereal in the evening.  It’s better to eat sweetened foods later in the night because my mom and I both believe that a “buffer” is created with food eaten earlier in the day.  Less chance of dumping.  After finishing the bowl, I waited for the inevitable to occur….but lo and behold. I was fine.   No gut pain. No gurgling. No fatigue or nausea. No dumping!

Feeling excited, I ate a small bowl of cereal the next evening with milk.  Again, I was fine.  High fives occurred all around in our house.  Also a little dancing. Okay, a lot of dancing.

The next test was to eat it first thing in the morning. No buffer. Fear, yes.  This morning, I poured myself half a bowl of cereal with milk.  I told myself to eat it slow but I definitely ate it in 10 minutes.   About 10 minutes after I finished, I started to feel my heart rate rise.   But about 10 minutes after that, I was fine!  No fatigue, no diarrhea, no nausea.  I’ll take it as a small victory.

A big turning point came about 2-3 months ago.  I decided I was tired of avoiding foods I wasn’t sure about and that I would just go for it (within reason).  Up until then, I was apprehensive to try new foods or foods that had caused problems in the past.  It’s frightening because you don’t know it’s bad until it’s too late.  Much like drinking too much alcohol.  Everyone is having a great time until it really hits you. By that time, it’s too late to turn back and you must deal with the consequences.  It was time to face my fears.

Since then I have discovered that I can tolerate more than what I had previously thought.  It’s exciting that as the months pass, I find myself adding more and more foods to the can have list and not the can’t have list.  A great start to 2017!

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Two years! – a 24 Month update

Today marks two years since I said farewell to my stomach. Do I miss my stomach? Yeah, I still miss it. But as time passes I learn more and more about living without the organ that would have killed me.

I’m currently sitting at 120lbs. I’m starting to look like I did prior to surgery. Afterall, I’m only 5lbs off. However, I am more lean than I was before surgery. No complaints. For those of you who are afraid of nor gaining the weight back, it will come back but it takes time and effort.

I eat a lot. A lot. I’ve never counted calories but I eat frequently. I believe this has contributed to gradual weight gain. The other day I was offering my brother some snacks from my backpack as it was near dinner time and he hadn’t eaten yet.

Me: “Banana?”
Brother: “no thanks”
Me: “Trail mix?”
Brother: “no thanks”
Me: “Starburst candy?”
Brother: “no thanks”…pause….”how much food do you have in there?”
Me: Laughing, “granola bar? Lifesavers? Peppermint?”

I always have food on me. The fear of needing food and it not being there still sits with me. When you need food and you don’t eat, things go downhill pretty fast. Nuts are my usual go to food. I also still like “kind bars” and “quest bars”.

I can tolerate most foods now. I can eat sweets but in moderation and spaced out overtime. Two weeks ago I learned I can eat ice cream cake. Huge score!!!
On Friday, I ate half 1/4 of an assorted subway sub and 1 cookie and felt not too bad. If given the choice, I still avoid bread due to the carb crash but I’m able to eat it in small quantities without dumping. I miss eating sandwiches so sometimes I eat them and deal with the aftermath. I call it foggy brain.

My energy levels have not returned to where they were before surgery. I am not sure if they will. Brandon said I lost my energy storage tank so fatigue hits me faster. Sometimes I can go all day and other days it’s like I haven’t slept in days. Pacing is key. However, sometimes I get frustrated that my energy isn’t where it should be and just push through the fatigue. I’m still unsure if this will help me overtime or just lead to burn out.

I am able to work about 30-32 hours a week comfortably. This allows for a good work-life balance. It took me a while to understand that this was my ideal balance as I used to work 42 hours a week and man the house. I am working on accepting that 30-32 hours as a physio is what I’m able to do now. It’s been a tough fact to swallow (pun intended).

As I look back over the past two years losing my stomach has been more of a mental struggle vs. physical. The surgery was the easy part. When you are super healthy and decide to have a life altering elective surgery based on statistics you have to be mentally strong.

I have good and bad days. The bad days aren’t even that bad anymore. But on those not so good days, I’m thankful that I have a strong support system in place. Not only do I have my family and friends, I’ve made great connections with people around the world going through a similar situation.

I often read the posts of people early out of surgery and remember those tough times just after surgery. I also read back through my own posts to see how far I’ve come. Time really does heal. For those just fresh out from under the knife – hang in there!

As my life returns to a consistent normal, I find myself searching for interesting topics to blog about. Someone once told me that I will stop blogging when I feel like I don’t need the blog anymore. Although I’m not fully ready to stop documenting my adventures, I may be scaling back the frequency of the posts.

Thank you all for following me over the past two plus years. Life is all about celebrating the small things. Keep smiling!
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Cruising stomachless style – a 21 month update

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There’s something to be said about cruising without a stomach.

Late last year my husband and I booked a cruise to the Carribean with another couple.  None of us had ever cruised before but thought it would be a good trip as we heard that there is something for everyone.

Prior to leaving, I had some fears about the meals. Would they be readily available? Will they have my oatmeal for breakfast? How much sugar is in those mixed drinks? After experiencing dumping syndrome in full force last month, I can say that the fear of it happening again was loud and proud.

When travelling, the arrival and departure days are the most difficult. These are usually long days with limited access my comfort foods. Often you are unable to bring fruit or meat through the security gates. This knocks bananas or wraps. Also, depending on the airport, there are limitations on what you can purchase to eat.

In true trip spirit, I picked up a bunch of Kind bars as well ingredients to create my own trail mix.  Often I find the mixes in the stores are too sweet so instead I mix a variety of unsalted nuts with pepita seeds, sunflower seeds, and craisins.  It was my mom’s recent creation that I copied but I digress.

Our flight was at 7:30am which meant we had to be at the airport for 5:30am. Add in transport time and we are now at 4:30 am. But I can not forget to factor in last minute packing time so I’m now up at a healthy 3:45am. I wasn’t hungry when we got up so I didn’t eat anything. I figured that there would be a Tim Hortons there where I could order a breakfast wrap. Much to my surprise, the Tim Hortons at the airport did not sell breakfast wraps which left only muffins and bagels. Both would have resulted in my first vacation excursion – the porcelain throne. At this point, trail mix for breakfast didn’t look so bad.

Thankfully, we were given an in-flight meal which was a small sausage quiche with potatoes and sausage on the side. I wish I had taken a picture to display how unappetizing it looked but when you haven’t eaten breakfast and you are slowly running on empty, you’ll eat.  I scooped out the egg portion but left the pastry. I didn’t even attempt the potatoes and sausage as it was already a rich breakfast. So I may have eaten 1/2 a cup of egg substitute for breakfast.

After we arrived at the airport we boarded a bus to take us to the port. By the time we cleared customs, got our boarding pass and boarded the vessel it was rounding on 2:30 pm. Needless to say, we were all hungry, stomachless or not!

In true cruise spirit, the first place we located on the ship was the buffet.  It must have consisted of at least 10 different areas.  There was a bar just allocated to different types of bread.  There was even an area where someone would create you your own custom built ice cream sundae!  If I still had my stomach I would have loaded my plate until it was overflowing with food, eat it in 10 minutes and then return for seconds.  Maybe I’d even eat some dessert and then go back for more main course.

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The bread bar

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But there is a double edge sword to this buffet.  I was like a kid in a candy shop with only 25 cents to spend.

Each time I visited the buffet, I would survey the land to see what was available. Then I would narrow it down to my top few dishes.  Often they were the high protein, biggest- bang- for -your -buck kind of dishes.  Rice…no thanks.  Mashed potatoes? Maybe for the weak.  Steak – That’s what I’m talking about!  After finishing my small plate of food, I would often say farewell to the buffet and see you in a couple of hours.

I spent some good time at that buffet. In the mornings, I would get up early and go get early breakfast (oatmeal with walnuts, sunflower seeds and a mashed banana) and then go for late breakfast around 10:30 am (bacon, eggs).  I would also eat early dinner at the buffet around 4-5:30pm and then 2nd dinner around 8:30pm.  One day my friend was looking for me and she decided to check the buffet and of course that’s where she found me. We had a good laugh.

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One of my favourite mid day snacks – build you own nachos

When it came to 2nd dinner time, we often ate in the main dining room which consisted of a three course meal. I would often just order the main meal and share it with my friends. If I wanted an appetizer, I could often finish it but then only eat 1/4 of the main meal. The cool part is that the dining room dinner had many sugar free options that were listed on the menu. This also included dessert!  I definitely took advantage of the sugar free ice cream.

I couldn’t drink many of the beverages offered on the vessel as most of them were mixed with juice loaded with sugar. One day I happened to catch them refilling a juice machine and the first ingredient was high-fructose corn syrup, followed by glucose.  I quickly dumped out the glass of juice I had been holding.  I mostly ordered white wine, beer, or caesars on the ship.  I had sips of my husband’s frozen mudslides and other delicious sugary drinks.  I missed having frozen daiquiris, margaritas, and other delicious frozen beverages.

So maybe I couldn’t eat heaping amounts of food at the buffet. Maybe I had to bypass the ice cream bar.  Maybe I had to avoid the sugary beverages.  Maybe the buffet was a constant reminder of life prior to my total gastrectomy.  However, I have to focus on the positives.  I ate like a Queen those seven days and how much weight did I gain? Much to my own surprise. Zero.

 

The infamous dumping syndrome – a 20 month update

I thought I was dying.

Today I experienced dumping syndrome in full force. What I thought was dumping syndrome prior to this episode was more like watching 5 minutes of a Lord of the Rings marathon- extended edition.

It is something I would not even wish upon my worst enemy.

It all started with the pina colada smoothie. Brandon and I were preparing delicious beverages prior to resuming our game of Power Grid. The smoothie consisted of 1 cup of coconut milk (unsweetened), 1 cup of fresh pineapple, 1 banana and 1tbsp of honey.

All of the ingredients seemed pretty safe as there wasn’t a lot of added sugars. Maybe the fruit would have been of concern but I had eaten pineapple in large amounts and had been fine.

After blending this delicious beverage I ended up with about 500ml of smoothie. I drank about half of it in 10-15min.

You can already see where this is going.

Everything seemed fine and then it happened. Minute 16. Initially I experienced cramping. I figured I had just drank too fast as I often experience cramping after eating. Then came the pain and burning. It felt like acid was melting my insides. In hopes to neutralize the acid, I ate 4 crackers and 5 handfuls of left over movie popcorn.

The good thing was that the acid feeling stopped but the waves of pain continued and worsened. I decided to lie down and then the nausea came. Up I went to the washroom and it was at this point I knew the inevitable was happening.

I had read about this a lot and it was happening now. There was nothing I could do to stop it – the infamous dumping syndrome.

So I’m in the washroom unable to stand up straight, in pain, and feeling very ill. My breathing became rapid and shallow. I started to get really hot. I felt weak and lethargic. The literature wasn’t lying.

Then the big question I had been wondering about for a while was answered. Can you vomit without a stomach?

According to Websters dictionary to vomit is to bring up the contents of the stomach through the mouth.

So the simple answer would be no. No stomach, no vomit.

But now I know what does happen. Heaving. Then if your lucky regurgitation between heaving. But the good part is that no stomach = no stomach acid. Bonus! But it hurts because you heave and there is nothing that releases the pressure. I am grateful that this didn’t happen to me until now because my insides are all healed from surgery but this does happen to many early after surgery.

So after I emptied the top part of my intestines, it would only be fair to empty the bottom. I’ll spare the details but I can say that my colon hasn’t felt this clean since my colonoscopy last year.

After the dump, literally, I could almost immediately feel everything returning to normal. Although it felt like a lifetime, Brandon said I was ill for about 40 minutes.

My insides are still recouping from all the action this afternoon. I mentioned this episode to my stomachless friends and Marne replied, “It’s funny to me how you’ll be smooth sailing for a while and all of a sudden something reminds you that you don’t have a stomach!”

She couldn’t have been more correct.

Livin’ lean – 16 month update

Tomorrow is October 1st and I almost missed my 16 month update.  I’ve been telling myself, “oh, I will blog this weekend” and then that time comes and goes.  There is one major reason why I’ve had a hard time blogging this month – I’ve been busy living life!

It’s true that my life has a ‘new’ normal.  But when can you drop the ‘new’ and just say it’s life?  When is ‘new’ old?  It’s now been one year and four months. Is it still a ‘new’ normal or is it just normal?  I’m almost ready to drop the new and say it’s just life.

Yea, I eat frequently throughout the day.  Yes, it’s true, you can always count on me for giving you a snack if you get hungry because you know I keep food on me at all times.   My friends know that if they ride in my car they will always need to move that bucket of nuts before they sit down.  I still eat more than I should at a meal and then pay for it later.  Food coma has a whole new meaning.

I mentioned returning to the gym last late last year. That lasted until March before my gym membership expired.  Over the summer I played some baseball but didn’t do much formal exercise. I am happy to report that I have returned to the gym 2-3x a week.   I also signed up for six personal training sessions for extra motivation.

On the first day, I received a mini assessment where my initial measurements were taken as well as weight and body fat percentage. My training goals were also discussed.  Shockingly, I have 16% body fat, which is similar to an athlete – Score! However, I also have the forced expiratory volume of a 51-year-old (this is how fast you can expel your air after taking a deep breath).  This taught me two things:

1) I am a great advertisement for my personal trainer when I work out with her
2) I need to work on some serious breathing exercises

I’m optimistic that with returning to the gym, I will be able to regain the strength that I have lost over the past year.  It was different for my trainer to hear that the purpose of my personal training was not to lose weight, but to gain weight.  Often, my trainer will point out to me that I’m smiling through my work outs no matter how brutal the exercise.  I don’t realize this is happening but I believe it’s because I’m happy to be back at the gym again AND because if you frown and tell yourself the exercise is brutal, it will be 10x worse. I guarantee it!

No Stomach vs. No arm? A 14 month post gastrectomy update

I have been meaning to blog for the past month; however, June was a wild month.  Emotionally and physically.

About a month and a half ago, I was presented with a new job opportunity with a different company.  I have been with the same company since I graduated from physio school and they have been very good to me over the past six years.  Even more so over the past year as I recovered from surgery.  However, this new opportunity was a hard one to pass up.  There was a lot of opportunity to grow as a clinician.  After serious consideration and long talks with friends and family, I decided to take the jump and resign.

The unknown is scary.  Leaving something you are sure about to try something you have never done before is difficult.  You aren’t sure of the outcome so why would you change?  Jump back to December 2013, I was working full time, living a regular normal life, and then….CDH1 positive.  Do I remove my stomach? Do I keep it?  I knew that living without a stomach was possible but how would it affect me? Was I making the correct decision? It was the unknown.  We all know what I chose to do and now look where I am now.  Happier, healthier, and stronger. So although I don’t know everything about what my new job is going to shape up to be, I do know that it is yet another adventure and you don’t grow if you don’t challenge yourself every now and then.

Now for the physical event…and it’s NOT GI related for once! I was playing baseball three weeks ago and was sprinting to first base when the first baseman crossed the chalk line and I slammed into her.  Next thing I knew I was staring at the beautiful blue sky.  I got up thinking I was okay, but was quickly proven wrong.  As the game went on, my right wrist and elbow became increasingly stiff and swollen which eventually took me out of the game.  I figured I would go to bed and then wake up the next morning and be 100% better.   The next day, I couldn’t bend or straighten my elbow and my hand was incredibly painful.  After a quick visit to my MD (who basically said I don’t want to see you, go to Urgent Care), and four hours in urgent care – I returned home in a sling and put off work for a week.  Luckily there was no fracture but to spare you all the details, I have a new respect for people who only have one arm.

The reason I am sharing this story is not for sympathy but to demonstrate success.  One day I caught myself saying, “I would rather have my stomach removed then to go through this with my arm again”.  The surgery is becoming more of something in the past and something I no longer dwell on 100% of the time.  My “new” normal is really becoming my normal.  The past two months have been huge for my recovery and I feel like I’m almost there.  At my last follow up with my surgeon, they let me know I was 2-3 months behind in my recovery due to the stricture and that I should be fully recovered by August.  I believe it.

So what does my normal look like now?

  • I still have to eat every 2-3 hours.  If I don’t, I usually start to get tired which is followed by bouts of feeling lightheaded and finally a throbbing headache. That usually reminds me that I don’t have a stomach.  I continue to live the hobbit life and have 2nd breakfast, 2nd lunch, 2nd dinner, and dessert.
  • I am able to tolerate more sweets but that usually results in flatulence.  Just know you’re taking one for the team, sorry friends.
  • I still don’t tolerate eating white bread products or heavy carbs (i.e. bagels, hot dog/hamburger buns, etc).  I end up feeling really dopey, foggy, and often fall asleep immediately after if I’m at home.  It’s just not worth it.
  • I eat a diet high in protein.  I still drink smoothies and add protein powder to my coffee.  I continue to make my own protein bars.
  • I am able to work part time.  It takes me about 15-20 minutes to prepare my food for the day for work due to all the snacking. I have to wake up 20 minutes earlier to eat breakfast because I can no longer eat cereal in 5 minutes or less.
  • I take supplements daily – B12 sublingually, multivitamin, vitamin D, calcium, iron
  • I miss eating large portions of ice cream, bagels, and sandwiches.  Actually just large portions in general.
  • I haven’t been able to break the 110lbs barrier.  I’m used to my body image and am only reminded that I am skinnier when I look at photographs of myself.

So that about sums up my June.  Last week I was notified that my hospital roommate recently passed away due to cancer.  She was an amazing woman, a fighter, and the best hospital roommate I could ask for!  I kept in touch with her over the past year and it was a shock to find out about her passing.  We had a lot of visitor parties in our hospital room and I was able to get to know some of her family.  My sincerest condolences to her family and friends.

It’s events like these that remind me that life is fragile and things can change quickly.  If you think you are having a bad day, just know that someone else is struggling to survive.

Catch up with you all in August!

Guest post from my mom – 5.5 years post gastrectomy

Happy Canada Day to all my fellow Canadians!

Today’s post is a little different from my usual posts.  Recently, my genetic counselor asked for some tips that we could give others about living without a stomach. She wanted to assemble a resource guide to help others with the CDH1 mutation decide to have surgery or not and to answer common questions about life after a total gastrectomy.

I decided to ask my mom if I could share her response to some of the commonly asked questions when deciding to have a prophylactic total gastrectomy. Of course she said, “no problem”.  My mom is now 5.5 years post total gastrectomy and is doing fantastic.  Although my recovery had some bumps in the road, it was a lot easier because I had my mom who had already been through it to give me advice.

So here’s my mom’s responses to some of the commonly asked questions about having a total prophylactic gastrectomy and also some of shared experiences about her recovery.   Everyone’s recovery is unique and my mom was in her early 50’s when she had her surgery.

On my decision to have the surgery:

Once I found out I was positive, all I could think of was my children and how they would be impacted. I wanted to set a good example for them and wanted to be alive to watch them grow. Because of Technology, I was given choices. Live a different life following surgery or have an 80% chance of a bad cancer diagnosis (without any control of outcome) sometime in the future.

I chose to do something with the knowledge I had been given. I was not afraid of surgery.

Gastrectomy truths and how I kept myself happy during the recovery period:

Your life will be different post gastrectomy. It will be a “New Normal” Not the same as before, not better, not worse, just different. Whenever I am having a bad “Food Day” I always remind myself that I could be dead. Makes me feel a little better instantly.   I ride out the uncomfortable feeling and it resolves 20-40 mins after the offending food(s) have been ingested.

Keep a food journal. Your food intake will be based on trial and error. Try something and if you have issues, leave it and try again in a few months. In the beginning, eat everything you can manage. Don’t worry about nutrition. You have vitamins for that. Just get as many calories as possible. Avoid sweets or simple carbohydrates (white bread, doughnuts, bagels) Rice, eggs, ham, nuts, cheese, beans, ritz crackers and processed foods go down easy. Fatty meats are easier to eat than lean and rare easier than well done. Prime rib and New York steak and salmon are favorites. So are French fries! Eat mashed potatoes, squash, carrots and peas and oatmeal and cream of wheat at every opportunity.

For someone who had eaten “healthy” and watched for weight gain, my “new normal” was whole new way of thinking . I still enjoy food, can eat as much as I want and not gain weight. Bonus.

For the first months post surgery, I would feel “stretched tight” after a meal. Get up and walk around. If you feel nauseous, do jumping jacks. It’s the last thing you want to do but it works. The uncomfortable feeling will subside faster.

You will be flatulent and smelly. Your body will eventually adjust to digesting the fats. I always have “Just a Drop” in my purse.

Your stool will be many different colours and usually looser. 5 years post gastrectomy and my poop looks like it did pre surgery.

You can drink alcohol and it hits you fast. It was at the 2 month mark before I had my first glass of wine.

Do you regret having the surgery?

Absolutely not. I am in much better shape physically than my peers. Go to the gym 3-5 times a week. Eat everything I want. Thinner than I was and have bigger boobs. Love watching my family reach their goals.

Life is good.

Life is good mom, well said!

No Stomach, No Problem

This time last year, I just been moved to the ward from the step down unit at the hospital. I had survived my first two days without my stomach and was doing well. I didn’t know what the next year of recovery was going to look like but I knew there was going to be an adventure ahead.

Jump forward 363 days later.  I’ve lived for a full year without an organ that tried to kill me.  I have tried to look at every day with positivity and optimism but I can assure you all that not all of the last days were hearts, sunshine, and rainbows.   Majority of my days are great days but there are also days of challenge and frustration.  It’s hard to reflect on the past year without becoming overly emotional as it was definitely a year of personal growth.

I’ve learned that perspective is everything and it goes a long way. From the day I found out I was CDH1 positive, my perspective on life has changed and although I was optimistic before, I became even more so. It may seem odd to say that I became more optimistic when finding out I have a gene that puts me at a very high risk for stomach and breast cancer, but it’s the truth. I was given a choice to stop cancer before it stopped me. I also knew that feeling sorry for myself would get me no where so mine as well make the best of it!

When I have a hard day, Brandon reminds me that the alternative could have been a lot worse. It is all too true. When I look back over the past couple of years, I did have a lot of heartburn and the indigestion was worsening. I’m pretty sure that I would have died of diffuse gastric cancer if I did not remove my stomach. So, if I have issues eating, I just take a moment and try again later. If at first you don’t succeed, try, try again, right? If I had an issue rolling over in bed or lying down, just braced yourself and told myself that it will get better. When there’s a will, there’s a way. Any day I can get out of bed is a good day because there are so many people who cannot.

I’ve also learned that you should never take your family or friends for granted and that you are more loved than you know. I’m so thankful for all the support from family and friends during my recovery. Words cannot even come close to expressing how thankful I am for everything. Without friends or family, this year would have been a lot more difficult. I also developed a great network of new friends who also are stomachless due to CDH1.

I’ve struggled a lot with my work/life balance. Prior to surgery, I was a go-go-go person.  Even in the hospital I would ask the doctors when I could start doing this or that and they would remind me to take it easy because I just had a big surgery.  When I could not consume enough calories, was forced to cut back on my activities which was a really difficult thing for me to accept.  My body was telling me to SLOW DOWN.  I think the hardest hit was when I tried to up my work hours and then realized it was not working and had to cut them back down again.   Being a physiotherapist was and still is part of my self identity and something I really love doing. Cutting back was a difficult thing to accept and I am still working on returning to full time work. Thankfully, the company I work for has been incredibly understanding and I have been able to supplement my hours with administrative duties as I am now managing a few clinics in the company.

My energy level has still not bounced back to 100% and I am trying to push myself hard again because I’m not willing to accept that this is the way it’s going to be for me for the rest of my life.  It’s like when you first start to work out. At first you are really tired and sore, but once you push through it, you are a lot more in shape and have increased endurance.  I’m not back to normal yet, but I remain optimistic that I will get there if I just keep pushing myself a little bit at a time.

Although I’ve been told it is one year recovery post total gastrectomy, I know I’m still improving. I’m able to eat as much as you’d expect a thin person to eat and my weight is maintaining at a healthy 110lbs. I am a hobbit and I eat second breakfast, lunch and dinner. I have difficulties staying hydrated but I’m working on it. I’m always the last one to finish at the dinner table but that’s okay.  My baseball season just started and I was able to jump back into it as if I had never left (although I was sore for 3 days after…haha).  Thankfully, I’ve been able to return to the activities I participated in prior to surgery.

Living without a stomach is not a bad thing. It’s just different. Depending on how you look at it, it could be one of the best or worst things that happen in your life. No stomach, no problem.

The last meal my stomach ever contained

The last meal my stomach ever contained

Day 2 stomachless!  Feeling good with that pain pump

Day 2 stomachless! Feeling good with that pain pump

Hours spent in this area of the couch last summer

Hours spent in this area of the couch last summer

Realizing that my swallowing issue wasn't normal.  Stricture followed by a series of dilatations.

Realizing that my swallowing issue wasn’t normal. Stricture followed by a series of dilatations.

 

Breakfast 1 year post op. Takes about 20-30 minutes to finish it all.

Breakfast 1 year post op. Takes about 20-30 minutes to finish it all.

Incision 1 year post op - bikini worthy? Why not.

Incision 1 year post op – bikini worthy? Why not.

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