You can live without a stomach? – a 15 month update

I cannot believe that it’s already mid August.  Where has the summer gone?  This summer has definitely been an exciting one to say the least.

When I last visited the surgeon back in June, she mentioned to me that it would take 2-3 months to feel like I’ve returned to pre-surgery normal.  Well pre-surgery, but missing an organ sort of normal.  She couldn’t have been more correct.

As I mentioned last blog post, I changed jobs and started working at a new physiotherapy clinic.  I have been gradually building hours over the past six weeks and for this first time this week, I was able to put in closer to full time clinical hours.  It’s been a long time in the making and I’m pumped to say the least.

At work I am helping others get well but little do the patients know that they are also helping me return to normal as well.  Performing daily manual therapy on people as well as demonstrating a variety of exercises, has resulted in my body shape returning to pre-surgery form.  I am getting stronger as well as more lean.

I also try to practice what I preach and that means working on my own posture.  Often I find myself walking with forward head posture.  Essentially it means my shoulders are rounded forward, my neck in slight extension with my chin jutting forward.  This is something that has been stuck with me since surgery and I am now making a conscious effort to change it.  It stems from lack of core strength as well as not standing up straight for the month or two after surgery due to the incisional discomfort.  My brain learned that this posture was upright for me, when in fact, it was not.  When I stand erect it seems I am leaning slightly backwards but in reality I am upright.

Example of forward head posture on the right.

Example of forward head posture on the right.

Thankfully, as a practicing physiotherapist, I am able to give myself my own home exercise program to improve my posture. However, I would recommend that people who have had a prophylactic total gastrectomy see a physical therapist when they are cleared by their doctor to do so.  I believe it will reduce many problems that can creep up on us down the line.  I noticed at the “Spotlight on Gastric Cancer” event in April, that many of us had the same posture and I believe it is a result of surgery.

I often forget that living without a stomach is shocking to some people.  The other day I was in the vitamin aisle at the local grocery store and an employee asked me if she could help me out.  I mentioned to her that I was looking for vitamins that are easily absorbed because I was lacking a stomach.  The look on her face was priceless.  She said, “You can live without a stomach?”.  I wasn’t sure how to reply since I was very much alive and in front of her. Haha.  Its become a normal in my family as well as among my friends.  I’m part of a strong community of felIow CDH1 positive stomachless people and it becomes even more of a norm.    I have to remind myself of the feelings I felt when my mom first told my brother and I that she would be removing her stomach.   I speak of it so nonchalantly about it but to the general public, I guess it is a little bit of a wild thing.

I am happy to finally feel like I am returning to pre-surgery normal.  Looking back, the stricture really put me behind in my recovery, but there’s no point in dwelling on the past.  Just move forward and forward I will keep moving!







Post op week 5 update – Maintained weight!

Today marks the 5th week post op.  I think things really turn the corner for people after the first month.  I can see now why some people can return to work after 4-6 weeks post op.  For me this is not the case; however, I have started return to work talks with my employer which is exciting!

So here’s the break down for this week.

In terms of eating, I still have issues with ‘spitting up’.   It always makes me feel like I’m a bird ready to feed its young.  It’s not pleasant to see or do so you have to put some humour into it.  I will still take it over vomiting any day.  Food often feels like it gets ‘stuck’ just above my suprasternal notch.

If I leave it, sometimes it goes down but often it does not which leads to an inflammatory reaction where mucus is formed around the bolus and it starts to feel like I’m choking.  So usually, it’s best just to get rid of it and try again ten to fifteen minutes later. It happens about 1-3x a day.

On the brighter side, I found some great snacks made by Wellness Foods that are easy to digest and are low in sugar, high in protein and fiber.  I discovered them at the local Bulk Barn which has recently become a staple store over the past two weeks.  For the past two weeks I have been carrying around  “Simply Protein Crunch – Banana, Caramel, Cashew nut” since it gives me a hit of sweet without dumping.  I have also tried the “Simply Bar – Lemon Coconut” without any issues.  The bars break down to nothing when you chew them (similar to rice krispies) and they are easy to swallow and digest.  I have picked up a variety of other Simply bars and will try them out.  The bars are about average for a protein bar.  However, I have decided at this point, if I can eat it, I am going to buy it.   It’s all about maintaining weight right now.

Yesterday I started to experiment with the smoothies that are listed on the No Stomach for Cancer webpage.  I tried the Super Protein Power Smoothie with great success. It is nice to know there is something I can make and carry around with me to keep me fueled.  I hope to make a few of them and eventually try them all.  I didn’t use any Ensure though because it’s too sweet for me.

In terms of activity,  I no longer require my mandatory daily naps. In fact, for the past three days I have skipped it.  I am also able to stand in one spot for a longer period of time before I become winded.  When I’m sitting at rest, I don’t even feel my incision anymore.  I look forward to when all of my incisional tightness has subsided.

My back pain is subsiding as I continue to re-build my core.  I can’t do much but what I have been doing has been helping.  I tried to do a simple pelvic tilt today.  Surprisingly, it took me a few times to even figure out how to do it again and when I did do it properly, it was painful.  So I will leave it for another week.

I followed up with my family physician regarding my need for B12 shot and my blood work all came back normal.  This is great news. I know that eventually I will require a B12 shot but it’s nice to know that I’ve maintained over the past month with all my levels.  On another great note, I no longer experience heartburn, hives, irritable bowel, or stomach aches (obviously!) all of which I have been having for as long as I can remember.

So that’s about it for week five.  My life is slowly but surely returning to a new normal.  I am both looking forward and scared to learn about my pathology report on Wednesday.  I am 99.9% sure that I will have cured myself of stomach cancer but there is always that 0.1% chance that it spread to my lymph nodes.

Happy Canada Day weekend and Canada Day!