Thursday May 22nd, 2014 – This was the last meal with my stomach – Fish and Chips with Mushy Peas. See below.
At the time it seemed like a great decision and it was delicious. I regretted this decision two days later when I experienced the worst pain in my life due to gas build up in my abdomen. I failed to remember the advice from the pre-op nurse, “eat a light meal before surgery”. Good thing I didn’t go to the Mandarin!
Fast forward to post op day 26. This is what I thought I could eat for my afternoon meal. It was lunch #1. I eat like a hobbit now. Breakfast, then two hours later, second breakfast. Two more hours pass and it’s lunch, and then second lunch and so on. Some of you may be wondering, will it always be like this? The easiest answer is yes. But life can get in the way and as you recover it is easy to miss meals which then results in weight loss.
Left over grilled chicken with grilled veggies and macaroni salad on a small bread plate. I have learned over the past week that left over grilled chicken breast is not a good choice. I eat my food with a three strike knock out rule now. If it gets stuck on first attempt, I blame myself for not chewing enough. Stuck again, I blame myself for eating too fast. The third time it gets stuck, I remember to not eat it again for at least another week or two. After thirty minutes, I was able to eat all the grilled veggies and two macaroni noodles. The eyes are bigger than the stomach…..well in this case, small intestine?
I have spent the last week trying to decide what to blog about this week and I have decided to put more detail about the actual recovery (diet, activity, etc). I found that comparing my progress to other CDH1 bloggers helped to normalize my recovery. I know that everyone is different but it still is better than having nothing at all.
Going into surgery, I believed my best friend next to the surgeon would be my dietitian. I was wrong. Although the dietitian was helpful for basic information like adding calories to meals, overall, much of the advice I have been given has not been helpful. I learned this early in the hospital when I decided to take a lactaid pill before drinking some milk on the dietitian’s recommendation. The next half hour I paid for it by having intestinal gas cramps for the next thirty minutes. When inquiring about how fast I should be eating one cup of my beef consume I was told that I should be able to finish it in fifteen minutes. At the next meal, I attempted this and paid for it again. Most of the answers I have been given by the dietitian is try it out and see what happens. It is not the dietitians’ fault for giving this advice, it’s just that there isn’t a lot of research out there on post prophylactic total gastrectomy recovery. In my opinion, it’s something that is hard to give advice on unless you have actually experienced it. The best advice has come from reading other CDH1 blogs as well as speaking with my mom who had the surgery just over 4 years ago.
I’ll just put a disclaimer here that I am not a registered dietitian and that this advice is just based on my own personal experience.
Here is a list of foods/drinks that I have found easiest to eat over the past two weeks being at home:
- Cashews – full of iron and protein. Very portable and easy to just much on
- Activia Yogurt – filled with probiotics and protein. I have also combined this with some orange juice and froze it to make yogurt Popsicles for a quick snack.
- Cream of Wheat – also has some iron. Mix it with lactose free cream as well as milk (or almond milk)
- Hummus – I dip saltine or ritz crackers into it. I have also dipped grilled veggies into it. I loved it before surgery and I love it even more after!
- Kozy Shack Tapioca pudding – It has a higher sugar content so don’t eat too much but great for a sweet treat
- Split pea soup
- Pizza and potato chips
- Cheese and deli meats
- Frozen Banana “iced cream”
- Water with a shot or two of orange juice
Here is a list of big wins for me this week that I would not necessarily recommend but I was super excited about to put back on the menu:
- Lettuce and Spinach in a salad – No more constipation! Haha
- Peanut M & M’s – YESSSSS!!!!!!
- Iced Coffee – made with cream and almond milk
These are foods/drinks that caused me issues:
- Left over grilled chicken
- Ensure Plus
- Plain old water
In terms of pain management, I decided to stop taking Tylenol on Monday. I stopped for two reasons. I don’t like taking medication and I had been taking it for three weeks non-stop. It was great because it helped me move but I also started to over do it in week three. I decided that my pain level was enough to tolerate without medication and it would be a good indicator of overdoing it. I am a big advocator of movement but I am also someone who will over do it and at this point the Tylenol was hurting versus helping. I have been able to continue doing as much as I was able to do before with the Tylenol so this was a big win for me.
I still have odd pains around my abdomen every now and then which I attribute to nerves regenerating. I am also numb about 5-10mm on either side of my incision. I have a 70mm diameter circle that is numb to the left side of my belly button. I have been working on helping the nerves regenerate by rubbing my hand around the numb areas as well as using a soft blanket on the sites for about 2-3 minutes a few times a day. I have not started any scar tissue mobilization as areas are still healing and the surgeon recommended I wait until follow up (July 2nd) before I start to friction it or use any therapeutic ultrasound to heal it.
When it comes to activity I continue to make great gains. This is my first week home without Brandon and I am doing well. My mother in law and mom have been able to take me for outings as I am still not driving. I was able to tolerate a trip to value village to look for some new clothing. At this point it’s not worth purchasing brand new clothing because I’m still losing weight and I don’t want to have to replace it again in another few months. Trying to find my size was an adventure but I figure I now hover between a size 3-4. I used to be size 6. Moving the clothing on the racks was difficult but I managed. I always take a shopping cart with me on outings because I am able to last longer. I currently sit at 112lbs.
I am feeling well enough to feel frustrated that I am not allowed to lift anything heavy. It is amazing how many things you lift that are over 10lbs in your day. I am looking forward to having my lifting restrictions removed so I can start to seriously strength train my core. Which leads me to my next point, I have started to wake up with back pain and if I am walking for a prolonged period of time, I also have back pain. Yesterday, I started to do some gentle Transverse Abdominus/Multifidus training while lying on the couch. I was able to do 2 sets of 5 heel slides before I was fatigued. Lame. I think in a future post I’ll talk about my personal post op rehab as I feel that my physio knowledge has lead to such a fantastic recovery thus far.
Standing in one spot continues to be difficult. I still find myself breathing apically when I am standing upright and need to remind myself to diaphragmatic breath because I can get light headed. Flexing forward always improves breathing and now I fully understand why this is the resting position for people with respiratory issues.
I still require 1 hour naps daily to regenerate. I am getting around 8-9 hours of sleep a night which is great for healing. I am dizzy and light headed anytime I go from sit to stand. The first few steps after getting up I always have gas which feels like a burp ready to come up but doesn’t.
There are activities that I have been missing this week like rollerblading, swimming, and going to the gym. But, life is good. I don’t regret my decision. You have to make the most of the cards you have been dealt. I will get back to those things in good time. Just think, 27 days ago I looked like this: