I wrote most of this post while I was still laying in a hospital bed taking a bunch of naps in between so please excuse spelling errors and ranting. Hopefully I won’t have to go through this again, but here are a few things I learned about my experience if there is ever a “next time”, maybe my fellow CDH1 friends can contribute a few of their own suggestions.
1. There is no way to make the NG tube comfortable so have your mind mentally prepared for this. This for me was probably the most uncomfortable part of the whole procedure. I mostly tried to keep myself busy. I like to know when things are going to happen, so I remember bugging my doctors about when this tube was going to come out. When they said, Monday, I knew what to shoot for… this did however, make Sunday, the longest day ever. Sunday, day 3 after surgery, was by far my worst day in the hospital. I was in a lot of pain, the tube was really starting to irritate the back of my throat and I swear, I could feel it scraping around in the inside of my “stomach”. Phantom pain? Perhaps, but I knew it was there. By Sunday it had been 4 full days since I had any kind of sip of water as well, so I was incredibly thirsty which did not help me in the attitude department. All that to say, I think attitude is how we win the war with the NG-tube. Never again. Goo.
2. Don’t bring too much stuff. You are so tired and drugged up that you will literally need to take a nap after reading a message or in the middle of writing a blog… (seriously, I took 3 naps during the writing of this post). I had my iPhone and iPad and that was really all that I needed to keep me entertained for my 1 week stay in the hospital. I don’t know how it happens, but by the time the third or fourth day came around I felt like I was on an episode of hoarders. I had 3 or 4 bags worth of clothes, multiple blankets, and lots of little things. Kate had to start taking most of that stuff home by Sunday.
3. Be in reasonable shape. The day after surgery they had me get up and walk. I walked to the charge nurse desk about 15 feet away and that was exhausting. They had me do that at least twice on day 1. They made me walk at least three times a day and do breathing exercises every hour which left me pretty tired. By the end of my stay though I could walk pretty far and do little laps around my unit floor. My wife Kate, who is a nurse, says that patients who walk after surgery tend to do better and heal quicker in the long run. It also helps to prevent things like pneumonia and blood clots. Back in January I made it a goal to run a 100 miles before surgery and I think that is paying dividends in my recovery.
(Insert nap number 3 here)
4. I’ll save the gore pictures, but be prepared for some to see some battle damage. I remember I woke up in the elevator right out of surgery and heard Kate saying to me, “they are all done, it went well, the scar is bigger than we thought.” I then remember picking up my head to look at the damage feeling like I was on fire and then falling back asleep. Things like coughing, sneezing, and hiccups feel like death, but it helps to splint yourself with a pillow.
5. Apparently weight that goes on fast comes off fast. Throughout the eating tour I put on about 10 pounds. The day I went into surgery I was 206.7 lbs. This morning, 9 days out of surgery I was 191.1. I’m supposed to level out and every day I feel like I’m getting a little better at eating. The first few days of eating were pathetic. It would literally take me about 4 hours to eat a single protein bar. Right now it doesn’t take too much to make me feel absolutely stuffed, but I find it helps to follow-up every meal with some warm tea. In the beginning, my body did not like some of the foods I was eating which made me really sick and incidentally gun-shy around trying new foods. One of the doctors from our surgical team explained it to me this way, “right now your intestines are ‘pissed off’… it’s not used to receiving any amount of undigested food and now you are asking it to change its role.” Well said, Doc, well said. Today, I’ve been trying new things and I find if my body doesn’t like something, it tells me pretty quick, so I’ll take a bite and wait about 15 minutes before I decide to continue. I figure if a big bites make me really sick, then a little bite will only make me a little bit sick.
Steve Dang 
Still loving you guys!
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Hi Steve, I hope that things are going really well post surgery. I was exactly the same in hospital with taking naps.. and not actually needing any stuff! I somehow accumulated bags of stuff which I didn’t even look at. I was really lucky not to need an NG tube but it sounds awful so I would’ve been the same with counting down for that. My happiest day in hospital (other than getting to go home) was when they disconnected my IV! Also, you’ll find that food gets much easier as time goes by. I’m just getting to the end of week 4 now and it’s crazy how far I’ve come in the last 4 weeks. Wishing you all the best for a speedy recovery and look forward to hearing your updates. P.S. I actually somehow managed to put on weight during hospital (imagine my surprise!!)… but it started coming off pretty quick after i left. I’m now maintaining a healthy weight 🙂 all the best! Kate
Hardest part is behind you Steve! Keep it up. Do you have a feeding tube?
Thanks! So glad that was the hardest part. I’m walking everyday and just trying to manage the pain. No feeding tube, thank God! Our doctor said that his total gastrectomy patients seem to do better in the long run when they just get us back on normal food as soon as possible. I for one, am not complaining, I heard the feeding tube was pretty bad too.
Cool. My doc does the feeding tubes. I didn’t have a huge amount of weight to lose though. It helped me bridge the gap especially during the first few weeks so I didn’t have to freak out that I wasn’t getting enough calories in. Though, by 6 weeks post op, it was annoying.
Keep napping and walking. I basically told my brother, if you’re not sleeping, you should be eating/snacking/drinking. It will get old, for sure.
And to help give my friends perspective, I shared that early on I could eat one of those lunchables… It’s only 240 calories and would take me an hour (eat half of it, feel filled to the brim…wait… eat other half of it). You might see if those go ok once you’re moving away from soft foods (though it’s pretty soft)…some protein, pretty easy to digest. Just make sure to chew the turkey really well. And like you said, take a bite, wait and see how it goes, then try another bite.
Also try cooking foods in soup. It’ll make stuff super soft. Just don’t drink the broth because it’ll fill you up and make you too uncomfortable. And for easy to chew calories, try cheez its.
I do have to agree with your doc… Your body is just pissed off at you after this surgery. It’s kind of saying that God had your digestive system setup the original way for a reason, and here we go altering it! But with time your body adapts. You can see how it’s baby steps forward everyday. That’s why I think the motto to this surgery recovery is “just keep trying” (said just like Dori in Finding Nemo). You need food to nourish your body and you have to keep trying to eat constantly to keep up.
Thanks for the encouragement! I had a good laugh just now reading your reply because I just got everything knocked back into perspective: It’s like day 10 post-surgery and I’m expecting to be back to normal already and running. 😒 just a weeeee bit unrealistic. Reading back through your early months has been a blast! New eyes on the other side for sure!
Oh yeah, that NG tube just sucks. My temperament was so much better after that thing came out. It’s uncomfortable & irritating.
Steve you are a trooper thanks for sharing your story. I had a big surgery several years ago that included a NG tube and Central Line. I pulled them both out un-knowingly within 24 hours. So glad God was by my side as it fouls have been a lot worse but he protected me throughout my entire hospital stay and treatment. Can’t imagine going through that all without him! Walk a little more each day and don’t forget to sit in the sunshine too. Bask in its warmth and gods love. All the best …
Thank you! I can’t even imagine what a central line would feel like… Goo!