It has been ONE WHOLE YEAR since I had my WHOLE stomach removed to avoid getting the same kind of stomach cancer that killed my mom and grandpa. Given an 83% chance of getting this cancer with only a 4% chance of survival if I DID get it were odds I wasn’t willing to put myself up against (especially watching the torment my mom went through). It’s been a fast year (THANK GOODNESS for NO major complications) and I couldn’t be more thankful. I’ve learned a LOT in this last year!!!
The night before surgery, I bawled myself to sleep. I was terrified!!! Why on earth was I having my WHOLE stomach removed when it hadn’t done anything wrong (yet)? How was I going to LIVE without my stomach? What if I was NEVER able to play with Paige the way I used to? What if I have to be off work FOREVER because I can’t catch on to life without a stomach? I knew EXACTLY why I was having my whole stomach removed…so I could be around for Paige & Sean without those crazy odds, but at that given moment, I was scaring myself silly.
If I knew what I know now at that point, I wouldn’t have freaked myself out as much. I read a TON of people’s blogs and experiences. I was prepared for the worst (most people write when something is going wrong and not when it, necessarily, is going well). However, I tried to maintain positive throughout the whole experience…I mean, THIS is what I needed to do to ENSURE I would NEVER be killed by STOMACH CANCER.
This whole year has gone WAY better than expected. Some days have been more challenging than others, but I wouldn’t expect anything less considering I lived WITH my stomach even before I was out of the womb and it’s quite the adjustment. I feel really good and if I had to go back and do it again, I certainly would…hands down, no questions asked. AND I would, without a doubt, have Dr. Michael Kendrick do my surgery, again. I truly believe that choosing the right surgeon affects your recovery and how well you do. Dr. Kendrick is nothing short of amazing!
I had my one year check up with my doctor on Friday. My only concern is that I am tired ALL THE TIME!!!! My labs look great, so it’s definitely not that. My doctor is thinking that maybe my food intake isn’t quite right. She is going to look into me seeing a dietician. I expressed my concern with making sure it’s someone who is familiar with total gastrectomies and GETS the TG world. One frustration many TG patients have, when seeing a dietician, is that they treat us like gastric bypass patients (things are similar in a lot of ways, but SO different in many, too) or they just print off info from the No Stomach for Cancer website (which we all already have read the ins and outs of and know that wonderful info already). We will see what she can come up with and hopefully she can find someone to help me with the intake of GOOD food….high calories, high protein, LOW LOW LOW sugar! Also, we talked about how much weight I have lost (120lbs) and how I don’t really want to lose much more, but would love to get on the train of working out. I was advised to try doing more weight lifting and less cardio…and really just less cardio all around unless I can be sure to have more intake of food. That’s going to be hard, but I definitely am ready to get going on muscle toning and building!!! Overall, it was a good appointment and I was glad that everything turned out well!!!
So, here’s what I know 1-year post- total gastrectomy:
-You CAN live without your stomach. I have to eat every 2-3 hours and smaller amounts at a time. Also, I try not to drink a whole lot WHILE I eat so that I can absorb the nutrients.
- Food=Energy and I can definitely tell when I haven’t had a snack in the right amount of time. It’s like hitting a brick wall of lethargic-ness. I’m really good about eating every 2-3 hours during the week, but on the weekends, when things are a little more hectic, I sometimes will forget and there comes that wall. With NO stomach, I don’t get hungry and don’t get full…so, my body will give me other signs that let me know I’m due to eat.
-Without a stomach, I have to chew, chew, chew…and chew some more since I don’t have a stomach to break down the food I eat. HOWEVER, I definitely don’t have to chew AS MUCH as I expected.
-EACH PERSON IS DIFFERENT- I think that’s just a general rule of thumb, but it applies, without a doubt, in the TG world. What works for one TG patient may not work for the next.
-Lactose Intolerance- After a couple months, I started to become lactose intolerant and I HATED it! My whole life, I have grown up drinking milk with meals and having that as a staple. Instead of letting it take over, I started eating more yogurt, cheese, and small cups of milk at a time and incorporating it more and more into my diet. The more I did, the less intolerant I became. I seem to have NO problems with this now and can even eat a DQ ice cream cone with no issues!
- Gas- HOLY NASTYNESS!!!! Gas is WAY more stinky post-TG than before. Not that I can help it, but this is pay back to my hubby for all the times he’s bombed a room with his stink!
-Alcohol- it takes a LOT for me to feel the effects of alcohol & most of the time, I feel nothing. Not sure if this is a BAD or GOOD thing? Just glad I’m not a big drinker.
-Sugar is the ROOT OF ALL EVIL!!!! Too much sugar (I can usually push it to like 25g of sugar/meal or snack) makes me feel straight up AWFUL! I get extremely light headed, dizzy, and just “off.” The way you feel DRUNK off of alcohol is the way I feel when I’ve had too much sugar! And a sugar hangover is 20x worse than alcohol hangover (this has only happened ONCE since surgery and I sure hope I learned my lesson….FOREVER).
- Weight loss- It’s a no brainer that you will lose a lot of weight post- TG. I was told to expect to lose about 15%. Well, that average does NOT pertain to me. As of today, I have lost 120lbs. I would say I gained about 50lbs before surgery ON PURPOSE, but did not expect to lose 120lbs and be in a size I don’t even remember being in back in high school. Working in a dental office, we generally see our patients every 6 months. 6 months ago, people didn’t say too much, but within the last couple months, patients don’t recognize me and ask if I’m new here or they are shocked it’s me when they get in front of me to check out for the day. It’s quite humorous and always comes with my story because EVERYONE wants to know how you lost so much weight and how they can do the same. Although, it’s easier than I expected, I wouldn’t tell just anyone to go out and get a TG. Ha! I’ve even run into friends I haven’t seen in a long time at stores and they will just walk right past me until I stop them.
-Vitamins- These little guys are MY LIFE. Without vitamins, I would probably be close to nothing. I take a LOT of them and it’s a good thing. In the beginning, I was having my doctors nurse give me my B12 shots. When I took over, I wasn’t very good at giving myself my shots. Within the last 4 months, I’ve perfected it….THANK GOODNESS….and it’s a piece of cake! Flinstone Vitamins were DELICOUS as a kid….they are DISGUSTING now. When I take a Flinstone vitamin, I have to chew it along side one of my Tums (for calcium) in order to bare it. The rest of my vitamins are manageable, but the Flinstones might get kicked to the curb if I can find some other chewable multi-vitamin WITH iron that tastes better.
-Tylenol- It is HIGHLY suggested to not take NSAIDS after a TG as they can cause ulcers in the intestines. This is per my medical doctors at Mayo. I was HORRIFIED by this before surgery knowing that Tylenol didn’t work AT ALL before my TG, but for whatever reason since my TG, Tylenol works WONDERS!!! I don’t take it very often and usually wait until it’s bad enough that I can’t stand it, but when I do….my problem is solved.
-Bloating- I have never had a bloating problem before, but wow oh wow is that an issue now. If I eat too much I bloat IMMEDIATELY….literally look pregnant. I would venture to guess that I gain about 2 pant sizes when this happens. Why does food sometimes have to taste SO good and why can I not help myself?
-Something that works this time may not work next time. It’s all a guessing game. For example, I had a bowl of soup on Saturday and had NO issues. Now today, I had that same bowl of soup and roughly the same size and it sent me straight to the bathroom. This happens a lot with different food items. I had considered, in the beginning, keeping a journal of foods I eat and how they make me feel. However, after realizing that one day something works, the next it doesn’t, and the next it works, again, that I would be wasting my time. I will say that Papaya Digestive Enzymes have been a life saver, though. The Creon is SO expensive, even with my insurance, so I started taking these. They taste good AND on foods that usually cause my gut to HURT, they help so there is no pain. It’s like a yummy dessert for me since most sugary things and I are not friends.
- Snacks- Most girls carry a purse….I carry a purse AND a snack bag. I don’t go to many places without my snack bag. I never want anyone to feel like they have to feed me….let alone, feed me EVERY 2-3 hours. This has come in handy more times than I can count. Even just when running errands, it’s nice to have my snack bag with me because like I said before, food=energy and If I want to keep on keepin’ on, I need to snack….ALLL.DAYYY.LONG!
Last, but CERTAINLY not least……… -TG Community/Family- I am SO thankful for the total gastrectomy and the No Stomach for Cancer community. This little community is SO uplifting and helpful. It’s like a small family and each person is there for support, love, and to build each other up. If I had to PICK any community to be a part of, THIS would be the community and family for me.
So, it’s been one year without a stomach. It’s still crazy to hear and say that I have NO stomach, but because of how well I’ve adjusted to my new life and how great everything is going, I feel I couldn’t be more blessed. The CDH1 mutation can cause a lot of stress and can be an emotional roller coaster, but this quote couldn’t be more true…”When you wake up every day you have two choices. You can either be positive or negative; an optimist or a pessimist. I choose to be an optimist. It’s all a matter of perspective.” – Harvey Mackay
I, myself, choose to be an optimist!!!
It's the little things in life...I usually have to go to the pharmacy and pick up my B12 shot MONTHLY, but my refill for the next year allows me to pick up THREE months worth at a time!!!! This made my WHOLE day!!!!
I am SO thankful for the care I received at Mayo, Rochester,
MN.I will say time and time, again,
that I think they are THE BEST and this just shows it.Their GI and surgery team are PHENOMENAL!!!!I truthfully don't think I would be doing as
well as I am today if it wasn't for their OUTSTANDING care!!!
"Mayo Clinic was No. 1 overall in the magazine’s annual Honor Roll ranking of its Best Hospitals list. Mayo Clinic also ranked No. 1 in six specialties: •Diabetes and endoc...rinology •Gastroenterology (GI) and GI surgery •Geriatrics •Gynecology •Nephrology •Neurology and neurosurgery"
Sorry I haven't written in awhile!!! We were staying at a campground with limited WiFi until our house was done being built. We moved in last week and are finally starting to get settled, so hopefully I will be able to write a little more!!
A couple months ago, I was having the issue of being awoken during the night to what seemed like food sitting in my throat almost. It wouldn't choke me or cause me to not breathe, but it was annoying and I couldn't go back to sleep until it settled. I had read about trying to drink soda or try eating something acidic to get the pH levels to balance out. These things were not helping. I would have to sit STRAIGHT UP for at least 2 hours for that feeling to go away.
I, finally, called my doctor down at Mayo. She said that this is NOT uncommon for TG patients. You don't have a the flap on your stomach that keeps your food in anymore, so essentially, the food is creeping back up my new tubing. My doctor gave me a prescription for Carafate and Cholestyramine. Carafate is a liquid you have to shake like crazy in the bottle and can take before bed or when awoken. The Cholestyramine is a powder you add to water and drink before bed or when awoken. Neither of these will totally get rid of that happening, but will help to avoid it. She said to start with the Carafate and see if that helps. If not, take the Cholestyramine. She, also, suggested trying to eat 80-60-20 throughout the day. So, the majority of my food would be in the morning, a little less through the afternoon, and even less at night. She really pushed NO eating or drinking 2 hours before bed. I will say that the way my day goes with eating, I probably do the opposite 20-60-80, but I have been REALLY watching my eating before bed and try to have my last snack 2 hours before going to bed. This seems to have REALLY helped!! Also, staying propped at night and making sure my head doesn't lay even with my gut helps. I have only woken up 2 nights from this since given my new scripts. The Carafate has done the trick (thank goodness) those two times and doesn't taste too bad at all. The Cholestyramine LOOKS terrible, so I'm hoping I never have to take that!!! HA!