When I attended the No Stomach for Cancer conference in Philadelphia several years ago, we discussed how ironic it was that plain water is the most difficult beverage to drink. To this day, water continues to be the most challenging to drink since it easily gets stuck in my esophagus.
Rachael’s mom mentioned the surface tension of water is to blame. I can’t tell you if that is the reason, but I am a trial & error believer. Once I add drink flavor enhancers, I am able to drink water twice as fast without problems. I recently discovered Walmart carries a clear version. I like that they didn’t add any additional dyes, for whatever that is worth. 
A more natural alternative would be to squeeze lemon juice into water. Essentially, anything to break the surface tension seems to help.
Stay healthy and drink water my stomachless friends!
Oh my goodness! Ive thought I was nuts. Now I see Im not the only one with this issue.
I have found Zero Lemon by Gleceau is what Ive been able to swallow.
Im thrilled to know this is something that others have experienced too. Thanks so much!
Hi Marne,
I was recently diagnosed with the CDH1+ gene mutation. I have been reading your blogs a lot. You inspire me because you seem to have the same body type as I do. I also have always had a high metabolism and can lose weight easily (especially if stressed) but cannot put on weight as easily. This diagnosis scares me because I don’t have the extra weight to lose. I wanted to know how much you weighed before your surgery. I am going to try to put on some weight prior to mine. Will that make a difference? I still have to meet with the surgeon and have my endoscopy. I’m in the early stages but scared nonetheless.
Again, reading about all of the things you are doing and able to eat is an inspiration to me. Thank you for your blog.
Hi Jenny!
Thank you. I hope reading through my experiences can help ease the stress before going into surgery. My typical weight before surgery ranged from 115-118. I was 126 when I walked into my surgery. My surgeon believed patients were better served walking into surgery in full health over weight gain That being said, go ahead and eat a bowl of ice cream before bed every night before surgery and gain some extra weight. It is a long recovery where everyone loses 10-20% of the body weight in the first year of recovery. It’s nice to have extra padding so you don’t worry so much as the weight is coming off.
Blessings to you,
Marne
Thanks Marne! You give me hope. I was thinking of trying some Ensure Plus everyday to get some weight on, in addition to dessert at night. I’m so happy for all of your success thus far.
And Blessings to You too,
Jenny
Wondering if you tried the Ensure Plus, and if it bothered your stomach.
I stayed away from ensure because my nutritionist was worried about the sugar content. She did recommend boost glucose control.
I have been using the Ensure Plus. I have gained almost 7 pounds since I started it. I won’t be able to drink it after the TG due to the sugar.
I thought I was the only one who felt this. I have kidney stones for not drinking water. I’ll try to do what you said! thank you! My operation was in 2014, I was 23 years old. I already had the disease without knowing, 34 outbreaks of cancer.
I’m from Brazil.
Are you still okay??? Been sometimes since you updated!
I am doing great! Just busy with crazy life. (That is a good thing!) ❤❤
I’ve sent a message by messenger
Very interesting. I’m a little over 6 weeks out from TG surgery. Really going through some eating issues. I’ve started noticing that drinking water is a bit more challenging myself recently. I’ve been drinking more Gatorade, simply for the additional calories, so just lately have been drinking more water. I’ll definitely be trying out your tips. Thanks for some great posts. Also, I’m a recovering athlete, with several long distance endeavors in my past including several marathons (3:27 PR), HMs, many triathlons (including one full), and various other lengthy trail runs. I’m a native Texan, living near Houston, so if you’d like to keep in touch more frequently, let me know.
Hi Marne,
I recently found your blog and I have been reading on your gastrectomy experience to learn more about what I may be going through in the near future. I was diagnosed with FAP a few years ago, and in 2016, I had a total colectomy. That same year, I was told that my whole stomach was covered in fundic gland polyps. My doctors and I decided to keep close surveillance but the pathology report has changed and my diagnosis has become more aggressive. We are now discussing a full gastrectomy as a preventive measure.
Your blog is bringing hope back. As you can imagine, I’m sad, scared, stressed and anxious just thinking about going through another surgery to remove another part of my digestive tract. While I know people have one procedure or the other, I yet have to find someone who has had both; the stomach and colon removed. If you know of any other blogs or information out there in the web that I may not have come across yet, I would appreciate you sending it my way! 🙂
Thanks for sharing your experience so that people like me can be better informed and for inspiring us.
Hi Marne
I’m going through my 11 days post total stomach removal , and I’m devastated ; reading your block has giving me a little bit of hope . Having hard time facing my new life. I’m eating but not hungry , I get very bad cramps. This mornin I was thinking if its worth to keep trying. I have 1 daughter and a son and a husband that has been with me since day 1.
Hi Ana,
Take it one day at a time and slowly introduce different foods to see what agrees with you.
M
Hi Marne, I will be losing my stomach in a week or so , it is really assuring to read your story, I am quite older then you , but good health, so very optimistic that all Will be ok, i all ways consider myself as a Tuff Cajun , an I am in for the long haul .thanks for your continued work on educating folks like myself
We will be thinking of you. Hope your gastrectomy goes well. Just take it one day at a time through recovery.
Hi Marne, We recently found out that my mother has the CDH1 gene mutation (she has stage 4 stomach cancer). I am 33 with a young daughter. My husband and I are hoping to start my genetic testing process but we are at a bit overwhelmed about what sort of insurance we might want to look at for me prior to having the genetic testing since I may have a hard time getting various policies if my testing comes back positive. Any suggestions or guidance would be greatly appreciated!
Look into Genetic Information Nondiscrimination Act (GINA) here: https://ghr.nlm.nih.gov/primer/testing/discrimination. There are legal protections through here.
Hi Marne! I’m getting as much info as possible on gastrectomy, in case it’s necessary in the near future. I have GIST w/wild-type tumor so the only “treatment” is surgery. The MDA surgeon would prefer to do total — but I’d like to get by with partial gastrectomy if possible.
I’m 69 — and definitely NOT an athlete. Actually, I’m a slug! I’m going to start walking and also working out at the gym to build myself up as much as I can before I have any type of surgery. Of course, that will have to wait until the pandemic is over! But I have a couple of light weights that I’m just now beginning to use. Any thoughts?
The surgeon has downplayed dumping syndrome as not common in his experience with his patients. But, that’s not what I’m thinking from what I’ve read in various sites.
Also, I’m extremely concerned about malnutrition or malabsorption issues.
I appreciate your feedback. And do you know of any resources for info besides “No Stomach For Cancer”?
I so admire your response to your situation. And I appreciate your input and efforts to help those of us who are just now beginning this journey. Thank you!
Sheila
No Stomach for Cancer is the best non-profit advocating for gastrectomy patients.
For malabsorption/malnutrition, the doctors have some options. At one time, my doctor prescribed pancreatic enzymes to sprinkle on my food.
For now, my absorption seems good enough as long as I eat lots of protein at every meal and supplement daily a multivitamin, Vitamin D, and (specific for me and my age) iron. I personally experience anemia if I don’t supplement iron.
Everyone is different. I would find a good general doctor who will run a blood test to look at all your levels every year.
Best!
Marne
Hi Marne,
Your blog has given me hope. I’m a 62 year old male, in good health waiting for a TG. I have well over 100 fundic polyps in the stomach and some have become high grade displasia (cancer).
But I’m dealing with my desire to run post gastrectomy. I hope once I recover, I’m able to run in 5K races.
Please continue to update us on your journey.
Thank you Harvey! Be well.
I do need to add updates to my blog! All is well in my recovery. It takes time to get there, but it is ok to have a new normal.
Best,
Marne
Your blog has given me so much hope for a normal life post TG. I am 6 weeks post op and couldn’t have imagined being “normal” again until I read your posts. Thank you!
Elena Byrd
Hi Marne,
I’d like to thank you for your blog. My husband who is 60 will be undergoing a TG on November 10th . As I’ve been reading different articles to understand how to prepare for his life style change, your blog has truly helped me.
Again, thank you for sharing your experience and even though I dont know you, I’m proud of you for your accomplishments. You are an inspiration.
God bless,
Hi my name is Mary I had my stomach removed in 2019 and have been struggling to digest properly if I drink water after 10 to 15 minutes I pee it out I don’t know if it’s normal because I don’t have a stomach
Marne,
I am also enjoying your post as many are. I just found out I have the positive CDH1 mutation. yay! I do have the weight to lose, so I’m not worried about keeping weight on, they can have all they want. I plan to schedule a TG as soon as I get in for scheduled Mamm, colonoscopy and endoscopy. (in the next 45 days for all 3) I’m not interested in constant surveillance and want to be as proactive and preventative as I can be. I imagine I will also have a full mastectomy too after recovery, as I have used up all the fun reasons to have boobs, I’m ready to say goodbye. I see this as an adventure, I’m preparing for good, bad and ugly days, but I am annoyingly positive about the whole thing. Doing situps and walking more now to prep for surgery.
I just found your blog and found it so hopeful. I am not a cancer patient however I may have to have my stomach removed. I have severe gastroparesis and my stomach is no longer functioning. I have had a feeding tube for almost two months now and I have not been able to tolerate any food. My stomach won’t even process a popsicle. My specialist has only given me one treatment option beyond the feeding tube and that is the removal of my stomach. I started searching for information on what life might be like after the surgery. Thank you for sharing your story.
Hi Dorothy!
I am so glad you found the blog and found my story helpful. No one responds the same post recovery, but I found that stories from others who have gone through this helped me wrap my head around some of the unknown.
Best,
Marne