It’s been nearly one year since the partial gastrectomy to remove the tumor in my stomach. I thought that I’d share a summary of my experience over the past year for those who might be facing a similar surgery. There are many personal accounts online from those who’ve undergone gastric bypass but for those of you battling stomach cancer, here is my story…..
In October 2007 I learned that I had cancer. The diagnosis was non-Hodgkins Lymphoma, stage 2E, grade 1, presenting as a tumor the size of a lemon in the upper portion of my stomach. Aside from a couple of adjacent lymph nodes, the cancer had not spread. I had four treatments with Rituxan in December 2007 but this had only a minimal affect on my tumor. In the spring of 2008 I went through six cycles of R-CVP with similar results so surgery was planned for October 2008. On October 8, 2008 I had a partial gastrectomy with vagotomy and pyloroplasty to remove the tumor in my stomach. The removal of the tumor resulted in the loss of the upper third of my stomach along with the vagus nerve that ran through my tumor. The top of my stomach was closed and my esophagus was reattached to a new hole that had been made in my stomach. The esophagus was stapled to the stomach from the inside through a hole in the pylorus. I was hospitalized for a week following the surgery.
The biggest change following the surgery, of course, was the reduced stomach capacity. I couldn’t eat more than a handful of food at a time so it was necessary to eat many small meals throughout the day. The main thing that I wanted to know from my doctors was “Will this improve? Will I be able to eat normal meals again?” I was told that my stomach would gradually stretch and that “a year from now you’ll be able to eat more normal meals”. A year later….I weigh 115 pounds, I’m a size “0″ and my stomach capacity has grown a bit, perhaps, but I still eat very small meals throughout the day. Some days I’m able to eat a bit more than others but, in general, I feel much better if I eat no more than a cup of food at a time. I have to constantly think about what I eat and how much I eat and “The Daily Plate” on Livestrong.com has been a great tool to help me track my nutrient and calorie intake.
What I’m able to eat has also changed since my surgery. If you want to know what dumping syndrome is, just drink an “Ensure” after your surgery….you’ll find out shortly after. I eat nutrient dense, calorie dense foods in order maximize nutrition and calories. I eat whole grains (farro, bulgur, etc), sprouted grain bread (Ezekial 4:9), beans and legumes, seeds and nuts, and fresh fruits and vegetables. Fortunately, I was a pretty healthy eater prior to my surgery so this wasn’t a huge shift for me but there have been a few major changes. I’m now lactose intolerant and while I can get away with a little cheese here and there, yogurt and milk usually lead to dumping. I have a very low tolerance for sugar and simple carbs now, too, so…..no ice cream, no cookies, no pastries, no crackers, no processed foods. Half a dozen M & M’s can send me to bed for an hour with dizziness, nausea and a racing heart! I used to LOVE coffee but I only drink green tea now. I also enjoyed wine prior to my surgery but I can only have a sip or two now before I start to feel the effects. It’s best to keep solids and liquids separate to avoid dumping food into the intestines too quickly. And, of course, there can also be motility issues that cause things to move too slowly. For this I take 200 mg magnesium at night (this also helps insomnia). It sometimes seems like the list of things that I can’t have is longer than the list of things that I can but I’m getting used to it. In general, my stomach capacity and what I can eat have improved little over the past year
When my esophagus was reattached, a stricture formed, making it difficult to swallow my food. While the problem actually occurs where my esophagus joins my stomach, I feel it as tightening sensation in my throat. In order to correct this, I’ve had my esophagus stretched several times. I also developed an ulcer in my stomach near the esophagus, likely due to a weakening of the microvasculature in the area caused by the surgery. LOL! At least, that’s how it was explained to me….I’m not a medical expert, I just live with this stuff! 
The good news…..a year later and I’m cancer-free. I’m 47 years old and I’m a size “0″….and I feel pretty good about the way that I look! I miss coffee, wine, yogurt, pastries, cheese and crackers…..heavy sigh….. Now I snack on almonds, or lentils, or tabbouleh…..it’s just not the same…..
I am getting ready to have this surgery due to ulcers and I found your posting very helpful. Thank you so much for posting it. Also Good Luck and God Bless!
I am 46 years old and I too have had this surgery – 32 years ago when I was 14.
I had ulcers and nearly bled to death in the hospital before the surgery. Thankfully I had an excellent surgeon and am happy to be healthy and alive today. The botton 2/3 of my stomach, the upper half of my intestines, and my vegus nerve are all gone.
All of the symptoms you’ve described are still with me today. Although I’ve gained to a slim but healthy weight over the years and have figured out how to maximize my bodies ability to retain nutrients. Grazing on high protien and low carb foods, vitamin B injections, and naseau meds are a way of life. My life is planned around my need to graze on specific foods at specific times; however, it has not impacted my ability to live a happy and productive life. Every bag I own contains a pack of peanut butter crackers and a box of OJ in cases of emergencies.
Best of luck to you, Carrie. I hope you find your recovery and life very satisfying as you heal. I’m happy to chat anytime and share experiences with you.
Carrie M.
Bolton, MA
I just stumbled onto this website and I am so glad that I did. I am going to have this surgery next week, as soon as I have an ERCP to determine if I have cancer in my pancreas as I have been having pancreatitis attacks and pseudocysts on my pancreas and the pain is horrendous, I also have pruritis and I itch my body raw! I also have a hiatal hernia in my esophogas and my stomach is completely ulcerated and the doctor fears that my small intestines my be ulcerated also. I have not been able to eat many solids for about a year so I eat alot of ice cream and have gained alot of weight so the weight loss part is the bright spot in this surgery.
I would like to know how painful this is, how long does it take before you can function and how long does the weight loss take?
I just stumbled upon your website and wanted to share my experiences with a similar surgery.
I was diagnosed with 3 GIST tumors in my stomach last March. Each one was about the size of a golf ball and they were spread along the back wall of my stomach. After talking to several experts, I decided not to try the treatment to shrink the tumors and just get the surgery. I had a partial gastrectomy last May leaving me with about 25% of my stomach.
I am a 24 year old female probably about your size (5’4, 117 lbs), but I was around 130 before the surgery. I eat many small meals throughout the day and I feel like I’m constantly nibbling on something. I do have dumping syndrome when I eat too much dairy or sweets before protein. I’m okay most dairy products, but ice cream is tough for me to handle now. The dumping for me doesn’t happen very often and at this point I know what will trigger it and how to avoid it for the most part. I agree that I don’t feel much of a difference after a year though. My weight has stayed pretty stable since the surgery, but I don’t foresee many big meals in my future.
Other than these changes in diet, I feel great and very healthy. I was also in the hospital for a week post surgery and pretty weak for a month or two after. Now, I have a full time job, I exercise, and I live a very normal life. Sometimes even forget that I even had surgery (minus the big scar down my abdomen).
Hope that you are well. Thanks for your post, it’s nice to know that their are others out there going through similar experiences.
Hi Kim,
I just had a gastric partial surgery due to gist this Oct. 2011 and it gives me hope to know other had this experience and leading full independent healthy life.
Can you please tell me what medications were prescribe for your gist
Hi Glenita & Everyone,
I too have GIST and had extensive surgery this past Nov. of 2011. The feeding issues with resulting pain continues on most days. Best of luck to all of us to regain a good life. Bon appetite one of these days!
Hi Glenita,
How are you now?I’m scheduled for the same surgery due to a gastric mass this November. I still don’t know what it is as the endoscopic ultrasound to biopsy it wasn’t covered by my health provider.My doctors said that it’s still needs to be removed surgically regardless if it’s benign or not so we will proceed with the operation.then it will be checked in a traditional way of biopsy to be covered by my healthcare provider.
I am hoping that you could give me some enlightenment not to get scared or worry about it.
Many thanks,
Gwen
Good luck with your surgery, Gwen. When is your surgery scheduled? Where is your mass located? Please let me know how you’re doing and let me know if you have any questions or concerns. Three years later, I’m doing well. There are some dietary adjustments to be made and some lifestyle changes but you’ll learn to adapt. Please stay in touch…I’ll be thinking of you! Carrie
Hi Carrie,
Thanks for replying.I might have the surgery on Nov 24 or 25th. it’s in the uppermost right part of my stomach near the esophagus. Until now i still can’t believe that i have to undergo surgery, I got so depressed when i found out about it in September.I don’t feel any sick symptoms aside from too much burping which is tolerable and doesn’t last long. I still even go to work and do things i normally do except for smoking and drinking alcohol.I’m only 28 and the breadwinner of the family, no kids no husband. Most of you said that you’ve been weak for a month or two so that makes me feel alarmed. when can i go back to work?I really need to keep a job.Will it take me a year before i can truly say I’m finally okay? I’ve been reading and doing some research if there’s any medication to shrink it but i guess surgery is the only way. I’m even thinking to reschedule it till next year coz it’s soon to be Christmas time and it will be sad for my love ones if anything happens to me on the table. I guess I think and worry too much..I’m a paranoid!
After weeks of depression, with the help of my family and friends I was able to regained my own self and learned to depend everything in faith. I feel much better now waiting for that day. I try to remain calm and positive towards everything that’s happening in my life right now. I know God has a plan. Sometimes i still feel anxious and worried but it doesn’t last all day. I always turn myself to pray whenever.
I’m glad that there are people like you whom i can talk to about this matter. It gives me hope that everything will be just fine and we can all surpass this.
God bless us all and take care,
Gwen
Hey Gwen-
We are some pretty strong women, continue to talk with the Lord about ALL your concerns-I promise he will direct your path, I am a witness-he’s done some amazing things since I’ve been diagnosed with NHL. Please trust him.
Thanks Lois for replying, God bless you.
I wanted to share my story because I am still going through a terrible time and it is 14 months since my surgery. I was diagnosed with a gastric ulcer in January 2010. It started with having a viral infection pylori H. When the infection was gone from my stomach, the ulcer remained. I was given protonix to hopefully get rid of it but it did not work. After 4 endoscope’s, my gstro doctor sent me to a surgeon because she said it had to come out. The surgeon explained that the way they remove it was to cut the intestine because it was in the lower part of my stomach and then to take 1/3 of my stomach where the ulcer was and then reattach the intestine. He was to take the gall bladder because it showed many polyps. The surgery was to be about 2 hours. Well, the surgery ended up being almost 5 hours and my poor family waiting and no one came to tell them what was going on. I was also to be in the hospital 6 days and back to work in about 6 weeks. Well, problems started immediately when they could not take the drain tube out of my stomach that came up and out my nose for 4 days because my stomach and intestine did not seem to be working right. I was in ICU 6 days and then transferred to a regular room for 4 more days. The pain was unbearable and my bowels did not seem to want to work either. Doctor ended up telling me he did not take out my gall bladder because he said it was fine when he looked at it. He said the surgery went so long because when he got in there, he could not find the ulcer and had to call the gastro doctor to come to the operating room to help him!. I finally went home and could not eat anything but liquids. I kept going back complaining of pain but he kept telling me to wait. I was out of work over 2 months and then back only half days for 2 months because of the pain. In April 2011, I started to lose weight, I could not eat so much because I was sick and sugar was my worst enemy. Dairy started to make me very sick. My diet was so limited. I started losing weight fast and was scared. I went back to my primary because the surgeon did not want to even hear anything and answer was wait and see. My primary was shocked. and immediately sent me to another gastro dr who looked at my records and could not believe what had happened to me and the fact that the other surgeon had actually cut me open to do this surgery and it could have been done lapaoscopic instead. He did some tests and sent me to another surgeon and the consensus was surgery was not done correctly. Instead of taking 1/3 of my stomach he took 1/2 of my stomach to this day I do not know why. The gall bladder that he said was fine is worse and now I have gall stones. My bile duct was damaged and instead of acid reflux that I could otherwise take medicine for, I have bile refulx so when I have a bad bout, the bile comes up into my throat and burns bad. Some nights I have to sleep with 3 pillows to be comfortable. I have gone from 174 pounds to a mere 100 pounds. I saw a doctor at the Mayo and he said the surgery was horribly wrong for me and my body rejected it. Since I have little stomach, my stomach does not have time to digest food to make it mushy before going into the intestine and it tries to push the food through too quick which makes me very ill and it is painful. I have to essentially start with mushy food like mashed potatoes, apple sauce, baby food which is horrible but I have to adapt. I also have pain in the abdomen and found a lump which I am about to go to a surgeon to see what he thinks. I had blood work done and I have major deficiencies but because the portion of my stomach that absorbs vitamins is gone, I cannot take medicine like others to correct it. I am severely anemic and not sure what can be done. It has been a nightmare and now the thought that this lump could be cancer is scary. I am being sent to the cancer center and have an appointment there soon. It has totally changed my life and I said I did not ask for this. I knew I would lose a little weight but I am nothing but bones. People ask me if I am anorexic and that hurts. I buy clothes in the little girl section because smallest junior size is too big. I was recently put on anti depressants to handle the severe change. As with anyone who loses a lot of weight, I now have a lot of excess skin on my stomach arms and legs that I hate. What do I do? I go on and take day by day. My advice to others? Dr. at Mayo said that the protonix is not something that every body can absorb and they should have tried other medications before cutting me open. You tend to trust your doctors because they know better, In this case, it was not the case. Get another opinion from a gastro doctor before letting anyone cut you open and ruin your life as you know it.
Thank you for sharing your story, Julie! It’s now 3 1/2 years since my surgery and like you I work each day to maintain my weight and get enough nutrition. Like you, I now have problems with sugar and other simple carbs, dairy and gluten. When I eat more than a cup of food, I get sleepy, my speech slurs, it gets difficult to concentrate. I’ve taken the maximum dose of Protonix since my surgery to prevent the burning rise of acid in my esophagus that is so terribly painful. I’m 50 years old and I have to buy my jeans in the teen stores. I’m a svelte, 110 pound, size zero/double zero and women my age look at me enviously or as if I’m anorexic…as if I could eat like a bariatric/gastric bipass patient. I can’t. I wish that I could. It would make life so much easier socially…to be able to go out and eat with friends as I used to. I can’t. It would be nice to be able to eat more at work but I can’t. For nine hours I can only nibble to keep my blood sugar up.
I developed epilepsy 4 months after my surgery and I take medication to keep the grand mal seizures under control. No cause for the epilepsy was ever determined but I believe that it was related to the hormonal changes caused by chemo-induced menopause coupled with the difficulty in maintaining blood sugar levels with my new digestive system.
I appreciate your frustration with the doctors. My primary doctor is not terribly helpful in seeing the big picture…the overlap among the specialists. And each of my specialists, my oncologist, my neurologist and my gastroenterologist all see my symptoms within the scope of their own specialty. In my doctors’ defense, my symptoms (fatigue, dizziness, lack of concentration, sleepiness, nausea, dry mouth, etc) could be caused by my medications, my condition or by some yet undiagnosed condition. Or, as I’m often made to feel….I could just be a hypochondriac. (rolls eyes) I was always very healthy before I developed non-Hodgkins Lymphoma. I never got sick, never worried about my health. My surgery has change all that.
I’m glad that you went to Mayo, Julie, and I hope that you’ll stay in touch and let me know how you’re doing! Thank you for sharing your story with me and everyone who reads this blog!
Carrie
Carrie
I certainly can understand what your feeling. I wish I could say things are better but they are not. I have not put on any weight still cannot eat much of anything. Cannot have sugar as it causes more gas in my stomach which makes the bile refulx so much worse. I now have two lumps in my abdomen really painful sometimes. I found out that my iron count is at 5 and should be over 40. My B12 is very low so started giving myself shots as I cannot take pills by mouth because they will not absorb, that portion of my stomach is gone that would absorb them. I also have to take folic acid which is also very low. They want to do iron IV fusions two times a week and that scares me because I have not read very many good things about the iron iv fusions. I am frustrated with the doctors and especially the surgeon. He told me he has to go in and reroute my digestive system and have the bile going down instead of coming up into my stomach and causing the refulx. It is a major operation and right now with the deficiencies in my body it is really risky. Recently I went back to the surgeon and it was almost like he could not remember who I was and said “I do not know what the other doctor did but maybe he did this”. He proceeded to draw two different pictures then drew 3 other pictures that he said were possibly what he could do. I almost felt like he could not remember talking to me before. Then I had an ekg earlier in the day and it was abnormal. I asked him why and he said my heartbeat was very slow about 47 and he asks me why it was low. Like how was I supposed to know. Then I asked him why I had this tremendous pain and the lump in my abdomen. Initially he said he thought it was excess scar tissue left in from surgery. Then another appointment he told me it was a arota anyerism. Last visit he tells me he thinks it is caused by the excess bile in my abdomen and it is inflaming the lining of my stomach and causing pain. The hard lump I feel is supposed to be inflammation of the lining of my stomach? I ask what can I eat well response to that is trial and error. If it bothers me don’t eat it again. I had to tell him we were not proceeding with the surgery as long as my body had such deficiencies. He said that probably would be a good idea because the surgery is dangerous and my chances of successful surgery is 70-30% not in my favor right now. I left that office so dismayed. My plan, is to get copies of all of my records prior to the surgery, during the surgery, and everything after the surgery and all tests. I am going to call Mayo and get an appointment with a gastro surgeon. I am sending him all the records and will go down and ask him after looking at all the records what needs to be done. Have a surgeon recommended back here and bring back what he tells me needs to be done. I should not have to do this but I am so disgusted, my quality of life has been so impacted. It is so difficult to go somewhere and have a meal because I know it will probably make me sick. I live day by day and putting it in God’s hands.
I will pray for you because you have so much going on and I feel terrible for you. I hope that in 2 years or so we can look back on this and know how much we went through and the strength we have to endure this. I have found that having the support of family and friends is so helpful. I am always here is you want to talk. I will keep you in my prayers.
Julie
Oh Julie…
LOL! I smiled and chuckled to myself as so much of your story sounded so familiar to me. Not that it’s funny, of course, but I smiled at the shared, common experience that I know so well. Life is not easy for either of us. We struggle with symptoms that make ordinary life difficult; symptoms that are sometimes vague or difficult to attribute to a specific condition or medication. In the short span of a 15 minute office visit, the specialist is unable to attribute the “complaints” to a cause and we feel dismissed as a “hypochondriac”. We see multiple specialists but no one seems to communicate with each other and heaven forbid that our files should be given to us (for fear of litigation) and yet when we visit a new doctor we’re expected to be able to regurgitate all that has been done before…and when…and why…and how. Such is health care in America.
Like you my iron levels are low (also around 5) and I try to take supplements to keep my iron levels from falling too low. So far, my B12 levels are ok but they are being monitored. Like you, I have an aortic aneurysm…cause unknown…and I have concerns about the strength of my heart due to dietary insufficiencies related to my stomach capacity, low weight, and subsequent inability to engage in exercise that would burn precious calories. I have been diagnosed with osteopenia and I worry about my bones and teeth given both my dietary restrictions and the medication that I have to take which reduces calcium absorption and contributes to bone loss. I haven’t seen my gastroenterologist for a couple of years but would like to check the condition of my stomach and esophagus. Unfortunately, I’ve exhausted the funds in my FSA and will have to wait until fall before scheduling any more medical appointments.
Those are the challenges that we face but, as I tell myself each day…everyone has challenges in life and there are others who face a much rockier path through this life than I do. I get up each day, put a smile on my face, and “Rejoice Always” (1 Thess 5:16). One of my favorite quotes is from Isak Dinesen (Out of Africa): “Here I am, where I ought to be”. I was placed on this path for a reason and my purpose is to find that reason and to make the most of my time while on this path. I will pray for you, too, Julie, as you travel along your path. Please keep in touch!!
Carrie
I think each person must decide for themselves what quality of life is acceptable. I was diagnosed with a GIST tumor in March of 2011. It was over 10 cm large then and my stomach was bleeding 1/2 pint of blood a day. The doctors recommended an immediate total gastrectomy. I refused saying I would rather die than live without a stomach. At the age of 56 I felt I had led a full and fullfilling life and that to continue living simply to suck in air was senceless. That was my choice. Now nearly a year later I have undergone a partial gastrectomy where only 20% of my stomach was removed. This happy result is due to my refusal to be bullied by doctors into having the surgery too soon and my discovery on the American Cancer Society web page of an alternative treatment to take Gleevec to shrink the tumor.
I am very happy to read all the comments where life after surgery with all its complications can still be rewarding. No one should feel presured to make a choice for their life they can not live with. I am happy with the choice I made for my own life. My gastric diffuculties are compounded by Fibromyalgia. Sometimes I am too fatigued to concentrate on getting proper nutrition so I am very happy that my complications of dumping syndrome, small volume intake, and having to avoid many foods are manageable without robbing me of being able to enjoy the act of eating.
I wish all of you facing the difficult decision of partial gastrectomy the best. Please remember to be firm on what quality of life you will be able to live with following this proceedure. It will make the difference of being able to cope and comming to acceptance of your new life afterwards. Also, please remember not to let doctors bully you into making choices you don’t feel comfortable with. Make sure you are comfortable that you are making the right choice for you.
Thank you for sharing you story, Tesa! I couldn’t agree with you more. We each need to make the decision that is best for our own lives and we each need to do our own homework…not blindly following the advice of a doctor. The doctors don’t necessarily know what is best and they don’t (at least in the U.S.) communicate well with each other if you’re seeing multiple doctors for multiple conditions. Ultimately, it is up to the patient to make informed decisions about her own health, her own body, and the life that she wants to live. Those of us who have made our choices and are willing to share the aftermath of those choices, make it easier for others, in the future, to make informed decisions about their own lives.
I am here to let you know that this surgery can have a positive outcome. I had a large GIST tumor in the upper left part of my stomach and lower esophagus. I had the top third of my stomach removed and a small portion of my esophagus. I spent a week in the hospital post surgery. It has been 18 months since my surgery and I am hear to tell you that for the most part I am doing great. I had to deal with dumping syndrome for a while and there are times when I still get sick. I am now 48 years old and my weight is back to 125 lbs. which is where it was before the surgery. I was lucky, I had an excellent surgeon who knew what he was doing. Of course, things are not 100% normal, but pretty darn close to that. I have a long scar down my abdomen but that is minor compared to knowing that for now I am cancer free. I hope that if there is anyone out there who is reading this and anticipating this surgery, they can know that this surgery does not necessarily mean that things will be horrible afterwards.
To all of you out there..I’m a 61 year woman. My Gastic surgery is only a few week old. As we speak I’m home from my surgey as of April 13, 2012. I was diagnoised as having this tumor one month before my surgery. I was quite surprised, I had never of such tumor. I was in no real pain that caused me to attend the Doctor. My symptoms were…upon retiring for the nite lying on my back I noticed my stomach would feel very empty and hollow inside. I knew that wasn’t a normal feeling. I scheduled an appointment with my primary Doctor; where he referred me a Specialist…at that a Microscop examination was given…at that time the news was given to me. Actually, I didn’t get bent out of shape I took the news very well. At that point…I was excited to have learned about it now than later. I prepeatly began thanking God that this was located now. Currently, I cannot eat too much food at one tme. I just eat throughout the day. Sugar cause me get weak and dizzy. I would like to know have anyone done any reseach on stomach Gastic? What causes it? How to pervent it? My concerns now… will I be okay later in my years. My Doctor is recommending that I take this particular preventive medication for 3years. I will not know what this medication is until my follow-up appointment. I will keep all informed.
Thank you for sharing your story, Ella! What medication will you be taking for the next three years?
It is now 3 1/2 years since my partial gastrectomy and I am still taking acid blocking medication. I originally took Protonix but I now take 40 mg omeprazole twice a day…and have taken this dose for a couple of years. At times, if I’m careful about my diet and keeping my stress level very low, I can reduce the morning dose to 20 mg and use Tums as needed.
The doctors told me that my stomach would eventually expand…perhaps a year post-surgery…but this never really happened. I still have to eat small meals throughout the day (no more than a cup of food). Over filling my stomach or eating sugar or simple carbs just leads to a one – two hour nap. Symptoms of dumping syndrome still persist: tachycardia, nausea, sleepiness, lack of mental clarity. I’ve also developed gluten intolerance since my surgery.
If you have questions, please let me know…or wander through my blog. I’d be happy to share my experience or answer any questions that you have.
Carrie