Partial Gastrectomy – One Year Later

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. ┬áIn 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…..

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50 thoughts on “Partial Gastrectomy – One Year Later

  1. 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

      • Hi Carrie,

        I had 2/3 of my stomach removed due to gastric paresis (flacic stomach that doesnt empty ) 3 months ago. Although eating has become a bit easier I really struggle with nausea when I wake up in the mornings. Do you experience that too and if so do you have any advice?

        Delia
        Southbroom KZN South Africa

      • Hello Delia!

        I don’t experience nausea in the mornings, primarily, I think, because my stomach is empty at that time and that is when I am least likely to feel nausea. I have the most trouble with heavy foods that take longer to digest, like meats, “liquid dairy” such as milk or yogurt, and sugars or too much simple carbohydrates. I feel best when I eat very small amounts of food and vegetables are best. I don’t tolerate spicy foods well anymore and coffee is hard on my stomach so I now drink green tea. It takes time, and you learn to adapt your eating habits and preferences to minimize your symptoms. It’s not easy and I know how eager you must be to learn to cope with your new stomach.

        I had a vagotomy during my surgery since the vagus nerve ran through the tumor in my stomach and it had to be removed. For this, and other reasons, pyloroplasty was also performed to help the contents of my stomach empty. Due to this, I experienced severe dumping syndrome in the early months following my surgery if I didn’t eat appropriately and while the dumping syndrome has subsided significantly, I can still have random episodes. Did you have pyloroplasty as part of your treatment? I’m also curious if you are taking a proton pump inhibitor or other medication for your stomach.

        My advice? I’ve found that ginger is helpful for nausea. I took 500 – 1000 mg of ginger for nausea during chemotherapy and still take it occasionally today. I’ve also had remarkable success with acupuncture and I wonder if that might be helpful to you, too. All of the dietary advice that you read is valid: small meals, avoid certain foods (alcohol, chocolate, sugar, dairy, etc) but, this is quite a lifestyle change to make and, I have found, some of the most difficult challenges can be living with this new stomach in social settings. And, you do want to “live”, too…enjoy some simple pleasure now and then. :) Be sure that you are taking good, quality supplements and getting regular bloodwork to ensure that you are getting proper nutrition. You keep an eye on your B12 levels, in particular, as I’m sure you’re aware. I was glad that I spent some time with a very good naturopath who set me up with a very good vitamin regimen and I’m very good about routine check-ups to monitor my health and nutrition.

        Do you have other questions? Please let me know. I love to hear from others going through similar situations. It’s always interesting and helpful to compare notes!

        Best Wishes! Carrie

  2. 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?

  3. 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!

  4. 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

  5. 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

  6. 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.

  7. 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

  8. 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.

  9. 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

  10. Hi Carrie,

    Thank you for your reply. As far as I know all the surgeon did was remove 2/3 from the bottom of my stomach and reattached the remainder of the stomach to my small intestine.
    I am a type one diabetic so I generally don’t consume sugary foods but I found on the one occasion when I did have something with sugar that it was a very bad idea and now avoid sugar completely. I generally tollerate foods quite well, including dairy. I am ontop of the dumping and manage to keep it at bay. Im really starting to wonder if I am ever going to feel “well” or “healthy” ever again as Im very nauseous from about 3am and often vomit and only feel well enough to get out of bed round noon. I don’t ever feel anywhere well enough to actually get dressed and go out or to work and the thought of spending the rest of my life like this is unbareable. I can manage the dietary issues and manage meals etc. if only I can feel well. My stomach always feels unwell. I take 10mg Motilium 20 minutes before meals to help my digestion along. The reason for my surgery was because of gastroparesis (the digestive system being sluggish and not moving along as it should). In fact the past of my stomach which was removed was sent to the lab for tests and it was completely “dead”. I have contacted a surgeon elsewhere who specialises in the field of gastroparesis and gave him copies of all my scans and tests and he advised that since I have had a partial gastrectomy I would not be able to have a gastric pacemaker fitted and furthermore said that the remainder of my stomach should be removed aswell. I don’t agree as the stomach I have left is healthy tissue. Prior to my surgery I would vomit food up which I consumed hours earlier so it was evident that the stomach was not emptying out into the small intestine. This is no longer the case. Now, when I vomit in the early hours of the morning on an empty stomach, I only vomit bile & saliva so evidently the food I ate the night before has passed through. This brings me to believe that the problem is in the small intestine or even colon. I dont’ pass stools as often as I should either and take movicol to get my stools to happen.
    Suppose Im just looking for a thread of hope that I will eventually feel well enough to get up out of bed in the morning and live my life again like I use to. Get up, see to breakfast for my family, go to work and just live. Prior to my surgery I was hospitalized for severe vomiting in June, gastroparesis was diagnosed in September and surgery was done. I was finally discharged from hospital on 12 October so I was in hospital some four months. I feel like I have lost touch with the world and feel completely dysfunctional.
    Please could you let me have whatever medication information you have as perhaps there is something out there that could make me feel better. After great difficulty to get my hands on Cizapride (Prepulsid) I found it made not difference to my symptoms at all.
    Look forward to your reply and thank you for your blog. I clearly means alot to so many other people out there who have similar problems.

    Regards

    Delia

  11. Cary,

    Thanks for your helpful story. I had a partial gastrectomy 8 months ago and am still suffering. I have bile reflux about 2 nights a week which is really painful in my throat. It takes over an hour to clear and has caused asthma because I cough and the area gets swollen. I have to use an inhaler.

    I also have a lot of diarrhea even though I don’t eat any sugar or sugar alchohols. I tried flat diet pepsi this week and I think that caused it. I made shakes with full fat lactose free milk and equal with either strawberries or vanilla extract and that caused diahrrea.

    I am trying to gain back the 20 pounds I lost and have succeeded almost, but I’m force feeding and find now that I do not enjoy eating at all. I would prefer not to eat, but I’m obsessed with getting the weight back. I eat a lot of cream, cream cheese and butter. I count to 2000 calories. I am inactive as I need to have back surgery which was put on the back burner because of the stomach cancer, early stage 1b.

    So I’m a mess and very unhappy. Do you or any of your readers have any advice for me.

    Thanks for reading this.

    Anne

    • Dear Anne,

      I’m so sorry. I know just how painful those acid reflux episodes are. Experiencing one is enough to make you want to do anything that you can to avoid another one, ever again. Mine have always been at night, after I’ve gone to bed, and I’ve learned to avoid eating before bedtime and avoid those foods that cause acid reflux: chocolate, tomato, citrus, dairy, carbonated beverages, red meat, alcohol….basically all of the things that we really wish that we could enjoy! It’s so important to protect your esophagus and your lower esophogeal sphicter, though, particularly this soon after your surgery. Things will improve, somewhat, in the future, but you need to be careful.

      Diarrhea has been a problem for me, too, and living with my new digestive system has been a learning process. I avoid “liquid dairy” (milk, yogurt, etc) but I can tolerate cheese because the sugars have been broken down in the fermentation process. Great news!…because I LOVE cheese! (the calories help, too!) I also found that I was gluten sensitive after my surgery and while the celiac tests came back negative, I discovered that if I ate a gluten-free diet I was less inclined to problems with diarrhea, constipation and gas. Bad news…since I LOVE bread….BUT, give this a try! Try a gluten-free diet for a few weeks and see if you feel a difference.

      Putting on the weight. Well, I’m still a size 0/1, 113 pound, 50-year-old woman who buys her jeans in the juniors department…four years after my surgery. LOL! :) Although the doctors claimed that it would, my stomach never did “stretch” after my surgery and I continue to eat several small “meals” throughout the day. Eating a healthy diet, having a healthy gut (ie. good bowel movements), and avoiding severe anemia are my priorities. One thing that I nibble on every day (and keep with me for times when I feel my blood sugar may be dropping) is a mixture of nuts, seeds and dried fruit. It’s a nutrient-dense, calorie-dense mixture of peanuts, sunflower seeds, pumpkin seeds, almonds and cranberries (which, of course, can be altered to suit your taste or what’s on sale or in the market). I will also eat a tablespoon of extra-virgin, organic coconut oil from time to time to help keep my gut healthy. I’ve had a problem with fungus overgrowth due to the acid blockers that I’ve had to take and coconut oil has anti-bacterial, anti-fungal properties in addition to being a “healthy fat”…as is olive oil.

      Taking high-quality supplements is very important, too. Shortly after my surgery I saw a naturopath at the Teaching Clinic for Bastyr University here in Seattle. He set me up with a set of supplement to ensure that I was getting all of the nutrition that I needed. Given the limited capacity following surgery and concerns regarding absorption of certain nutrients, it’s important to make sure that you are getting everything that you need.

      I hope that this has helped! Please let me know if you have any other questions or concerns!

      Carrie

      • Carrie,

        Thanks for answering so fast. I’m tired now so I’ll just ask a few things.

        Can you eat chocolate?? You mentioned it in what not to eat close to bedtime. I can’t have any sugar or sugar alcohols. I sleep propped up, but I guess I sometimes slip down. Last night’s episode was 7 hours after I’d eaten. What do you do for the burning pain in your throat?

        As for a balanced diet and supplements, I’ve been so concerned about gaining weight from 95 to my now 113, which is not quite enough, I’ve ignored nurtrition. One thing that I’m concerned about is that before the surgery I had a very very thick head of hair, probably as much as 3-4 people. It is no where as thick now at all. What vitamin would that be?

        My surgeon knows little about nutrition and my general MD told me to take a children’s vitamin. Since it has sugar alcohols to sweeten it, I rarely take it. I had gone back to calcium for a while, but then forgot.

        What do you take on a daily basis?

        Thanks in advance for your help.

        Anne

      • Carrie

        What do you eat that has calories in it? My dense calories come from bread, cream, butter, cream cheese and cheese. I try to have 1700-2000/day. Obviously I’m not absorbing all or I would be fat. I’m inactive because I need serious back surgery. I had it planned just before I discovered I had early stage stomach cancer. I burn very few calories. I hope to have this surgery soon, but my surgeon desided to go on a bunch of conferences since I got to a decent weight and thought I could go through with the back surgery. I’ll have to wait for him because he walks on water for the type of surgery I need.

        According to your blog you’ve maintaned all but 2 pounds from your original writing. I like the idea of snacking on things like nuts and cranberries etc. I’ll try that.

        But please tell me how you keep up your weight without gluten. By the way the only sugar I have is in fresh fruit and not that much of that. I would love to try chocolate, but am fearful. Doesn’t the extra dark have a lot of caffeine which I’ve also had none of.

        Thanks in advance for your response. I don’t know how you have time to write having read about your draconian work schedule.

        Anne

  12. Chocolate is another food that should be avoided if you have acid reflux but I find that I can tolerate it in small amounts on a full stomach. Also, avoid drinking fluids whenever you eat sugar as that just speeds the flow of the sugar from the stomach into the upper intestine, causing problems.

    Are you take an acid blocker such as Protonix or omeprazole? I took 40 mg omeprazole twice a day for the first three years after my surgery and have now weaned myself down to 20 mg twice a day. There are drawbacks to long-term use of acid blockers but there are serious implications to repeated acid relux, too, and, as you know, those incidents are so very painful. I don’t have a remedy for the pain, I’m afraid….aside from time.

    My multi-vitamin is Thorne Basic Nutrients III (I take three capsules/day). I take this with Nordic Naturals Fish Oil as one of my “supplement meals” of the day. I also take “a meal” of 4000 IU Nature’s Life Vitamin D-3 with 500 mg Solaray Calcium Citrate and 200 – 400 mg Solaray Magnesium (magnesium in large doses can cause diarrhea so adjust dosage accordingly. I find mg very helpful in regulating the transit time of food through my gut which is now sluggish following the vagotomy that was part of the partial gastrectomy). I have Thorne Basic B Complex for additional B vitamins when I’m feeling fatigued as well as 27 mg generic Ferrous Gluconate that I take with Vitamin C on an empty stomach (for better absorption) when I am feeling anemic (tired, chills, itchy legs). I also take 500 mg Quercetin and 100 mg CoQ10 with Vitamin E.

    Like you, I got very little nutritional instruction from my surgeon or other specialists. I taught myself….and by the time I went to see nutritionists, I already knew everything that they had to tell me. The naturopath at the naturopathic university was the most helpful, helping me to identify the highest quality supplements and the dosages that would be best for my situation. He spent the most time explaining my needs and how my body now functioned.

    One thing that I didn’t learn until about a year ago is that our body has stores of iron and B12 and that it is around five or six years, post surgery, that many people use up those stores and may require blood transfusion or B12 injections. My iron levels have always been low so this is something that my oncologist monitors every six months….and I am aware of the symptoms and supplement as needed. (Iron supplements cause constipation….so you may need to adjust your diet or other supplements accordingly).

    I’ve always had fairly thick hair but it got quite thin during chemo. It was straight before chemo but grew back a bit wavy and with a bit more grey than I’d like…but I’m glad that it’s back! ;) It’s back to it’s normal thickness but I don’t take a specific supplement for my hair. Perhaps just ensuring that you’re getting good, balanced nutrition will help. :)

    Carrie

  13. Hi Carrie. I had a total gastromectoey on 1/8/13 at Duke/Durham Hospital in NC. I am still struggling greatly and would like to have someone to chat with that has gone through this also. Thanks

    • Hi Michelle!

      Thank you for writing and sharing your experience! I hope that you’ll find some support and answers here. Just three months after your surgery, I know that you are still healing and adjusting to your new body and I hope that you have good doctors who are helping you adapt to your new way of life. As you’re discovering, it’s not easy, and educating yourself about your digestive system and nutrition so that you can recognize symptoms, maximize nutrition, and live the healthiest possible life is so important. Equally important is maintaining a positive attitude…which is sometimes even more difficult. Giving up foods that you love, restricting your meals to multiple “small meals” throughout the day, and dealing with the physical discomforts that must be faced not only affect you physically…but socially and emotionally as well. Friends and family may understand…but when you start going out into the world, with your new digestive system, “the world” doesn’t understand the limitations that you’re dealing with. But…life goes on and the only real choice to make is to live a happy and healthy life….

      With the limitations on food intake, quality supplements are important to insure proper nutrition. I saw a naturopathic professor at a Bastyr University who advised me regarding proper supplementation. Getting enough calories is another concern, of course. I am never far from a mix of nuts, seeds and dried fruits which is high in calories, protein and micronutrients…I snack on it throughout the day or whenever I feel that my blood sugar is getting low. Beans, legumes and vegetables are also an important part of my diet. I don’t tolerate dairy well now…but I can, and do, eat cheese. I’ve also become gluten intolerant and while I don’t adhere to a strictly gluten-free diet, I DO find that I feel MUCH better when I am gluten free.

      As I’m sure that you’re aware, pernicious anemia (B12 deficiency) will be a problem for anyone who has had a total gastrectomy and your doctors will be doing regular blood work to monitor your B12, iron, etc. Those of us who have had a partial gastrectomy can also suffer from pernicious and iron deficiency anemia if our bodies are no longer able to absorb these nutrients…the critical years coming around five years post-surgery when the body’s stores become depleted.

      Are you familiar with Hans Rueffert, Michelle? He is a chef who had a total gastrectomy and you may find information about him online both informative and inspiring: http://www.hanscooks.com/index.htm.

      Please stay in touch and let me know if you have any specific questions. I blog because I found that, while I was going through my cancer, surgery, and recovery, the helpful information that I received came from others that had been through the same thing. Please let me know if there is anything that I can share!

      Carrie

  14. Hi everyone! I have just come across this page while researching copper deficiency post partial gastrectomy. I can offer a long term experience of this procedure as it was 33 years ago I had mine done.

    I had a duodenal ulcer age 12 years, at 17 years I had a vagotomy and pyloroplasty. It was a failure as the surgeon did not do the pyloroplasty correctly resulting in a pyloric stenosis. Six months later I weighed 84lbs (I was 5ft 1″ at that time) I then had a partial gastrectomy and gastrojejuneostomy.

    When the wounds had healed I was discharged, never to be seen again!!!! No dietry advice no suppliments…..nothing. I have been ill ever since and only now 33years later I find out why, through my own research.

    I have seen countless doctors over the years due to sever bone pain, muscle weakness, dumping syndrome, malabsorbtion, anemia, pernisious anemia, fatigue, vomiting, very low blood pressure…..it goes on and on and after 33years I have learned to manage some aspects like dumping and diarrhea..but they still strike without warning on occasion.

    Anyway, 3 years ago the hip/bone pain got very bad, VERY! Deep burning gripping pain inside the bones, I also developed left foot drop. I was wrongly diagnosed with Vasculitis and vascular neuropathy. I have wrongly endured 3 years of chemotherapy (same treatment as for cancer) until I stooped it and said NO MORE!!! I then started to fall and felt my bones were bending and soft. I did my own research after being discharged from hospital yet again with nothing but Morphine and no diagnosis. I then became bed bound.

    I Googled “Hip pain partial gastrectomy” and found “partial gastrectomy syndrome” and BINGO ………OSTEOMALACIA (adult rickets) My GP agreed to do the blood tests…Vitamin D was 14 nmol/L, anyone below 25nmol/L has Osteomalacia. Everything else was low..Calcium, Zinc, Iron, B12, Magnesium…etc. A bone density DEXA scan showed a T score of -1.9 (Osteopenia or very thin bone)

    I have corrected the known deficiencies but am slow to improve, I have not been tested for copper and now find I have the symptoms of copper deficiency (I had wonderd if I had MS as the symptoms are the same) I am seeing my GP tomorrow to ask for the blood test. I already have an appointment at the end of May to see a Neurologist. I also have white hair which I now see is a symptom of copper deficiency.

    I am just about on my feet, but very unsteady. I am 50yrs old and have been unable to work as a nurse since I fell at work last December.

    So you can see vitamin and mineral suppliments are a life long commitment post partial gastrectomy..and i have now given up hope of ever being “normal” again.

    Good luck everyone, and try and stay healthy!
    Take care
    Jenny
    Isle of man
    British Isles

    • Thank you for sharing your experience, Jenny! Like you, I was given very little support after my surgery and had educate myself and find my own answers. As you described, many of the symptoms that we experience can be attributed to a variety of diseases or disorders and it can be difficult to pin down the problem or to simply find our own way to the healthiest, happiest new “normal”. Supplementation, as you said, is “a life long commitment”, as is a life long dedication to living a healthy…and happy…life. :)

      Thank you for taking the time to write! I hope that you’ll share more in the future!

      Carrie

  15. I had a portion of my stomach removed two Weeks ago, i’ve been home a week. The dietician at the hospital gave me no help at all. The first week home, pretty much everything I ate, I’ve found out was not good for me to be eating. I have spent the entire afternoon reading through articles on the internet, and find many of them list foods I was just told to stay away from. Do you have anything you can say about what foods you started with?

    • Hello Nancy!

      I’m sorry to hear that you’ve had to have this surgery and, like many of us, I’m sorry to hear that you were given little guidance before being sent home. The immediate concerns, post-surgery, are learning to live with the limited stomach capacity and learning to recognize the symptoms of, and avoid, dumping syndrome. The doctors assured me that my stomach would stretch and that I would eat normal-size meals again one day. Four years later…this hasn’t happened. I still eat small amounts of food throughout the day to avoid feeling too full and needing to lie down. To avoid dumping syndrome, I avoid sugars, simple carbs, and liquid dairy which can result in symptoms such as nausea, abdominal cramps, diarrhea, feeling of fullness, flushing, dizziness, lightheadedness, rapid heart rate, the need to lie down and rest and, in severe cases, hypoglycemia resulting in confusion and fainting. In my own case, four months post-surgery we believed that I suffered a seizure (I had previously had one grand mal seizure in Las Vegas, two years prior to my cancer diagnosis; three years prior to my surgery) and this was followed by two more “seizure events” over the next year. The “seizures” were never witnessed and a cause was never found…nevertheless, my neurologist diagnosed epilepsy and I spent the next year in a heavily medicated fog. In retrospect, I think that what I was experiencing was severe hypoglycemia which caused me to pass out. I’m now being weaned off of my seizure medication and I recently experience a hypoglycemic event in which I briefly blacked out but didn’t pass out (other symptoms: sweating, rapid heart rate, confusion) and after considering what I had eaten that day, hypoglycemia seemed to be the logical explanation not only for my recent experience but also for what had happened so soon after my surgery. I share this, not to frighten you, but to make you aware of just how aware you will need to be of what you eat and the symptoms you experience.

      Due to the limitations we may experience in absorbing nutrients, I recommend getting good advice about supplementation. I’m fortunate to have a respected Naturopathic university here in Seattle, and I saw a professor there who suggested supplements for me. I take a high quality multi-vitamin (Thorne Basic Nutrients III), Nordic Naturals Fish Oil, Vitamin D, Calcium and Magnesium. I find that taking the vitamin D/Ca/Mg “meal” each day is critical in ensuring that I remain regular (it’s the Mg that’s key here). If you lost your vagus nerve during surgery, you may find that keeping your new digestive system flowing can be a challenge. If so, try 200 – 400 mg magnesium/day.

      You may have been prescribed an acid blocker (omeprazole, lansoprazole, pantoprazole) to protect your stomach and esophagus. Acid blockers reduce your ability to absorb nutrients and contribute to osteoporosis but acid reflux is painful and potentially dangerous so take them if you need them. Four years later, I am still taking 20 mg omeprazole, twice a day. I’m able to use Tums (or the equivalent) instead, at times, but I typically take the medication daily.

      With regard to food, I keep it simple: an egg or two for breakfast, or a few pieces of turkey bacon. A little later, a piece of fruit. Nibble on veggies throughout the day. One thing that I really like is a mix of nuts, seeds, and dried fruit that I have with me at all times. Nuts and seeds are dense in calories, protein and nutrients and if I feel like my blood sugar is getting low, can grab a few bites and feel better. I don’t drink liquids when I eat (it makes you feel full sooner and, if there are sugars or simple carbs in your meal, fluids can speed/increase the affects of dumping syndrome). Protein shakes may seem like a good idea but that is how I discovered what dumping syndrome is all about! I tried one shortly my surgery and 15 minutes later, I was nauseated, sweating, cramping, and running for the bathroom. Yogurt has a similar affect. Cheese is ok, though. Fermentation breaks down the sugars in the milk making it less of a threat to our systems. I used to be a person who liked soups but now, all of that liquid is just too filling. A stew is a better choice. When dining out, I order from the appetizer menu or I get a separate plate and friends and family share their meals with me.

      Be sure to keep up with your annual blood work to watch out for pernicious anemia (B12) or iron deficiency anemia. Last month I had my first iron dextran transfusion after becoming quite anemic and I am feeling much better now.

      I hope that this helps. Let me know if you have any other questions! :)

      Carrie

  16. I just had a total gastrectomy 8 days ago due to gastric cancer, and aside from the obvious adjustments to eating, I have some questions. Did any of you ever have trouble sleeping flat after surgery? I wake up with horrible sharp pains when I inhale or exhale if I sleep flat. I also feel like I walk a little hunched over now because of my incision. Does that go away? It’s killing my lower back, and I’m only 27!

    • Yes…I’m much more comfortable sleeping on my left side, even now, 4 1/2 years after my surgery. I can’t explain the physiological reason for this but, yes…lying flat is difficult and will probably remain so.

  17. I had a total gastrectomy for stomach cancer two years ago and l could only sleep on my back for a long time, now l find l’m not at all comfortable if l sleep on my back. Yes l think the incision does make you walk a bit hunched over , still have trouble with it and and am always having to remember to straighten up two years on.

  18. I had a partial gastrectomy in May 2010 due to blunt force trauma injuries, and I have never been able to eat or drink the same, nor do I ever feel “happy” about food:( ! Before my weight was 118-126 from my teens to the incident, having 2 children in my 20s, and since the surgery I struggle to stay around 105. Now I am pregnant again ( at 40!) and I get dehydrated even quicker than before.
    I never knew about consuming solids and liquids seperately so I am going to give that a try! I also have trouble with motility and vagus nerve damage and I really like chewable papaya enzyme pills, they help a lot. You can get them at most health food or supplement stores. It is supportive to read other people’s experiences with this type of traumatic surgery, it’s certainly nothing friends or family really understand.
    Sometimes when I eat even just a bite or a few sips too many I can feel a bulge in my odendum and I thought it might herniate but luckily not. It’s been over 3 years and psychologically I still have trouble shifting from the mindset “I live to eat” to strict survival mode of “I eat to live”.

    • Thank you for sharing your story, Kaarin. Staying healthy while pregnant must present some real challenges for you. I hope that you and the baby are doing well. Thank you for sharing your experience with papaya enzyme pills, too; I have also used them at times. I also use probiotic pills when my “gut bugs” seem out of balance or when I suspect a candida overload. Since I have difficulty with yogurt, which triggers a dumping response, a probiotic on an empty stomach first thing in the morning is a good solution.

      You also mention some of the psychological affects of a partial gastrectomy. Food is much less a source of pleasure and instead a constant chore. Friends, family, and co-workers don’t understand. We appear fit and healthy to others but we understand that the next bite of food could leave us feeling miserable. It IS good to connect with others who share the same experience and I hope that you’ll write again and share how you are managing your pregnancy!

      Carrie

  19. Hi Carrie
    I’m a male who had a partial gatstrectomy in 1983,aged 21 & I,m still struggling to come to terms with it.Loss of appetite,dumping syndrome are still familiar.I can eat most foods,but obviously not much of it.I hate going out for meals,as I either leave most of the food on the plate, or order Kids meals which some places don’t offer.
    Trying to eat every 2 or 3 hours at work is also difficult,as you mentioned previously.Work colleagues don’t understand.I may appear quite normal to most,but a few bites of food can leave me miserable.Starting relationships is also difficult due to low self esteem.
    I know I’ve had this problem for 30 years,but I’ve only recently come across your site,& I commend you on how you cope with your own problems.
    Any suggestions please to ease my problems?
    Many Thanks.
    Colin
    Berkshire
    England.

    • Hi Colin!

      Thank you for visiting my blog and for sharing your experience…which has been much longer but, it seems, very similar to mine. Next week will be the five year anniversary of my surgery and like you I still struggle with dumping syndrome, lack of appetite, and the social difficulties that come with others not understanding just how challenging our digestive systems can be. Social situations are difficult because we can’t eat or drink like others and we have to be careful to avoid the sudden need to lie down after eating. Like you, I nibble throughout the day and just last night, a co-worker gave me a hard time when she saw me eating at my desk (something that is frowned on in a call center but which my supervisor understands and approves). Co-workers see a 51-year-old woman who weighs 115 pounds and many who don’t know my story look at me with envy, not knowing the reason why I look so “fit” and how hard I work to remain healthy.

      Staying healthy, maintaining a healthy interest in food and eating a balanced diet, getting enough exercise, trying to have a social life…these are all challenges that we face. As the five-year anniversary of my surgery approaches, I’ve been playing with the idea of starting a new blog devoted to living life with a tiny tummy. If you have thoughts, wisdom, suggestions….I’d love to hear them. I’ve heard from many people over the past five years and so many share stories like mine. The surgery is done, the doctors say, “your stomach will stretch and you’ll be normal again” (or something like that), and we’re left to navigate the rest of our lives with an altered digestive system and Google. Life just isn’t “normal” again…and eating, which once could be done without thought or care, for pleasure, is now often a chore that requires careful choices.

      I’m curious, Colin, do you still take acid blockers? I still take 20 mg of omeprazole twice a day and would like to completely wean myself off of the acid blockers but I’m afraid that I would have to be very strict with my diet (no green tea or other irritants) and I’ve already had to give up so much already.

      As for my own advice, I try to remain very positive and avoid stressful situations. I’ll admit that I’ve gotten lazy about my diet which is part of the motivation to start a new blog; to refocus myself on a healthy diet. Prior to, and after my surgery, I spent a good deal of time studying nutrition and worked hard to eat well but other factors in my life have drawn me away from this focus. I need to get back to it. I do take good supplements to ensure that I’m getting the nutrition that I need and the best advice that I got was from a naturopathic doctor who helped me find the supplements that would be best for me.

      Thank you again for writing! I hope that I’ll hear from you again in the future!

      Carrie

      • Hi Carrie, Im told that the part of the stomach which is responsible for the production of acid, is lost/removed when one has a partial gastrectomy. After the surgery the stomach is therefore an alkaline environment. Bile is alkaline and thus the culprit behind the burning and nausea and not acid. Taking ant-acids makes matters worse.

        Ive been on Motillium now 4 times a day, 30 mins before meals and at bedtime. It hasn’t cured my symptoms but at least keeps my digestion going.

        keep up the blog, it’s encouraging to know there are others out there!

        Delia

      • How about taking Carafare which lines the esopagus and sleeping inclined to at least 45 degrees. I still take Prefecid. I’ll ask my surgeon more questions.

        Anne Finn

  20. Here’s my story. I was admitted to the hospital on January 12th, 2014 with internal bleeding. On the 13th a gastroscopy identified a GIST tumour on the stomach wall. CT scan confirmed on the 14th. Was on Pantoprazole IV while in the hospital. That stopped the bleeding so was discharged on the 14th. Taking Pantoprazole orally.

    Surgery was scheduled for the 27th. Biopsy from the surface of the tumour showed it negative for cancer. After surgery the surgeon and pathologist looked at the tumour under microscope and said that it acted like cancer but they said it was not. They took cells from the tumour and observed them in the lab for a week and the final pathologists report came back negative for cancer.

    I had the surgery done laprascopically which meant only four small incisions that healed within a few days. 70% of the stomach was removed in the process but the upper and lower valves were left intact. I was up walking with my IV pole the next day. Discharged from the hospital after 4 nights.

    Surprisingly I needed little pain medication. I had a pain management system hooked up through the IV but after three days they took it off and said if I needed anything they would give me Tylenol orally. I never did take any.

    One tip for those going in for surgery if your health plan covers a semi-private room pay the extra $40 – $50 a night and try to get a private room. Trust me on that.

    Recovery has been pretty quick. I started going to the swimming pool about a week after surgery doing moderate exercise. Been going to the mall for a walk around daily. Im going back to work on February 18th.

    The challenge is the reduced stomach size. Im doing what most of the websites say and that is eating small amounts 6 times a day. On a somewhat liquid diet like Ensure, Carnation Instant Breakfast, yogurt, pudding, lots of pureed soups, fish, scrambled eggs, etc. Drinking Gatorade, fruit smoothies etc.

    I was 205 lbs presurgery. Down to 191 in just under three weeks but it appears to be holding at that level over the past 5 days. So with the weight loss under control the ongoing concern is adequate consumption of all required protein, nutrients and vitamins.

    My next appointment is with the surgeon in May 2014. What I might do is go see my family doctor and have a blood test to see how my bloodwork looks. Any other suggestions would be welcome.

    Male 56 years old.
    Toronto, Ontario, Canada

    • Thank you for sharing your story, Richard! I’m glad that you’re doing well and that your recovery has been quick and relatively easy. The great news is that your LES and Pyloris were left intact. Hopefully that will limit some of your challenges in the future. Small stomach size will probably always be a challenge, though. I lost half of my stomach and five years later I am still uncomfortable if I overfill my stomach. It’s good to hear that you can tolerate Ensure, smoothies and other liquids. Due to surgery to my pyloris, I’ve had to avoid any sugary fluids (or combining sugar/simple carbs with fluids) which are dumped into the small intestine resulting in big swings in my blood sugar levels. As you noted, the ongoing concern, with a small stomach, is ensuring that you get adequate nutrition. I saw a naturopath who helped me develop a program of high quality vitamins and supplements. Its also very important to maintain ultimate gut health in order to maximize absorption of nutrients. A diet of whole foods will help to keep your gut healthy and working at its best. Regular bloodwork is a good idea to make sure that your body is responding well to this change. It’s a new way of life but it sounds like you’re approaching it with a positive attitude! Good for you! :) I hope you’ll stay in touch…I’ll be interested to hear how you’re doing!

      Carrie

      • This is all new to me. The last time I was in the hospital was when I was 7 and had my tonsils out.

        My next appointment is with the surgeon on May 13th. Looks like I’m somewhat on my own in regards to the effects of my diet. The surgeon said I didn’t need to see my family doctor so I suppose any blood work will be done in May. Im making sure I get enough calories, protein, calcium, vitamin c, b12 and iron per recommended daily values but I understand the absorption efficiency may be impaired by the reduced stomach surface area.

        I can allways call the surgeon with questions as he is available by phone.

        Thanks for acknowledging my post and keeping your blog going all these years. Im glad I found it.

      • Yes, it was all very new to me, too. I had lived a very healthy life up until my diagnosis and the stomach surgery has forever changed my approach to food. Like you, I was “on my own” with regard to diet and I sought out the advise of a nutritionist and a naturopath to ensure that I was on the right track. Traditional, western medical training doesn’t include much study in nutrition and while I’ve been lucky to find very good specialists within their fields, my gastroenterologist, oncologist, neurologist, and primary care doctor tend to respond to symptoms with a prescription rather than treating the whole person. Educating myself, knowing my body, and recognizing how my body reacts to various foods and situations has been so important to maintaining optimum health. I’ve done extensive reading and “googling” and I’ve been grateful for the stories shared by others who share this same experience.

        Five years after my surgery, I still take acid blockers daily to protect my LES. I’ve tried multiple times to wean off of them but when I do, I’m prone to difficulty in swallowing and painful acid reflux. Remaining on omeprazole, however, makes me prone to osteoporosis and the decreased stomach pH promotes fungal and bacterial overgrowth. Eating a diet that doesn’t fuel a fungal or bacterial infection is key to minimizing those problems if you want to avoid the symptoms or prescriptions for Fluconazole or antibiotics.

        If, like me, your surgery included vagotomy, you won’t have any sensation of hunger…and you won’t know when you’re too full until it’s too late. You’re stomach will function best and you will optimize the digestion of your food if you eat until you’re 80% full. I now use small appetizer plates and bowls that hold about one cup of food. They help me to remember how much I can eat at any one time. Nuts and seeds are nutrient dense and I usually have a mix of nuts, seeds and dried cranberries with me at all times. You never know when you might be away from home longer than expected and need a little something to eat. Four months after my surgery, I was diagnosed with epilepsy and I had three seizures over the twelve months following my surgery. In retrospect, I now believe that I was suffering from hypoglycemia. I presented this hypothesis to my current neurologist last year and he agreed that it was a reasonable assumption. I’ve been weaning off of seizure medication for the past year and as the dosage decreases, I’ve noticed that I am more prone to the symptoms of hypoglycemia and I’m careful to avoid big swings in my blood sugar.

        I have a dresser drawer that looks like a pharmacy…or a supplement store! :) With limited capacity, it’s difficult to get everything that you need from the food that you eat. If I skip my vitamins for a day or two, my body tells me. In fact, I find that my body responds to so many things so much faster than “a normal human” would react. Stress, sugar, dehydration…my body reacts so much faster now, and more intensely.

        I hope that sharing some of my experience might be helpful to you. Each of our experiences is unique but there are things that we share in common that those with a normal anatomy don’t have to think about. I’m working on a new blog that I hope to launch later this year that will address living with a “tiny tummy”. I’ll post a notice here when it’s live.

        Eat well…and keep in touch! :)

        Carrie

  21. Hi all, I had a partial gastrectomy in oct 2013 for gastroparesis. I have an ulcer now and I’m having trouble with my pylroic muscle. I have trouble eating. I have lost 70 pounds since surgery. My doctor did a scope and did a ballon dilation on my pylroic muscle and now 3 weeks later I’m in pain again. I went to see him today and he said all my pain is from my stomach ulcer which I take 40mg of nexium at night and I smoke. I’m at a loss at what to do. He wants to blame the ulcer but I know it’s my muscle again. He said he wants to do another scope down my throat and then maybe do another partial gastrecomy again to remove the ulcer.. I can’t handle doing it again mentally. I’m totally blank on what to do. I drink fine, but when I eat and swallow I have pain in my stomach. Can someone please help me. Thank you

    • Thank you for sharing your experience, Melissa. When the surgeon removed the tumor from the upper half of my stomach, the surgery included vagotomy and pylorplasty. In my case, the vagotomy meant that I would no longer feel hunger or pain in my stomach. It also caused gastroparesis, which, I’m told, is why the pyloroplasty, surgically opening the pyloric sphincter at the bottom of the stomach, was done. This surgery comes with its own unique set of complications. When I had my partial gastrectomy, my entire stomach was removed, reconstructed, and then reattached to the LES (lower esophageal sphincter) at the top and the pyloric sphincter at the bottom. I have had numerous dilations of the LES and today, more than 5 years post-surgery, I remain on 20 mg omeprazole, twice daily, to protect the LES. If I don’t take acid blockers, the sphincter quickly becomes a problem and I have difficulty swallowing.

      The pyloric sphincter has been a different situation and more difficult to understand since I have no sensation in my stomach. At times, I may have a feeling of fullness and wish that the food would pass through more quickly. At other times, particularly if I eat sugar or simple carbs or high glycemic foods, I experience symptoms of dumping syndrome (flushing, tachycardia, sleepiness). The most dramatic problem has been hypoglycemia; big swings in blood sugar levels that have resulted in passing out and seizures. In the year immediately following my surgery, I had three seizures and I have been on seizure medication ever since. In hindsight, I think that epilepsy was a misdiagnosis by my neurologist at the time but, instead, I believe I was suffering from hypoglycemia caused by my new anatomy. Coincidentally, I will be meeting with my current neurologist today. He agrees with my thoughts about my history, and we have been weaning me off of the seizure medication. Today may be the last day that I take them.

      While my pyloric experience is different from yours, I wanted to share my story in case the possibility of pylorplasty is considered for you. In my case, it was the right thing to do, but understanding how my body was working, post-surgery, was something that came with time. I would also encourage you to seek a second opinion if you and your doctor are not seeing eye-to-eye. Let us know how you are doing and I hope that others who have shared your experience will reply.

      Best Wishes!! Carrie

      • Thank you so much. I hit a road block and don’t know what to that next. It hurts when I eat but not when I drink. I have spasms in my stomach throughout the day.

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