Partial Gastrectomy – Six Years Later

The most oft-read post on this site is Partial Gastrectomy – One Year Later. When I was preparing for surgery in 2008, and an uncertain future after that surgery, I searched the web for information, both factual and anecdotal, about what would lie ahead.  Experts on medical sites laid out the facts…but it was the personal experience shared by those who lived each day “post-gastrectomy”, that I really valued.  Each of us has a unique experience but there are similarities that only we will share and for that reason, this blog continues….

 

It’s now 2015 and it’s six and a half years since I had my partial gastrectomy with vagotomy and pyloroplasty (for the gory details, please visit the earlier post).  I was re-reading that post earlier today and it was interesting to see how little had changed.  I still weigh 115 pounds and I wear size 0/1 jeans that I have to buy in juniors department.  Now…I’m 52 years old so I don’t want to sound like I’m complaining because I never would have imagined that I would look the way that I do at this age.  I “look” very fit and in many respects, I am well…but I work very hard at it.

 

I still eat several small meals throughout the day, no more than a cup of food at any given time, and liquids and solids are kept separate, for the most part.  To ensure that I get the nutrition that I need I take supplement meals in addition to my regular meals, a high quality multi-vitamin, minerals, antioxidants and other nutrients that I might not be able to eat or absorb in sufficient quantity given the limited capacity of my stomach.

 

Sugar, simple carbs, and high-glycemic foods are “out” since I began having seizures 4 months after my surgery.  The cause of the seizures was not immediately identified but, over the years, I have recognized that the blood sugar swings that result from the pyloroplasty (which results in dumping syndrome) is, for me, a seizure trigger.  Dehydration, lack of sleep, and even the slightest amount of stress can lower the seizure threshold, but the biggest trigger is sugar.  I’ve been on seizure medications since 2009 and when I had been seizure-free for several years in 2012, my neurologist and I began a process to wean me off of the medication.  Originally the seizures had been tonic-clonic, aka Grand Mal, and it took heavy doses of medication to keep them under control.  As I was weaned off the meds and reached a very low dose, the seizures returned, but this time as complex partial seizures.  I would become dizzy, draw inward, and eventually black out for a few seconds but without losing consciousness.  Typically this would occur over the course of 15 or 20 minutes; on one occasion, it took just a few minutes.  Of course, I reported the return of seizures to my neurologist and I am now at a medication level that keeps me stabilized…and I am very careful about my diet.

 

At the upper portion of my stomach, where the esophagus was reattached and a stricture formed…the stricture continues to be an ongoing concern necessitating the daily use of a proton pump inhibitor (omeprazole) to prevent discomfort, GERD, and the inability to swallow.  It’s been several years since I have needed to have the stricture dilated but I take 20 mg omeprazole twice a day to maintain a happy situation there.  I have tried to wean off of PPI’s and use ranitidine (75 mg), a histamine H2 blocker, but after 2 or 3 days of ranitidine in the morning and omeprazole in the evening, the stricture starts to “complain” and I am back to my normal routine.  I’ve discussed this with my gastroenterologist and surgeon and the response from both has been that I may just have to live with the PPI’s.  Hmmm, well, ok….but, this has been a concern because…

 

…I am a 52-year-old woman and I went through an early menopause when I went through chemo.  These are all factors that can contribute to osteoporosis and last week I was diagnosed with osteoporosis following my second DEXA scan.  I’ve scheduled my first annual Reclast IV infusion and I’m going to have another chat with my gastroenterologist to see if there are any new options for managing my stricture.

 

I continue to visit my oncologist annually and my recent visit went well.  My blood work, including B12 levels, all came back normal.  B12 can become a concern five years after the surgery so it was good to know that I’m doing well in that regard.  My ferritin level had dropped but this was likely due to surgeries that I had in September 2014…


…but that is a story that I will save for my next post.

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7 thoughts on “Partial Gastrectomy – Six Years Later

  1. Carrie.
    Carrie. Reading your blog has for me been a great support. Thank you for the sharing and the useful advice and tips.
    A little under a year ago I had a partial gastrectomy for a benign tumour in the lower part of my stomach. I have a very small stomach and its been a challenging journey.
    I had a great medical and surgical team and learnt early on that my own determination would be a big factor in my recovery.
    On the plus size, I look good and love clothes shopping and wearing well fitting and trendy clothes. I exercise on a fairly regular basis and am back at work in a demanding job. I get tired more easily but maybe thats normal at 55!
    The difficult bits are managing the tiredness after a meal or the “dumping”that still persists.
    Like you, I take a good multivitamin and eat very well. My best friend is a nutribullet and almonds!.
    I think having most of ones stomach removed is life changing and that managing the fallout ( literally) requires resilience, humour and sheer determination.
    You have been brave and I hope that your health will improve. Thank you for your blog and take good care. Siobhan.x

    • Thank you for your comments, Sioban…and for sharing your experience! Each of us has a unique experience when we undergo a surgery like this but by sharing our stories we can provide support and find common experience that can make the challenges easier to prepare for and live with. I agree with you that resilience, determination, and I think most importantly, a sense of humor, are the best tools get you through. There is something positive to be found in every person, every experience, every moment of our lives…sometimes we just have to look a little harder to find it. 🙂 It sounds like you are doing well! Good for you!! Thank you for taking the time to write! 🙂

      Carrie

  2. HI Thank you so much for posting, I to had a subtotal 2/3 of my stomach removed due to cancer (carcinoid) in April of 2015. I do get b12 shots and they keep track of my iron but that’s it. I now know I should be taking a multi. and maybe more but how do you know what to take? I don’t feel well most of the time and maybe this is why. What brand of vitamin do you recommend? Any help would be so appreciated.
    God Bless
    Tonya

    • Hi Tonya,

      I’m glad that you’ve found my blog and while the information shared here, by myself and those who share their own experience, is anecdotal, I hope that you’ll find it helpful. We each have unique surgeries and our bodies will respond differently but hopefully you’ll find things here that will help you understand your own situation and live a healthy life in the future. I also hope that you’ll return to share your progress and things that have worked for you.

      The information provided by doctors about life after partial gastrectomy is often minimal…and not always accurate. I was told that my stomach would stretch and I would be able to eat normal meals again someday. For some, that does happen. For me, eight years later, I am still eating very small meals, grazing throughout the day. I also developed epilepsy after my surgery. No one could understand why but over the years, I put the pieces together and realized the pyloroplasty, which needed to be done in order to keep food moving, caused blood sugar swings that triggered seizures as sugars and simple carbs moved too quickly into my small intestine. I’ve had to essentially eliminate sugar and carbs from my diet to help manage my seizures and I know eat an ketogenic diet. My neurologist (I’m on #3), shrugs his shoulders, as if to say “Eh…maybe”, and hands me a prescription for anticonvulsants. I know, however, how certain foods affect me and lower my seizure threshold. I encourage you to pay attention to your own body and learn what works for you.

      I saw a naturopath at Bastyr University when I was diagnosed and he gave me good advice about supplementing my diet. My ability to get everything that I need is inhibited by the small size of my stomach and by the proton pump inhibitor that I have had to take to protect the stricture at my LES, where my esophagus was reattached to my reconstructed stomach. The PPI has other side effects that I work to counteract: propensity toward bacterial and yeast infection, as well as osteoporosis. I have seen three nutritionists over the years and will soon do Spectracell testing to see how well my digestive system is performing. I will also do testing for food sensitivities.

      The multi-vitamin recommended to me by my naturopath was Thorne Basic Nutrients III. I have a number of other things that I take but I think that a good, high-quality multivitamin is important to ensure that you get everything that you need. I can certainly tell when I have missed mine for a few days… I don’t take the six capsules/day that is recommended on the bottle; I take two.

      Like you, my oncologist/hematologist checks my B12 and iron levels annually. So far, my B12 levels have been normal but I have needed two iron infusions in recent years and I have my second Reclast infusion (osteoporosis) scheduled for later this month.

      I hope this helps!

      Blessings!

      Carrie

  3. Thank you for the blog. I am 4 months post partial gastrectomy. I had the upper 2/3 removed due to cancer. I have problems with eating fruit which is strange and also found that food that is creamy makes me sick. I am back at work full time and started going to the gym today. I just wanted to know whether you have any idea on what kind of exercise to avoid? Also, did any of you have problems knowing when you are hungry? I never feel hungry and never know when to go to the loo. Also, low libido? Any advice or sharing will be appreciated.

    Belinda

    • Hi Belinda!

      I’m glad that you found my blog and I hope that you’ll find some information here that will help you adjust to your new life after surgery…and thank you for sharing your experience! Like you, I discovered that there were things that I could no longer eat. Spicy and tart foods irritate the stricture at my LES, where my esophagus was reattached to my remaining stomach. Sugar, carbohydrates, and liquids like smoothies which contain sugars, dump to quickly into my small intestine due to the pyloroplasty was done to aid motility and the blood sugar swings that result when I eat these foods have triggered seizures. I now eat a ketogenic diet – high fat, moderate protein, low carb.

      I’ve done weightlifting, stationary bike, and yoga following my surgery. If you are just 4 months post-surgery, I would advise to take it slow and really listen to your body. Don’t push it while you’re still healing and stay hydrated.

      I have not felt hunger since my surgery more than eight years ago. You learn, with time, how much you can eat at each “meal”. For me, it has often been more challenging to know when to stop because the clues to tell you that you’re full are no longer there. If I overeat, 20 minutes later I’m sleepy and I’ll feel “full” and/or “nauseated”. Food does not move through the digestive tract like it did before and sometimes I’m more full than I thought I was. I graze throughout the day and I never leave home without a snack…some cheese, nuts or seeds…in case I feel that my blood sugar is getting low.

      Libido? What’s that? 😉 I’ve never had a high libido but it is practically non-existent since chemo and surgery. I was 45 when I had chemo which sent me into an early menopause. Intercourse became very painful and as we searched for solutions I tried a vaginal estrogen cream which resulted in a grand mal seizure that same night. I’ve identified fluctuating hormone levels as a contributing factor in lowering my seizure threshold so I have avoided hormonal therapy.

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