Skin Care

When I had my first occurrence of rosacea last September followed by ocular rosacea and a series of chalazion, I threw out all of my skin care and cosmetics and sought the most natural, organic products that I could find.  I love Luminance Skin Care

skincare

I also love the great products at RMS Beauty.  If you’re looking for a more natural approach to beauty and skin care, give these products a try!  They’re long-lasting, quality products!

Liver Cyst and Bowel Obstructions

My posts have become infrequent in recent years but the years have not been uneventful.  After my partial gastrectomy, I gradually learned to adapt to my new anatomy and recognize the signs that my body was losing it’s “balance”.  When needed, doctors would intervene with medication but I have always sought the subtle signs of imbalance and the gentlest, most natural way to realign.  Prescriptions are often more like heavy artillery and come with their own side effects that need further adjustments.  Over the years, I became skilled at using magnesium, DGL licorice, ashwaganda, coconut oil, milk thistle, molybdenum, and variety of herbs and supplements to naturally maintain my “balance” while trying to minimize the use of pharmaceuticals.

When the tumor in my stomach was discovered in October 2007, we also discovered that I had a benign cyst on my liver.  It was not something that needed to be addressed but we kept and eye on it over the years and measured it whenever I had a CT scan.  Over the years it gradually grew and my gastroentrologist instructed me to let him know if I ever felt any discomfort in my right upper quadrant.  In July 2014, I woke from a nap and felt a dull ache and did as I had been told.  An ultrasound revealed that the cyst was now quite large, 11 cm x 10 cm x 9 cm and it need to be “deroofed”.  The top would be taken off and it would be drained.  The surgery would be done laproscopically and I would go home the same day.

I was in the skilled hands of the same surgeon who did my partial gastrectomy and the surgery went well.  I had some mild chest pain in recovery so they kept me over night and sent me home the next day with a Jackson Pratt drain that would remain in place for the next several days.  They removed enough fluid from my cyst during the surgery to fill FOUR Starbucks GRANDE cups…Yikes!….that’s one big cyst!  The convex bulge that had been just below my sternum was now a normal concave shape…and I was on my way to recovery…

…until…three or four days later my body started to completely shut down.  I was weak, in pain, and could barely function.  Family rushed me back to the hospital and after excruciating x-rays of my abdominal cavity it was discovered that I had developed two bowel obstructions post-surgery.  The surgeon had to go back in repair the bowel obstructions and I spent an unexpected week in the hospital and six weeks off work.  It took months to recover my strength and now, more than a year and half later, I am still struggling with trying to find that same “balance” in my gut that I had prior to the liver surgery.  The same “tricks” that I would use prior to the surgery no longer work and for last year and a half I have had a difficult time maintaining a regular bowel pattern.  I’ve had some other health issues as well, which I’ll discuss in other posts, and the financial resources can only stretch so far…so I’ve struggled along trying to find that balance again.  I haven’t been terribly “off”…just not quite where I want to be….

A couple of weeks ago, with other health issues now under control, I decided to try acupuncture to address the imbalance in my digestive system.  I’d had remarkable success with acupuncture for insomnia in the past and I knew that if I went to a “western medicine” doctor, I’d get my 10 minutes to discuss my symptoms and a prescription to alleviate them.  That’s not what I want.  I want a body that is working as optimally as possible so that it can function properly and deal with whatever comes its way.  Allopathic medicine has its place, of course, and has served me well…but, there is also much that can be gained from complementary and alternative medicine (I’ll have more to say about this in future posts).

After just one acupuncture treatment I am pleased to report that while not yet perfectly normal, my bowel function is much improved.  I have three more sessions scheduled in the next three weeks and I am looking forward to further improvement.

Coming soon: Posts about iron deficiency anemia, adrenal fatigue, frozen shoulder, rosacea and chalazion, osteoporosis, and perhaps even a seizure update!  LOL!  The fun never ends…but, for the most part….life is good and all is well!

Two Steps Forward…

…one step back.

It’s been quite a while since I’ve written.  There are several things that I can write about in the coming days…and…it seems that I will soon have a bit more time to write.

I had another partial seizure on Sunday, the second since my last visit with my neurologist six months ago.  I know what triggered the first and I had a good long chat with myself after that…”if there’s another, I must report it to my doctor”.  Since we have a regularly scheduled appointment this Friday, I will let him know then.  The bad news is that it will result in increasing my seizure medication and the loss of my driver’s license for six months.

I had my annual visit with my oncologist yesterday, too, and some of the lab work is back, most of it normal, but I am once again quite anemic, which I had already suspected and was already addressing on my own.  We’ll reassess in three months and if I am not improved I may have another iron infusion like the one that I had three years ago.  Not a big deal…just a bit pricey.  I DID feel much better afterward…

Just as life was returning to normal….

Ah, well.  I’ve been down this road before.  I know the way.

With a smile, and a laugh, on we go…

 

Weaning Off Proton Pump Inhibitors – Part Two

After recently being diagnosed with osteoporosis, I made an appointment with my gastroenterologist to see if there was some other method by which I could manage the stricture at my LES (lower esophageal sphincter).  When I had my partial gastrectomy in 2008, my esophagus was reattached to my stomach, forming a stricture at the LES, and swallowing would become difficult and painful without the use of proton pump inhibitors.  Initially, I used Protonix but in recent years have been able to use 20 mg of omeprazole twice a day to maintain proper function.  The negative impacts of long-term use, however, include bacterial and fungal infection due to low stomach acid and poor calcium and magnesium absorption which can lead to osteoporosis.  I had attempted to wean off of PPI’s once before using ranitidine (75 mg OTC) in the morning and 20 mg omeprazole in the evening but found that after two or three days I was needing to go back to my regular 20 mg, twice daily, omeprazole routine.  The stricture would start to give me problems and I would have the familiar pain and difficulty swallowing.

When I talked to my gastroenterologist recently about this experience, he told me that the ranitidine dose was probably too low.  For the past month I have been taking 20 mg omeprazole in the morning and 150 mg ranitidine at night with the goal to wean off to 150 mg ranitidine mg twice daily soon, when my omeprazole runs out.  This new, higher dose of ranitidine has been more effective.  I have had occasional “complaints” from the stricture but, for the most part, the slow transition has worked.  If you’re dealing with a similar situation, the difficulty in weaning off PPI’s occurs with “rebound hypersecretion”…which I will leave it you to “Google”.  The lower the dose you can manage, the more natural level of stomach acidity you can achieve, obviously, the better….the challenge for some of us, however, lies in keeping multiple conditions in balance.

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.

Niacin Flush

Vitamins

When you’ve had a partial gastrectomy, eating a healthy diet and taking quality supplements is necessary in order to ensure that all of your nutritional needs are met.  It can be difficult to get all that you need from six small meals a day and surgery and medications can affect your body’s ability to absorb nutrients.  If I skip my multi-vitamins just one day, I start to feel fatigued, and skipping other supplements, like calcium and magnesium, have their own familiar side effects.

For several years I’ve been concerned about a reaction that I occasionally experience after taking my supplements.  Approximately 20 minutes after taking my supplements my face, arms, chest, and knees would turn beet red, accompanied by a burning, prickly sensation.  After using an elimination process to determine which of my supplements was causing the reaction, I determined that it was my multi-vitamin, Thorne Basic Nutrients III, the multi-vitamin recommended for me by my naturopath at Bastyr’s teaching clinic shortly after my surgery.  Thorne is a respected brand, producing high-quality supplements….but why am I now having a reaction…occasionally…when I take my vitamins?  Have I developed an allergy to the capsules or is there something in the vitamins that is causing a reaction?  I asked my primary care doctor but she had no advice for me and I continued taking the vitamins…but I continued to wonder.  I tried other brands but did not feel as well as I did when I took Thorne.

Last night the answer occurred to me.  Could my reaction be “Niacin Flush”?  I looked at the back of my vitamin bottle for the Niacin (B3) content:  160 mg/800%.  I take half of the recommended daily dosage on the bottle but, even at that, it is well over the 10 – 15 mg recommended per day.  Niacin is absorbed in the intestines and when taken in excess of 50 mg, it can cause “Niacin Flush”, the same symptoms that I experience….occasionally.  In my case, “occasionally” is a result of dumping too much niacin into the small intestine too quickly when my stomach is empty or when I drink too many fluids with my vitamin.  Losing the vagus nerve during my surgery resulted in gastroparesis and lack of sensation in my stomach.  I never feel hunger and, unless I have overfilled my stomach, I have no idea how much food might be in my stomach.  I had pyloroplasty to aid stomach emptying but it can also allow the stomach to empty too quickly.  So…the solution is to take my multi-vitamin after a meal and to avoid having too much fluid with the meal.

Weaning Off Proton Pump Inhibitors

I’ve been taking proton pump inhibitors since my partial gastrectomy in October 2008.  During the surgery, the surgeon removed my stomach so that the tumor could be completely removed and the stomach reconstructed.  It was then reattached at the lower esophageal sphincter (LES) at the top and the pyloric sphincter at the bottom.  I was prescribed Protonix to protect the LES as it healed and I returned to see my gastroenterologist numerous times for dilation of the stricture that formed at the LES.

Eventually, my insurance company would no longer cover a prescription for proton pump inhibitors and I switched to the generic omeprazole.  I was able to reduce my dose to 20 mg twice a day and have been at that dosage for several years but I have long wanted to get off the drug entirely.  The symptoms that I experience every 12 hours, however…the familiar burn and increasing difficulty in swallowing…have made it impossible to simply abandon the drug.  I’ve discussed long-term use of PPI’s with both my primary care doctor and my gastroenterologist and I was advised to continue taking the lowest dose possible.  That’s it.  End of discussion.  The problem with that answer is that a stomach lacking acid is not a natural or healthy long-term condition.  Stomach acid is necessary for proper absorption of nutrients and to maintain healthy gut flora and my long-term use of PPI’s has resulted in osteopenia and on-going battles with fungal and bacterial overgrowth.

I love my gastroenterologist but I want to take a more holistic approach to managing my condition.  I’ve searched for advice in the past and I don’t know how I didn’t find it before but, a few weeks ago, I read article online that finally made sense to me and I am slowly trying to wean off omeprazole.  The article explains long term use of PPI’s can lead to rebound acid hypersecretion and weaning off requires a slow transition to an H2 blocker and eventually, hopefuly, completely off the medications.  For the last two weeks, I’ve been taking 75 mg ranitidine in the morning and 20 mg omeprazole in the evening.  After the first week I tried taking ranitidine morning and night but it was too soon.  after three days I was experiencing extreme heartburn that prevented me from doing my work and difficulty swallowing as the LES stricture tightened.

Weaning Off Proton Pump Inhibitors – Part Two

Name Change

I just have time for a quick post but felt that an explanation was in order…

I’ve just changed the name of my blog from “Carrie’s NHL Blog”…BORING….to “Half Full”.  It’s not terribly clever but for some time now I’ve been wanting to change the name of my blog to something that reflects where I am now.  Half Full is both a literal reference to life with half a stomach for the last five years and a philosophical reference, reflecting my daily choice to approach the challenges that have resulted from NHL and my surgery in a positive way…my glass is “half full”.  A few more changes coming soon…

Thanks to all who have followed my blog over the years and special thanks to those who have contributed their own experiences.  We all learn from each other.  Thank You!  :)

Gastroparesis

A recent comment on my blog raised the issue of gastroparesis, delayed stomach emptying, a condition that I’m quite familiar with since the vagus nerve ran through the tumor in my stomach and was removed during my surgery.  The following link discusses the condition and I would share that supplementing with magnesium has been beneficial to me in helping to keep things moving.

Gastroparesis

Annual Check-ups

Recent visits with my oncologist and neurologist have gone well.  Labs came back normal following my visit with the oncologist.  I’ve experienced fatigue since the beginning of the year so I requested that a thyroid panel be added to our annual routine and, of course, iron and B12 levels were also checked.  Results all came back normal.  My own thoughts about the fatigue are two-fold:  my regular muti-vitmain, Thorne Basic Nutrients III, had been out of stock so I had used a different brand at the beginning of the year.  When I was able to return to my regular vitamins, my energy level improved.  I also struggle regularly with SIBO and fungal overgrowth in my gut which causes morning headaches and fatigue.  Altering (improving!) my diet to discourage dysbiosis also helps to alleviate the symptoms.

Yesterday I met with my neurologist and the gradual weaning off of the seizure medications continues.  I’m now taking 250 mg Keppra once a day and 25 mg Topamax twice a day with plans to further reduce or completely eliminated the meds later this year.  Now, five years post-surgery, I recognize the signs of hypoglycemia and realize that what I experienced in the year immediately following my partial gastrectomy were not epileptic seizures but blackouts due to extreme swings in blood sugar.