RECOVERY IN PROGRESS UPDATE DAY 180

It’s hard to believe we are at the 6 month mark. Sometimes it feels like it’s been 10 years already. Then when I try to eat something I’m not yet ready for I realize, it’s just been a very short time in the realm of relearning how to eat.

PROGRESS REPORT

So, for some weird AND unknown reason many food smells that were once welcoming AND comforting now turn my stomach. The doctor says this is fairly normal, but CANNOT answer why it is “normal”. Some of the once loved foods that I can no longer stand to be around are:

  • hard boil eggs
  • pancakes
  • cabbage
  • sausage

I also cannot eat much bread, potatoes or rices because they take up too much space in my egg sized portion of stomach with virtually no nutrient value.

‘REGULAR’ WILL BE A LONG TERM AND ONGOING LEARNING CURVE for the REST of my life

I have SLE (Systemic Lupus), Fibromyalgia and recently ended up with a non-weight loss stomach bypass that changed my life beyond belief.  Just 6 months ago you would NOT have been able to convince me to EVER give up ALL sugar – (nothing like waking up from a routine surgery and learning it was anything but routine and you can never again have certain things), but I have to say no sugar is NOT the worst thing ever. I ALSO DO NOT do ANY sugar substitutes or preservatives because of the SLE and Fibro. So, while my diet does become a bit limited, it is possible to cope.  The thing I REALLY miss is coffee, but am making it work with green tea which is ultimately so much more healthy.

I had needed to lose 15 pounds or so as we all do at this stage in life, but now at the 50 pound mark lost, the doctor’s concern is that I lose no more and try to maintain where I am – he actually felt that way at the 25-30 pound mark.  Because there is no “real” stomach or holding vessel for food, the body does not absorb much at all.  For that reason I have certain vitamins and supplements that will be 5 times a day for the rest of my life. I also have to be picky on what I eat as many foods still do not agree with me and I can never eat sugar again.  Anything with high fat is also an issue so it really limits my choices every day. The biggest lifetime issue will be the amount (or lack there of) of food I can eat at any given time.  My stomach is now the size of an egg.  My stomach does not and will not stretch. It also does not absorb much in the way of nutrients.  My stomach will NOT grow or change in any way.  Eating is now and always will be in the future something of a challenge.

One of the biggest shocks was the need for ALL new clothes, I went from a size 8-10 down to a 2 so far. I have had to buy ALL new underwear, bras, pants, dresses and even shoes! Yes, I said shoes. I lost an entire shoe size – I didn’t even know that was possible.  This is just one of the piles of shoes I made when trying to find something to fit on Easter morning.

COMMENCE EXERCISE!

Today is day 60, well it’s actually day 63, but it’s day 60 of being released from the hospital and I can officially begin an exercise routine!  Knowing I would be doing my exercise at home, I researched and ordered a set of training discs a couple weeks ago so I could watch the discs in advance and familiarize myself with the routines and timing. It has been quite a long while since I have done anything this organized, but I know it’s a now or never scenario for me. So far, I’m loving these discs done by a personal trainer as if she’s working personally with you.  It’s a 12 disc set and I’m looking forward to discs 2-12. 😀

Six surgeries plus additional anaesthesias for some of the testings in 7 years have ALL taken a toll on me physically being coupled with having lost so much weight so fast (30 pounds in 60 days so far) with this surgery has left me feeling in serious need of toning my body as well as rebuilding my strength and energy.  My FitPal account won’t even post my weight loss because they say it is happening too fast and is unhealthy – DUH, hence why I’m trying to get more strength.

I ordered Personal Trainer, a 90 day program narrated by (you guessed it) a personal trainer.  I haven’t actually watched ALL 12 discs, but do like the pace and energy so far. I know this program is just what I needed!

I’m hoping that the increase in exercise will speed up digestion and increase hunger so I can actually eat more to keep my FitPal account happier 😀  LOL, the doctor says to eat whatever I want, but with a stomach now the size of an egg and the inability to eat sugar, alcohol or high fat items, what is he thinking??  He did say that eventually I probably CAN eat those things, but I’m here to tell you I have serious doubts and that’s okay too.  I’m adjusting really well (or at least better than I thought I would) to no coffee, sugar or alcohol and eating even better than before which was already REALLY good.

WEEK 4 UPDATE – RECOVERY IN PROGRESS

The bottom line to me is THIS JUST ISN’T FAIR. I didn’t need this surgery for its original intended purpose, I don’t drink or do drugs. I don’t do fast food. I have cooked from scratch (FRESH perimeter shopping, no boxes or cans) for over 30 years since I was first diagnosed with Systemic Lupus and Fibromyalgia. That said, it just proves my point that LIFE isn’t FAIR!

Despite doing everything right most of my life, I’ve ended up with the Systemic Lupus, Fibromyalgia, Ovarian Cancer and have now had an unnecessary gastric bypass because of FAILED MESH to fix a hiatal hernia, not once, but twice before!

So, while, it isn’t fair, it is now reality and I’m learning a new normal. My NEW NORMAL isn’t that much different from my old normal food wise except for amount, frequency and the BIG addition (or subtraction) of ALL sugar, most carbs and fat from my diet. I watched my sugar before, but I did take it in my 1 cup of coffee in the morning and the occasional holiday sweet. I REALLY miss coffee.  Now though there is the possibility of “DUMPING SYNDROME” which frankly scares the hell out of me. As time passes the threat of this will become less and less.  The doctor said he truly believes that by the time I’m “released” in March I will be able to eat and drink WHATEVER I want. Here’s hoping!

I had a really cool doctor doing my Upper GI test today and he showed me everything as he was doing it and where the dye was going.  Good news is there are no  leaks!  The freaky thing was his showing me my “new” stomach and it’s actual size. OMG it’s tiny – like a small hard boiled egg and it does not stretch or give at all.

DUMPING SYNDROME happens because there is no longer a “holding” vessel aka your stomach for food to sit in and gradually pass along to the small intestine. When sugars and starches that you have eaten are dumped into the bowel, they may act like sponges, rapidly absorbing water from the body into the intestine.  This leads to a number of symptoms including diarrhea, low blood sugar and feelings of weakness or dizziness.

ALL Food now passes directly into the small intestine hence why the small amounts, more frequently are more important than ever. From what I’ve read up to 75% of gastric patients may experience DUMPING SYNDROME at some point in their life, but it is most common immediately after surgery and may subside over time. The key is to avoid ALL the triggers.

There are two phases of dumping syndrome; early dumping phase and late dumping phase.

Early Dumping Phase 15-30 minutes after eating
• Caused by rapid entry of food into the small intestine
• Symptoms include nausea, vomiting, cramps, abdominal pain, diarrhea, and feeling full after eating only a small amount of food. Weakness, flushing, dizziness and sweating may also accompany early dumping syndrome.

Late Dumping Phase 90 minutes to 3 hours after eating
• Caused by a rapid rise in blood sugar followed by a rapid decrease in blood sugar
• Symptoms may include sweating, fast heart-rate, weakness, feeling tired, anxiety or mental confusion

General Guidelines to Prevent Dumping Syndrome

  • Eat six to eight small meals daily to avoid eating too much at a time.  You may be able to tolerate larger portions over time, but keep servings small at first.
  • Have a protein food with each meal and snack such as meat, poultry, fish, eggs, milk, cheese, yogurt, nuts, tofu or peanut butter.
  • Do not drink liquids with meals. Drink 30 to 60 minutes before or after meals. Eventually you may tolerate small amounts of liquid with meals.
  • Limit high-sugar foods such as soda, juice, Ensure, Boost, cakes, pies, candy, doughnuts, cookies, fruit cooked or canned with sugar, honey, jams, jellies.
  • Choose high-fiber foods when possible.  These include whole wheat breads and cereals, whole wheat pasta, fresh fruits and vegetables.
  • Choose foods high in soluble fiber.  This includes apples, oats, beets, Brussel sprouts, carrots, spinach and beans.
  • Try adding a serving of fat to meals and snacks such as butter, margarine, gravy, vegetable oils, and salad dressings.  Fats slow stomach emptying and may help prevent dumping syndrome.
  • Some people find that avoiding very hot or very cold foods can be helpful.
  • Chew foods well and eat slowly. Try to relax while eating.
  • Lying down right after eating may lessen symptoms.

YAY!! Today we start the new phase of my diet – trying to add back in fresh fruits and vegetables in VERY small amounts. I have to say that I have missed salads the most! I’m praying I can tolerate that salad!

WEEK 2 RECOVERY UPDATE

I an now entering the “SOFT” diet for at least 2 more weeks and then everything has to be in VERY small portions that are protein packed. SOFT is a relative word in the world of food.  They are really only adding 3-4 things to my diet, so it is still basically bland, unflavorful and plain. This ENTIRE process is about retraining my body and my mind.  Life as I knew it in the food world is over! It really is that plain and simple!

The part about this surgery that sucks is that I am NOT obese and did NOT need a gastric bypass for weight loss, but ended up with one because the doctor could not save the stomach after the BIO mesh side affects from previous procedures. So, life literally got tipped on its end from when I went into surgery and when I woke up – what was scheduled had to be drastically altered mid surgery.

I had wanted to lose a few pounds, which is definitely a done deal now. Now, I just have to make sure to get enough calories to not let it get out of hand!

I have been craving a silly scrambled egg FOREVER it seems! I also get to add a spoonful of peanut butter – YUMMY! And I told hubby not to get too comfortable with his bachelor diet. Starting next month as soon as I can muster enough energy to cook I am going to to take a hand at some Ramen Fusion. 

I’m already looking forward to 2 weeks from now when we enter the Pre-Regular Stage. The real trick will come in March when the lifetime diet takes affect! I am looking forward to the taste of REAL food, but not the digestive process.  Honestly REAL food scares the hell out of me. I’ve always been a type A person who eats too fast and food that too hot.  This is FORCING me SLOW down, chew more and eat less more often.

DAY 7 of a RECOVERY IN PROGRESS

You know the old Yiddish proverb, Man Plans, God Laughs? If not, you should learn it just to keep yourself sane.

So, as many of you know I have been suffering from some health issues the past few years, especially this last year. To give you a quick background when I was 24 I was diagnosed with Systemic Lupus and not doing well. Several months into the disease I went to my rhuematlogist, held out my hand with 32 pills in it and said “I can’t live this way”. She agreed and we moved into treating the disease and it side affects like Fibromyalgia with BETTER diet.  I immediately gave up ALL steroid medications, preservatives, splendas, aspartames, diet food of any kind, non GMO food, canned “food”, boxed “food”, fast food as a whole and started perimeter shopping and scratch cooking with “REAL” foods. My life improved almost immediately.

Fast forward many years to 2011 and my oncologist claiming this change in food prep and eating for all those years saved my life when she was able to lift out a twice torsioned (wrapped around the ovary 2 times) volleyball sized ovarian tumor from my body intact and I have been NED (no evidence of disease) for almost 7 years since.  She decided it was because the cancer had nothing else to feed on in my body except itself. I knew I was extremely blessed when after 6 more months of testing everything and everywhere to make sure it was the only tumor, that they found none. I follow up regularly with blood work and testing.

Fast forward another year and I’m having problems with the hiatal hernia that my cancer doctor found, but left alone. Enter a new gastroenterologist who was able to fix the hiatal hernia and shredded esophogaus with a Nissen Fundoplication (2012). This didn’t alter what I ate except in the beginning 2 months, but did alter how much and how often I ate.  I also gave up 90% of bread – just filled me up too fast.

Fast forward 9 months (2013) and the mesh from the Nissen Fundoplication failed requiring a revision surgery and another period of liquid food adjustment.

Fast forward to 2016 and the E.Coli bacterial infection that landed me in the hospital with a concussion because I lost consciousness and fell after becoming violently ill.  For the next 13 months I was tested by neurology and cardiology for my symptoms before they finally handed me off to gastroenterology which had a HUGE wait time so my wonderful primary doctor got tired of waiting and began doing logical testing on her own. She was the one who founda new hiatal hernia (again) from mesh failure and referred me to the surgeon.  His testing was further delayed another 6 weeks past their normal backlog by Hurricane Harvey.

I love my surgeon and his immediate staff as well as my hospital nurses Ericah and Lexi.  Other than that the hospital will be getting a not so favorable review from me.  The recovery nurse should NEVER have contact with human beings and the respiratory therapist is negligent with he lack of follow through and the nurse’s aides need to be trained in patient care and helping.

We went into last Wednesday believing he was going to be able to fix the fix on the revision surgery.  Unfortunately this is where the Yiddish proverb enters.  I had planned food and EVERYTHING on the fix of the fix, but he was unable to correct the issue and had to make a drastic decision to do a bypass. This is a HUGE DRASTIC LIFE CHANGE for anybody, but for me there is very little information written on it because it isn’t for someone who isn’t doing it for weight loss.  I mean EVERYTHING written about the subject is for people who need to lose significant amounts of weight. The diet is strict because of the bypass in general and I can live with that, but the recovery time has now doubled!

And once recovery time is over the way you eat and how often, etc.. is a lifetime change! I can live with the long term lifetime diet and special vitamins as it is high protein, low fat and REALLY healthy which is right up my alley anyway.

So here we are on day 6 of 90-120 days of nothingness except keeping a food and medicine journal.  I cannot tell you how much ALL of your thoughts and prayers have meant to me and are seeing seen me through this ordeal. There is 1 good thing. I did want to lose about 15 pounds and now that is already a given. 😀

I’m starting to research getting the highest protein, nutrients and minerals into the most flavorful recipes compactly. So I will obviously be revamping some old recipes and looking into some flavor packed Japanese Ramen and/or Thai recipes where I’m making my own noodles with high protein. At the end of the recovery time above an average day for the rest of my life will be small nibbles of small meals that total 4-8 ounces per meal three times a day with 2-2 to 4 ounce high protein snacks, up to 64 ounces of water or tea and 5 mandatory vitamins.

The bottom line is that I need to learn to live with a NEW normal.  You know what they say, LIFE is 10% what happens and 90% how you’ll deal with it. I’m up for the challenge and looking forward to better health.