Category: DUMPING SYNDROME

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.

RECOVERY UPDATE

I did begin my exercising this week, but it’s going slow as there are a couple complications not to mention being so weak from the excessive weight loss so fast.

For the first 6 weeks after surgery I only left the house about 3 times, twice to the surgeon for follow ups and once to church for Christmas. Our biggest fear was me catching something because of my compromised immunity, the drastic surgery and the fact that flu season is so horrible this year.  I’ve only been venturing out for the past 2 weeks and have been VERY cautious where I go and being around those that appear sick. BUT, somehow I managed to pick up a new infection 🙁 and are back on high dose antibiotics and have an ultrasound tomorrow for swollen glands in the back of my neck. I’m not normally paranoid, but I am to the point where I’m afraid to leave the house because I really want to get well and move forward.

I WANT MY STRENGTH & ENERGY BACK!!!

The other complication is learning to eat ALL over again – just like a baby. Food has to be reintroduced slowly and in very small quantities to test for tolerances, as well as be nice to all the suturing that took place.   I ate VERY well before this surgery because of other health conditions, but I eat even BETTER now! So when there are complications it just frustrates me beyond belief.

The picture above is a typical example of a stomach bypass.  Below though you’ll see what mine was.  Because of the ischemic portion there was even more suturing for me.  This surgery was more challenging also because I didn’t need to lose weight (well not this much – 30 pounds so far and still averaging about a 1/2 pound loss every day) so it’s been a serious challenge to get enough calories and food. My FitPal account won’t even post my daily results because they think it’s unhealthy.

Dumping syndrome is a condition that can also develop after surgery to remove all or part of your stomach. Dumping syndrome is also known as rapid gastric emptying. Dumping syndrome occurs when food, especially sugar, moves from your stomach into your small bowel too quickly. Early dumping syndrome is likely to resolve on its own within three months and can completely go away, but it can also last for the rest of your life!

Early dumping syndrome usually occurs 10-30 minutes after eating, but symptoms can occur as early as immediately or as late as 3 hours later (late dumping syndrome). Changing your diet can alleviate the chances of developing dumping syndrome, but unfortunately during the first few months you have to experiment with your food intake to see what your personal tolerances are. Plain old sugar is the BIGGEST culprit in causing dumping syndrome.

Dumping syndrome can be severe for some. Early symptoms can include nausea, vomiting, abdominal cramps, diarrhea, flushing, dizziness, lightheadedness and rapid heart rate. Severe cases can require medication. Late dump symptoms can include sweating, hunger. fatigue, dizziness, lightheadedness, weakness and rapid heart rate.

Fortunately, for me I have only had this syndrome a half dozen times as I’m experimenting with new foods and with limited symptoms; nausea, flushing, lightheadedness and a rapid heart rate. Honestly it feels like you’re having a heart attack and are about to pass out so I am VERY careful with what I eat and more importantly WHERE I eat. We went to lunch today at a popular burger place. We will never be going back for other reasons, but evidently they “sugar” their french fries as so many places do these days to make them brown better. This is assumption on my part, but all I ate was a hamburger patty with cheese, 2 tomato slices and 2 french fries and it ruined the remainder of my day when I ended up having the syndrome.

 

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!