megosterby@gmail.com

I grew up in South Jersey, went to college in Philadelphia, and grad school at Michigan State.  Taught chemistry at Western Technical College in LaCrosse WI from 2000 to 2017 when I retired. Had a tubal ligation in 1993 due to very heavy menstrual periods.  Fell in 1996 and broke two ribs that the diaphragm is anchored on and then every breath hurt for 18 years.  (Doctors said the muscles had atrophied that should have held them in place, and I underwent dozens of therapies that were supposed to fix it, but nothing worked, and nobody could figure out why.)   Was put on narcotic pain relievers so I could breathe, but couldn't exercise, got depressed, was put on antidepressants, and began gaining a lot of weight.  I fell in 2000 and tore the cartilage in my pubic symphysis (doctor couldn't figure out how it had torn given the way I had fallen) and had three open abdominal surgeries, two to try to fix it, and one to remove the hardware that didn't hold it still to heal and fuse.  Was left in extreme pain, and could not sit for even 5 minutes without excruciating pain, and couldn't stand still.  Could only walk or lie down without extreme pain.

I had gastric bypass in June of 2012, because I was very overweight, had out-of-control high blood pressure, and high cholesterol that wasn't responding to statins and had severe GERD that didn't respond to medication.  Was 235 lbs. day of surgery.  My doctor was Shanu Kothari. I exercised as I lost weight and although I lost over 100 lbs., I never had loose or dangling skin.  It tightened as I lost weight.  (We built a therapy pool room attached to our garage, and got a tax write-off because it was prescribed by three of my doctors.)  Swimming most days was what I attribute the skin tightening up as I lost the weight to.  I was on thyroid hormone at the time of the bypass surgery for benign growths on the thyroid.  Nobody considered lowering the dosage as I lost weight, and I turned out to the unfortunate 1 of 10000 who gets manic with too much thyroid hormone on board.  So I spent almost 6 months manic and lost way too much weight.  I also got a pneumonia, which was really large, in my right lung, and it took four months of antibiotics to clear it up. It turns out that being hyperthyroid from medication causes a choline deficiency, and if not diagnosed and treated can cause permanent nerve damage in the hands and feet and symptoms of peripheral neuropathy.  They did treat mine, and it did get corrected, but they couldn't figure out why the symptoms of neuropathy stayed around when there was no nerve damage.

At around the same time, I was told I needed a repeat colonoscopy because one a few years earlier had had some questionable findings.  It was really bad timing.  After 4 months of antibiotics, I had killed all the friendly bacteria in my gut.  The colonoscopy prep that is standard, to drink a gallon of "GO-Lightly" in an hour is physically impossible for gastric bypass patients.  So they told me to drink two gallons of the stuff since I couldn't drink it fast enough.  That doesn't work.  But they didn't know it at the time.  So, after being up all night drinking the stuff, I wasn't cleaned out, so they couldn't do the test, and they said to try again.  But I talked to the pharmacist, who didn't think it would work the second time either and I purchased, on his recommendation, a bottle of magnesium citrate laxative, and after another night of "GO-Lightly" when I still wasn't cleaned out, drank half of the mag-cit, and it cleaned me out.  But, THEY SHOULD HAVE WAITED UNTIL MY GUT WAS BACK TO NORMAL AFTER GETTING OFF THE ANTIBIOTIC.  Doing it when they did, put my gut into severe diarrhea, with no friendly bacteria at all, and that never got treated or diagnosed.  I lost 35 lbs. in 6 weeks, and was down to 105 lbs, and suffering from severe malnutrition.  I even lost the pad of fat that protects the vagal nerve, requiring SMA surgery to fix the problem.  I had 4 four day hospitalizations that summer to try to get me to stop vomiting.  I couldn't stand up, I could only be bent over at the waist, with my elbows resting on my knees.  It was the only position I had no pain and was not nauseous.  

So, I had an SMA revision 1 year almost to the day from the original bypass surgery.  I was on a feeding tube at the time because had lost way too much weight.  The following Christmas season I had my gallbladder out the day after Christmas.  They'd forgotten or didn't think to put me on the drug to prevent gallstones when I was on the feeding tube as they should have.  So my previously pristine gallbladder now looked like a bag of marbles, and a large stone was slowly moving toward the common bile duct so it had to come out.  Ever since my gut has been in distress.  I get severe pains and frequent bouts of nausea, vomiting, and diarrhea.

In  2016 I was diagnosed with Ehlers Danlos Syndrome, EDS. EDS is a disease caused by your body's protein making mechanisms making errors when it builds connective tissue proteins.  You have 16 kinds of connective tissue proteins, and they're everywhere.  You could have errors in only one or two, or all of them, or any combination of them.  For that reason, the symptoms can vary a lot from person to person with the diseases.  I happen to have a bad case.  It's not a good idea to have gastric bypass, which causes malabsorption (which is why you need to take vitamins for the rest of your life), if you already are a malabsorper due to EDS, as I am. If you have EDS and the symptoms of IBS, you likely are a malabsorber.  In 2019 I had a candy cane revision of the gastric bypass.  So, I'm now up to 8 abdominal surgeries and have pain from adhesions and scar tissue in my abdomen 24/7.

So, it turns out that if you have an SMA issue, and you have EDS, then you get to have the symptoms of that SMA problem forever, even if it has been corrected.  It's called dysautonomia, and it is the reason the symptoms of neuropathy stayed without nerve damage.  It's also the reason that the SMA issue left me with symptoms of postural orthostatic tachycardia syndrome, POTS, (which messes with your fluid retention and electrolyte balance, and makes you nauseous when they get messed up) and the EDS also explains why the pubic symphysis tore, and why the treatments on my ribs never worked. It's why I got the pneumonia, because it makes me immune depressed, and why I've always been the biggest clutz I've ever known, because EDS gives me loose, sloppy joints (They used to think that was true of everyone with EDS but it turns out it's not--only about half of the EDS patients have hypermobile joints). EDS is why I cannot manage to absorb enough vitamins through my gut, and am almost always deficient, and am trying to find a type of vitamin preparation that will be absorbed enough so I can get out of the deficiency status on most of my vitamins.  I used the patches for several years, but the EDS has caused Mast Cell Activation symptoms and now I am getting terrible rashes from the patches, so had to stop using them.  Am currently trying several liquid vitamin and mineral preparations and also a couple as sublingual.  Wish me luck.

Anyhow, I wrote all this to say: IF YOU HAVE EDS AND ARE CONSIDERING A WEIGHT LOSS SURGERY, IT'S NOT A GOOD IDEA.  IT CAN REALLY GO BAD.  EDS HAS SO MANY BAD ISSUES THAT MAKE THE BARIATRIC SURGERY A CRAP SHOOT, THAT IF YOU HAVE ANY OTHER OPTION, IF YOU CAN LOSE EVEN SOME OF YOUR EXCESS WEIGHT BY CONVENTIONAL MEANS AND NOT BY MAKING YOU A MALABSORBER, PLEASE DON'T LET A DOCTOR TELL YOU THIS WILL BE EASY.  IT WON'T.  NOTHING COULD BE FURTHER FROM THE TRUTH.  I WISH EVERY DAY THAT THE EDS HAD BEEN DIAGNOSED BEFORE I DECIDED TO HAVE THE GASTRIC BYPASS SURGERY SO I COULD HAVE REALIZED WHAT A BAD IDEA IT WAS.  MY SURGEON TOLD ME HE WOULD HAVE STILL ADVISED ME TO HAVE IT.  I WAS APPALLED.  HE HAS NO IDEA HOW LITTLE QUALITY OF LIFE I HAVE LEFT.  AND WITH ALL THE REVISIONS I'VE HAD AND HAVING LOST MY GALLBLADDER, THERE IS NOT A WAY TO GO BACK.  I'M STUCK WITH THIS.

At this time, I can eat only 3 or 4 bites of any meal before I get gut cramps and nausea.  About every 2 to 4 days I have one or more bouts of nausea that causes vomiting or dry heaves, sometimes for several hours.  I maintained my weight from 2014 to 2020 at 142 lbs. plus or minus 5 lbs. With few problems.  Now, the EDS symptoms are so severe, and coupled with the gastric bypass, I have lost 10 lbs. without wanting to, and with trying my damnedest to not lose more.  I'm losing this battle.  I can't eat enough food to stay healthy.  I can no longer eat fresh raw fruits or vegetables.  The candy cane revision in March 2019 rebooted the dumping syndrome, so I can't eat more than 5 to 10 grams of sugar at a time, or I'll get sick.  I have not been able to increase that at all, as I was able to after the first surgery.  I also have become intolerant of all artificial sweeteners, including stevia and all sugar alcohols, and I can only tolerate real sugars, such as table sugar, honey, agave, maple syrup, fruit syrups, and the like.  And only in tiny amounts.  So, although I still love the taste of sweets I cannot eat any.  I'm teaching myself to make low sugar desserts and finding things to use, like certain spices, that make foods taste sweeter without adding sugar.

Also, I'm learning to alter recipes so they have less fat since without a gallbladder, I cannot digest a lot of fat at once, so no fried foods, and I've been experimenting with oven "frying" and using an air-fryer.  I'm going to start a food science blog called auntmskitchenscience.com soon.  I've got the domain name and have started putting it together.  There will be info on my surgery and on EDS as well as on the foods I'm experimenting with, and advice on how to alter recipes for other health conditions and diets as well.  The email associated with the blog is also already active, although the blog isn't opened up yet, and it is auntm@auntmskitchenscience.com.  

I'd be interested to hear from anyone else who has EDS and who had bariatric surgery.  Has it been really hard, or was there no effect of the one on the other?  I'd also be interested if anyone has knowledge of liquid or sublingual vitamins with low sugar but no sweeteners, and that are well tolerated.  So many I have tried and spent lots of money on only make me so ill that I have to stop taking them after only a couple of days.  Vitamins and minerals that mean I can eat even less food because they make me sick before I can eat any food are not going to be helpful.  And unfortunately, I've found lots like that.

Some of the symptoms can make me laugh.  The electrolyte imbalances that happen on and off all day can make my touch screens not register my fingers.  So, if my phone won't respond to my touch, it tells me I forgot to take my electrolytes when they were due.  That's funny.