Tuesday, September 6, 2011

I got the "Heebie GP's" - Gastroparesis that is!

So as I have written of late, I have been a tad stressed. I was finally in the groove and finished with many of the  multitude of things that go along with moving (transfer of records, car insurance, school, license, registration, checking, ohhh the list goes on) when an acute and extremely stressful event took place - and that, ladies and gentleman, is all it took. My esophagus and stomach went on strike!!

With Scleroderma - there are GI Issues, of which include esophageal dysmotility and delayed gastric emptying. These are driven from the scar tissue the Big S causes within our organs.When I was first diagnosed I had to do the dreaded motility test at the Mayo Clinic. I can say if I never have to do that again, it will be too soon (yes it was that bad. Totally traumatized! lol) But what the test revealed is the Big S has affected my GI tract. I failed 30% of my swallows and esophageal motility issues were confirmed. Those results and some of my complaints prompted the Nuclear Stomach emptying test, which as suspected, showed some delayed gastric emptying.

What were my complaints? Well I was having some trouble swallowing, although slight. I felt like things would get "stuck" in my throat at times or I would need a lot of water to help "wash things down". I also would have periods when I would feel really full very soon after eating. It would feel almost as if my stomach was pushing up. It was a very uncomfortable feeling. It almost felt as if things had quit moving and were stagnant.

Well, guess what -  that is exactly what was happening. The peristalsis of my esophagus was not as effective at pushing things down my throat and once they got down to my stomach, my stomach was as effective at digesting food and emptying it into my small intestine. This is Classic Scleroderma and no one at the Mayo Clinic was surprised by the results - but I sure was.

When this happened it was uncomfortable, but not that bad - certainly not "Disease Worthy"? But as explained to me, Scleroderma is a chronic progressive disease, and it will progress (aka get worse) over time and well, guess what folks. It has.

My first real bout with what I call TRUE Gastroparesis (which technically IS delayed gastric/stomach emptying) was after my month at the Mayo. I had just been diagnosed, had just lost my job, was adjusting to the emotional and social aspects of the disease and was going through a really rough time which caused A LOT of stress. Well, as you may be aware - stress is not good for anyone, especially those with autoimmune disease. Stress can exacerbate all of the symptoms of autoimmune disease and can (and does) cause a flare up. Stress is also not good for your GI system. I am sure we have all been there, nervous about something and get nauseous or the dreaded diarrhea... right. Been there?

Well combine the affects stress causes the autoimmune disease and top that off with the stress it causes your GI system and you have yourself a Gastric Nightmare called Gastroparesis. The physiologic How and Why stress affects the GI system is really very interesting, but I won't bore you with that - just know there is a physiological response that happens. Stress is not good for you folks!

My first bout of GP, as it is affectionately called, hit me in the face like an iron skillet. It sucked. It was so uncomfortable. I could literally only eat bites at a time and even then it would feel like it was stuck in my throat or just sitting there. My stomach felt like a ball of dough was stuck there, just fermenting. That "stuck food" in my tummy caused extreme nausea that I needed to take Zofran, an anti-emetic, to calm down. And food sitting in your tummy is no good for the lining of your tummy. It can cause erosion - which is why most of us with Scleroderma has Erosive Gastropathy - which basically means areas of erosion on our stomach linings. Well, in order to not get an ulcer and to coat my tummy I would have to take a medication called "Carafate" one half hour before I ate and a half hour after I ate to help coat my stomach and my esophagus. No spontaneous eating for me. And emotionally - that just brings more attention and pomp-n-circumstance to the whole eating ordeal. It was no fun. It was so bad that time, that I could drink water and if I bent over - the water would pour out of my esophagus like a faucet. If I bent over too early after eating, I would regurgitate undigested food. And if I burped - forgetaboutit... it would all come up. Bending over was a no-go with GP.  It was horrible, but eventually with the medication, probiotics and papaya enzymes with every meal, that bout calmed and I was okay. Did stress exacerbate that episode. Absolutely!!

And, as you have probably guessed, it caused this one too. Spending Labor Day weekend with GP was not fun. There were BBQ's to be had and drinks to partake in - which you can't do a whole lot of during a bout of GP. Pretty much I ate ice cream and Fro-yo this weekend. Good thing I LOVE ice cream and fro-yo!

GP also affects your nutrition and absorption. I had some serious vitamin deficiencies. My Vit D level was critically low, and my Calcium and electrolyte levels fluctuate enormously now with this disease, which can be serious. I have periods of malabsorption - which not only affects my vitamins, nutrients and electrolyte balance  - it also affects my medication. If I am not absorbing, digesting or moving food - then my pills are not moving or being absorbed. If my meds are sitting in my tummy and not digesting for a day, not only are they not working but I could double dose on accident if I take my next day pill and the first is still in my stomach. Another issue the GP can cause if a wide variance of your blood sugar. I can feel really shaky and hypoglycemic because all of my food is just sitting in my tummy/esophagus and not being absorbed and then once that large amount of food is finally pushed through it will cause a huge upswing of blood sugar rise and that makes you feel trippy - let me tel you. Like I said - GP is a gastric nightmare!

And one last note - someone wrote me on my Sclerodharma FB page to ask about chest pain. YES! The esophageal issues of The Big S can and does cause chest pain. It is because the food is essentially stuck or slowly moving down the food passage like thick sludge - and that can cause a referred pain to the chest. It can be pretty bad and painful at times. Mine occurs above my left breast right in the middle of my breast and shoulder. It was scary at first before we realized it was part of the GP and esophageal dysmotility. I do not have this, but I am told there can be referred pain to the back, arm and jaw as well. And I am sure, ahem.."gas" is helping cause that pain too. Non-moving fermenting food left in your tummy is a great Gas Factory and you get all the gas and bloating you could ask for during a bout of GP - which in turn causes the nausea. Yep the Big S reeks havoc on the smooth muscle of the GI system and Stress doesn't make it any better.

 Please be kind to yourself. Stress affects you with this disease. It can affect every aspect of this disease. It can cause a flare, a Raynauds attack and a serious bout of GP. Be good to yourself.

Well, I am off to EAT dinner!!  YAHOO!!  And with things looking pretty good, all of it will stay down.
Ohhh the little things in life : - )


  1. I've read every post here since I stumbled across your blog. Thank you so much for recording your journey and sharing the information you've learned. For someone like me, who has lost a year to misdiagnosis and is just navigating all the testing and evaluation, your writings are a priceless resource.

    I hope this comment finds the gastroparesis resolved and that you are having a good day.

  2. Tara - My sweet girl!! Thank you so much for reading and sharing. My heart goes out to you that you are now a member of this club... but please know you are not alone. If you ever need to vent, or talk - I am just and email away. And I don't judge.. promise. I've probably already felt it, thought it, said it, did it or wanted to do it...lol, so please know you care share. I hope this finds you happy and doing well. Take care sweets!! Enjoy your day.