Gastroparesis Awareness Month

Holy self doubt , Batman! I put myself through the ringer trying to write about my health. But August is Gastroparesis Awareness Month and since I was diagnosed with Gastroparesis officially in 2011, I cant let the month go by without at least saying a little piece on it.

That self doubt comes into play when thinking I might have anything of any "value" to say on this topic, because most days I don't feel like ive got a good handle on this condition so how could I help someone else with it or to understand it? I don't know but here goes...

I like to try and keep the tone on this blog as light as I can, but the funniest thing about Gastroparesis is NOTHING... There's just nothing funny about debilitating GI conditions.

So for awareness sake What is Gastroparesis?:
Gastroparesis is a condition that affects the normal movement of the stomach muscles and results in food remaining in the stomach for abnormally long time periods. Stomach muscle Paralysis or Partial Paralysis. Resulting in just scads of symptoms and complications , such as nausea, vomiting, pain, bloating, constipation, weight loss/gain ,malnutrition, starvation and much more.

This condition as in my case often is co-morbid (comes along with) other conditions , I wont bore you with my laundry list of illness's (at least not in this post ). I don't feel like my experience with Gastroparesis is anything special it can be summed up as follows:

Nausea, Nausea, Pain, Er, Hospital, Fluids, Zofran, Nausea, Cant eat, Cant drink , Medication induced migraine, Sleep, Poop, Poop, Poop, Cant Poop, Vomit, Hospital, long Stay, Pain, iv's and testing of all the things and then start all over again.. Its like a never ending stomach flu.

This is a cycle I've been on for roughly 11 years with many meds, hospital visits and nights spent sleeping on the bathroom floor.  One of the most frustrating aspects of Gastroparesis is that there really is no cure and very few effective treatments. The first I tried was called Reglan and while it works well for many people it has a black box warning (for a reason) and while taking it I had a massive reaction in hospital that ended up requiring the crash team. And growing a pituitary tumor. Never again Reglan, Never again...(shakes fist to the medication gods) Since then I still have residual tics and tremors around my mouth when my body is under stress.

Then I found a medication that gives me some relief from the above cycle called Domperidone, unfortunately the FDA has been cracking down on medications that they haven't approved for use in the US so I cant get this med in the US and have to get it from Canada which has been no easy feat, while this drug has been the only one I've had success with for my Gastroparesis the FDA crack down has drs not wanting to prescribe it. So Gastroparesis patients wind up not only facing the illness but a lack of options in care also. At least in my experiences. 

So what do I do? I get my meds from Canada, and adhere to a diet I WOULD NEVER recommend to anyone, that's mostly elemental baby formula with whatever snacks my body will tolerate so I can keep my stomach working best as it can and just deal with the rest each day at a time. 
My drs have recommended a stomach pacemaker for me, and maybe in the future this is something that's possible for me but not now, I've too many other conditions I'm desperately trying to balance to take a risk on a 50/50 improvement chances procedure. Those odds just aren't really worth it at this point in my life but who knows what the future holds. One day at a time

So maybe the self doubt was right and I didn't have anything new to bring to the table, but what I did have was a little piece of me & my story, that always has value in the hearts of those who hear this story and know they aren't alone. And if I'm lucky to those who read this and learn a little more about those that struggle with this invisible illness in their families, social groups and communities. No, I don't have it all figured out and I have no secret cures. I have Gastroparesis and a hope to join my fellow spoonies in spreading awareness .

Thanks for reading, How's your spoons?? 


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