According to the U.S. National Library of Medicine, gastroparesis "also called delayed gastric emptying, is a disorder that slows or stops the movement of food from the stomach to the small intestine. Normally, the muscles of the stomach, which are controlled by the vagus nerve, contract to break up food and move it through the gastrointestinal (GI) tract. Gastroparesis can occur when the vagus nerve is damaged by illness or injury and the stomach muscles stop working normally. Food then moves slowly from the stomach to the small intestine or stops moving altogether. Most people diagnosed with gastroparesis have idiopathic gastroparesis, which means a health care provider cannot identify the cause, even with medical tests." In other words, my stomach is paralyzed and don't know why. Makes me wonder why they make wording so complicated and things so long sometimes.
About four years ago, I had collapsed from the abdominal pain I was having. I was having cramps but I was dealing with the pain as best as I can. I had told my doctors about it. I had upper and lower GI exam (if you know what I mean) done; but nothing was found. I started to drop weight but nothing as bad the last two years. But the cramps got worse and the doctors said nothing was wrong so I figured it had to be all in my head and began to brush it off. I would feel cramps and get an under fever and i'd just ignore it. Something is wrong with the thermometer. Over time it was getting worse when came that night I collapsed.
OMGOODNESS!!!! I HAVE NEVER IN MY LIFE BEEN SO COLD!!! Where is the oven? I wanna get in and roast. BUT at the same time...THE PAIN!!!! If I had a knife, I think I would have at least tried to carved my guts out right there and then between the pain and fainting. I was at the bar my other half Gary worked at during closing (...and NO I don't drink) and am I glad I was there. If I was home, I would have been alone for hours. Matt saw me plastered on the floor and called for help while he was trying to get me up. These guys are awesome. They all took turns keeping an eye on me when i was there. Anyway...Matt and Gary propped the doors open got the car, while the girls held me up in the stool. I kept on fainting. Once Matt and Gary got me in the car, off we went to the ER.
When my temp was taken, it read 91 degrees and I was sweating. They had to retake it a few times because they couldn't believe it. When I went into the back, they wanted to give me morphine for the pain but i refused it. I told them that morphine lowers the body temp as it is and I'm at 91. It's something else or nothing at all. They insisted on the morphine only. I just refused it for my protection. I rather die in pain then have a chemical kill me. End result according to them was it was due to my ovaries. Which to me made no sense when I came in with abdominal pain from going to the bathroom with blood in my poo poo and I was fainting and I had an under fever. My monthly is always normal.
Fast forward to a year ago...still having problems. doctors still saying everything is fine. Then one day my primary is changed to a new one and he sends me to a GI doctor, who then sends me for a sonogram of my stomach and gastric emptying study...you know when you eat the eggs. YUMMY!! ULTRAVIOLET EGGS!! or is it green eggs...where's the bacon?? All I know I spent the day there getting tested and I was sure glad someone was finally listening.
To me it was odd that I was dropping weight the way I. Gary and I ate the same food. I should know. I cooked it. But there were times were I couldn't stand the smell of things because it made me sick to my stomach. There were time I was already in the bathroom puking or worse, I had a bucket in my hand and the bathroom was my true best friend. I proved it a few times by moving my laptop in there a few times. hahahaha THANK GOODNESS FOR WIFI!!! j/k But you get my point.
Once I was finally diagnosed...HALLELUJAH!!! it made sense. vomiting, nausea, dropping weight, belching away (which by the way felt as if i was drinking soda 24/7)...I learned a few tricks with the gross belching. I am now training for opera...constipation or the other way around, the conversations my stomach always seems to try to have with me. I'm still learning the language and I'm still stuck on a few mis-communication barriers there between the stomach and I. Along with these and having all the other symptoms, it was clear I had gastroparesis.
NOW HERE COMES THE BUT...
I am not diabetic, which was odd to me at first, but I do have neurological issues (Chiari Malformation). I will get to that some other time and link the two...
My GI doctor had the information in my file and I reminded him hand full of times I saw him. He prescribed me a couple of medications and told me that I could continue to eat what I wanted but in moderation. I was like ok. cool. The medications included metoclopramide (Reglan) and erythromycin.
Let me get the erythromycin out of the way first since it's easier. I'm allergic to anything that ends with -mycin. Now I have no idea how that happen. Why it started. It just came out of no where. I've always been a chap stick freak and then one day my lips just BLEW UP. I mean Angelina Jolie had nothing on me.
I have picture...
and it got worse when I was prescribed more antibiotics-orally (Z-pack) and cream to put on my lips. hahaha I don't know if that was cruel or funny; but it sure was both at the same time. I still laugh about. The joke that were thrown at me were-well worth having cracked lips just to laugh at. Hey, if I can dish it out, I better be able to take it too. I had it coming. So no antibiotics or creams that end with -mycin for me.
Oh and this is how my lips are normally...
Now for the metoclopramide, which also happens to be the same thing as Reglan, I was more then happy to take. I took it to CVS with the rest of my scripts and dropped it off. When I picked it up, THAT is when my eyes just popped out of my skull.
FDA BLACK BOX WARNING
Self: FDA Black Box Warning? What the heck is FDA Black Box Warning? I've never hear of THAT!!! WT...Hey Gary, Have you ever hear of FDA Black Box Warning? He's saying no too...This is weird. I gotta check what's up with THAT before I take ANYTHING.
I get home...go online...and GOOGLE away FDA Black Box Warning and this is what I found on Wikipedia Now FDA came out with their "watch dog" called Drug Watch which explains all about the labels, warning and our good little friend "FDA black box warning" that go on the pill bottles. Short version: take at your own risk. this pill is one step away from being pulled. your choice to take it...At least that MY version. Their version is "The FDA uses black-box warnings to protect consumers..." Got to love how "they protect" us "consumers" right?
I'll tell ya... It scared me to death. I called my primary, my GI, and my neurologist. Both my primary and neurologist said "absolutely NOT" to take those two medications. When my GI called me back, I flipped out on him asking him what was he thinking knowing that I already had neurological problems and allergies. Wished him a nice life since I already had an appointment set up with my primary to get a dietitian and the neurologist, well I will get to that next time...
Primary set me up with a dietitian and a new GI in Tampa. She already new I didn't want no goof ball or quack of a doctor. No offense to anyone but c'mon now. I do have to laugh. This past year and a half, I really have no idea how I made it. There isn't even a handful of people that know what I was thinking or feeling during this whole time. Most of the time, I just fed them what they wanted to hear. Gary knows.
He even felt the pain I was feeling. He's the only person I can really say I can count on for anything. I lost count on the amount of times where he's scrapped me off the floor. I remember when I couldn't hold it and didn't make it and I just cried and cried from embarrassment in my own home and he just cradled me telling me it was ok. He's in school trying to better himself and shouldn't have to worry about if I'm ok; but he does. He's one in a million and more than infinity. I can go on and on talking about what he does for me. One day I will. Getting back to how I was diagnosed...
While waiting to see the dietitian, I was searching the web to learn as much as I could about Gastroparesis. This is when I discovered Crystal Saltrelli, CHC. I haven't been in any of the classes since I can't afford them but I do have her e-books, get her e-mails, follow her blogs, pins, etc... I had no idea there was a "special" diet involved.
I finally met with the dietitian and she gave me pages of what I could and couldn't have. Low Fat, Low Fiber, High Protein...am I building muscles here??? Now here is the challenge for me and the dietitian comes in. I have to follow THIS DIET?? but this diet consist of no seeds, skin, cow milk because I'm lactose intolerant, no legumes, no green veggies unless they are cooked very well or pureed, no more then 5 oz of chicken or fish a day, no more beef or pork unless it grounds but for now none and the rules ARE just ENDLESS on how I can and can't eat. Just give me jars of baby food and I'll be good to go. EEEEWWW!!!! WAQUETA!!! WAQUETA!!! YAK!!! WHAT WAS I THINKING WHEN I THOUGHT OF THAT!!!! Have you ever eaten jar baby food?? How do those poor babies eat that crap. How do mother's feed them that. hahahahaha Did we eat that crap when we were babies??? hahaha DAMN, We had poor taste back then. hahahaha Thank Goodness for Pinterest because I discovered tons or GPers with recipes and tips and support. I LOVE Heather's pins. She always has some thing fresh and AWESOME ideas to share with other GPers. The we have Mary K who is a chef, so you know you will get good cooking stuff from her. They both suffer from Gastroparesis as well.
I reached out to Heather at one point because of my weight lose. It had gone down to 113. I didn't know what to do. I was at my breaking point. This diet didn't make any sense to me and I didn't know where to start. Nothing I ate was staying down. By the time I met with the new GI, my weight was starting to go down. He basically told me to try to keep my weight up and follow what the dietitian said. It was almost like they were telling me, "Here are your tools, now be a good little girl, and go on and use them." GEEE Thanks. Now how exactly am I suppose to use them if no one has taught me how?
At that time, my weight was still healthy but I had to add protein shakes to maintain it. I had just gotten it up to 125 lbs between seeing my primary and dietitian. That is good for my height; 5 feet 5 inches. If I go higher it would be a little healthier, I think. The lowest I've ever been has been 102. But shhhhhhhh!!! don't tell anyone. I fought hard to get back up. This past week I was so happy I gained a pound. I am now 119 pounds. I have gotten to the point I start celebrating for every accomplishment I reach...gain a pound, I do something nice for myself. Go potty, do something for myself. Didn't puke today or get nausea or whatever it is, I do something for myself that way I can smile. Always be proud.
I wonder how many GPer take Domperidone. Has there ever been a comparison done between Regan and Domperidone? Like here's what the FDA had to say about Regan and Domperidone. How is it that Reglan is still out and Domperidone isn't? Makes no sense to me. I take a few other medications besides Domperidone. One day I will have to post them all.
Now that I am established with the GI, constantly fighting my weight, food issues, bathroom issues, medication issues, money issues and the list goes on. and on...I'm left to wonder how do I win this battle? I left some parts out which I know I will get to them sooner or later or not at all.
One thing is clear, so far I've been winning the battle of stay away from the feeding tube because of my blood work. I have the protein shakes to thank for that. I use Lifetime Life's Basics Plant Protein (vanilla or chocolate is what i like, they have more) and Orgain (any flavor check their web). I take the Orgain when I'm on the go usually. and the Lifetime, I mix it in when I'm making a shake/smoothie. Sometimes I will add it into pudding mix or some kind of bar I am making. I just bought a Manitoba Harvest Hemp Protein powder that I can use so I can bake with and add into hot stuff as well. I haven't tried yet. I'll post what happens when I do. I want to keep it that way. (amazon)
My goal for now is to finish school and maintain my weight and one other thing (next post you will see). I've come to realize in the past year and a half, everything has to be in baby steps. Just like how I eat. Small portions. I will never know what comes next, just like I will never know when I have to go; but always know I always...the porcelain throne. We as GPers want a few things, and one of them is to always want to exit like this...
In the mean time...
I'm no way happy that I have Gastroparesis. It's not fun at all. People who I thought were my friends shut me out because of it and because of my other illnesses. They have their own lives and own problems. I've come to terms with it ALL. I'm in a much happier place and I embrace it. People who haven't been in my life in a while have shown up. Have helped me. Complete strangers from other states who I don't know have have helped me. I embrace that. The little that do have, is worth more than a million and more. My loved ones who are not close by are always near by the support they show and give me. My number one fan, Gary is always by my side no matter what. To me, that's what is important and all that matters. They give me strength. With that strength is where I am taking over.
While some GPs are helping others GPer with the recipes and diets....AND DUUUUUUUUUUUDDDDDDEESSSS, DON'T STOP!!! IT WORKS!!! I give all of you mad props for everything you do. With out you, we would be here. I will not forget the ones who advocate for us GPers. There's a few out there. G-PACT is one of them who out there. They have a Personalized Restaurant Card for when you go to a restaurant, you just show the card so they understand what GP/CIP is and you can order from the children/senior menu. HOW COOL IS THAT!!!! I mean really. Think about it. We only take a few bit sizes of stuff and put it back down. What's the point of paying full price or even going out. Thank you, G-PACT for coming out with such a wonderful idea.
We have those on facebook too...G-PACT, Greens Not Easy, Gastroparesis-The Invisible Pain,
Gastroparesis Awareness NorthWest,and GastroParesisUK just to name a few.
We have a the bloggers who help (some are mentioned above)...Journey with Gastroparesis, Emily's Stomach, Living with GP, and Living with Gastropareis. I'm sure there are more out there.
I may not be feeling good physically, but mentally I am feeling better then before. I am ready to take on the world. Share what I have gone through and what I will go through in detail. I will not hold back. I want to express my thanks to everyone who has been in my life, including those who walked out on me. I am even stronger now then I was before because of them. I realized once again, I can make it and do anything even better than I could before. This all means I am going to get through this with flying colors.
So here's to us GPers. We stands together and and we stand strong.
And look out...I have a BIG MOUTH and I plan to use it.