Surgery Update--Bye, Alfred!

Today, March 31, 2016 I had my gastric neurostimulator removed. I affectionate a named him Alfred after the butler in Batman figuring he would be my right hand man. Instead, Alfred didn't really help me at all. 

Alfred was placed August 2014 in the hopes of blocking the signal of nausea to my brain which, in turn, would cause less vomiting, which in turn would help me eat more. It didn't. I went into surgery weight around 177lbs. By the time I was entering my most recent crisis on March 1, 2016 I had dropped to 165lbs. Today before surgery began to removed Alfred, I had dropped to 155lbs. Clearly my right hand man had fallen asleep on the job. 

It's always a difficult discion to have a device implanted in you--it's a foreign object, hello!--but it's just as difficult to decide to remove it, even when it hasn't helped you in well over a year. The reason for this is that you feel like a failure. 

You've failed Reglan

You've failed Domperidone. 

Linzess isn't exactly working right either. 

And now you've failed the gastric neurostimulator. 

Internally you know you have ZERO control over it, but it's a blow to the ego, the psyche, your morale. You just want your life back, to work, to have a hamburger...but now you just don't know what to do. 

I know that I just need to keep pressing on. Trusting the process and doing my part by consuming what nutrition I can handle at this point to keep my body running. It's not easy...! But I know that's what I have to do. 

Boost is disgusting and the Boost Breezes are SOOO sickeningly sweet they're hard to drink. Ensure Clear are good, so I try and drink those. But Instant Breakfast in the bottle have a higher vitamin and protein count than Boost or Ensure, so I've been drinking that more. I recommend Ensure Clear and Instant Breatast in the bottle, they taste good. 

I hope that NOBODY has to go through this kind of nonsense. It's not easy and it's not fun. But for those that do, I'm here for you and we all have each other. 

The Girl With Gastroparesis and the Emergency Room

Making the decision to go to the ER is a difficult one for someone with a chronic illness. You already know that there's not going to be much that the doctor's can do for you, but, at the same time, you want someone to help you. 

That was the case with me last night. 

But being in as much pain as I was in, I just couldn't bare it any more...so in I went. I had my blankie, my hoodie, everything I needed to be as comfortable as possible in that cold environment. 

When the doctor came in he said he had looked over my chart and said that my last gastric emptying study had been "iffy", whatever that means. Whenever the doctors bring up the study they each say something different. This time it was "iffy". I wish they would come to a consensus about it. The he asked me what was going on and for how long. When I explained I had been in indescribable pain for several days he said "the ER is not for chronic conditions it's for when your stomach is bursting open."

Thanks, Doc. 

He also said "I don't care if you're a cop, a doctor, a priest, or Mother Teresa, do you use marajuana, cocaine, or meth?"...uh, no. I've never been asked that before, so that was an odd and interesting interaction. 

He, like most others--until they meet me--have never heard of the GASTRIC pacemaker, so I schooled him on the Gastric Pacemaker and it's purpose. His ears perked up then and he became fairly interested in what was going on then

He did some tests...blood, an x-ray...gave me some medicine and when it all came back normal--as usual--he sent me on my way home.

Just once I would like for a doctor in the ER or urgent care to act like they give two rips about me even though I'm a chronically ill patient. We see SO many doctors and have SO many tests and SO many procedures, why on EARTH would we want to go to the emergency room unless we have to??! A little dignity and respect would be awesome to experience when going in rather than being lectured. 

The Donut Mistake

Well, I did it, I ate a donut like any normal person would for Teacher's Appreciation Week/Day would...except, I'm not any normal person. I keep forgetting that. You would think that, after having Gastroparesis for five years and having countless tests and procedures, being poked and prodded countless number of times, diagnosed and misdiagnosed and diagnosed again, that I would remember "Hey, eating that chocolatey, doughy round thing is going to send you into a tailspin of despair for X amount of time." 

Nope! I ate that sucker anyway. And I ENJOYED it!

Since eating said donut I have been in a gastroparetic flare for a week. I have had such a difficult time consuming liquids, let alone food. My stomach has been painful to the touch, movement, and just sitting there. I have requested from family and friends alike for an -ectomy of my whole trunk, but they won't oblige--so rude. A pox be upon you donut world, this is your fault!!

...ok, maybe it's more MY fault for giving in to temptation, but I was frustrated that day and chocolatey goodness is my weakness...

Here's the thing with Gastroparesis:: there are varying degrees of it. There are certain things that I can eat that Sally can't. There are certain things that Sally can eat, that I can't. There are certain things that NEITHER of us can/should eat.  Therefore, Sally might be able to handle bread products; whereas (CLEARLY) I cannot. So, if you see me reaching for that chocolate donut again in a moment of weakness, slap me...HARD! 

I attempted onion rings today. That was a big mistake as well. Again, if you see me reaching for those friend rings of yumminess, slap my hand and scream "NO!" It'll only benefit me in the long run. Like the donut, the onion rings are not sitting well and I'm feeling quite sick. Maybe the disease is progressing more? Maybe I'm finding I have more intolerances? Maybe they've always been there and I've just turned a blind eye, who knows. Just remember to tell me "NO, Christine!" when you see me reaching for those kinds of things. 

Triggering foods stink! They make you feel miserable, they make your friends feel miserable for you, they make life in general miserable, so it's best to just avoid them. 

Goodbye, donuts. 

Disneyland and The Girl With Gastroparesis

Every year around early December, myself and some friends go to Disneyland to watch either my mom or my brother (and/or his girlfriend) perform in Disney's Candlelight Procession. The Candlelight Procession is when 800 or so people carol down Main Street, USA and then form a human Christmas tree in front of the train station as a narrator--a famous person--tells the story of Jesus. Naturally, we have a day of fun and frivolity as well. It just does t feel like Christmas if we don't go!

This year I woke up with a sore throat, but I wasn't going to let that stop me from going! We first went to Space Mountain--my most favorite ride!--and I screamed like a little school girl!! Next we went on The Matterhorn and that is probably where I went wrong...I ended up sliding so low in the seat that I was on my lower back by the end. By the time we got to Indiana Jones I almost passed out...twice. I rode the ride, but didn't scream, and tried my best to play it off that I wasn't feeling really sick. I didn't succeed. There were three kids in the group, so while I took a break, someone took them on Tarzan's Treehouse--it was a nice little break. We next hit up Toon Town where the curb and I became best good friends (Forrest Gump referrence). 

We then decided to make our way to get seats to see the performance, only to discover that there weren't any left! We ended up finding a place to sit on a planter behind a tree, but you go to LISTEN not to SEE the Candlelight Procession. Anyhow, we're sitting there chatting away, everyone is eating food we brought--you only eat at Disneyland if you want to sell your first born and your arm--and I turn to my friend and tell her, "I have to throw up!" She gets up and asks a guest control about what they can do to help...there's a trash can over there...we can bring you a bag. I thought for sure they would be a little more accommodating as there was a bathroom about fifty feet to our left...nope! They then suggested I go to the restroom down the street to the right (I totally forgot it was there). My friend and I went there but got turned away because the narrator was about to come out. Ridiculous!!

Needless to say, I missed my brother and his girlfriend performing in the Candlelight Procession and spent some time in the restroom urping up what I didn't eat that day. We met up with the group outside the gates and the kids REALLY wanted to go to California Adventure, so, holding onto my friend's arm, we made our way there. Everyone road the Mater ride and I watched. Then I road Soarin' Over California with them as it's a slow hang glider-style ride. 

Despite feeling like junk the majority of the day, I had a good time. I think I was severely dehydrated and just overdid it. Plus, I think it might have been too much bouncing around after having had Alfred put in. I know it's been almost 4 months, but I think it may have all been a little too much for my body to take. Going to Disneyland to see the Candlelight performance rings in Christmastime for me, so MERRY CHRISTMAS!!

Gastroparesis, Zofran, and Me!

Life with Gastroparesis means a life spent feeling like you've got the stomah flu...or are on a wicked rollercoaster (except it's not that fun)...or have motion sickness...pick your poison. At any rate, you constantly feel like you're going to throw up. Constantly feel nauseous. You try and find ways to curb said feeling in any manner possible, whether it's laying down, sitting up, standing up, passing out, avoiding life, overdoing life, or finding a medicine that will HOPEFULLY help...even a little. 

Enter in Zofran. 

Ondansetron (INN), originally marketed under the brand name Zofran, is a serotonin 5-HT₃ receptor antagonist used to prevent nausea and vomiting caused by cancer chemotherapy, radiation therapy, and surgery. (That's Wikipedia's definition of Zofran). My definition of it is, it sometimes helps me not throw up as much. Pretty simple, right? 

There are times when I only have to take one tablet--sublingually (beneath my tongue)--and I'm fine within a half an hour to an hour. There are other times, however, when Zofran just does not want to work with me or the Gastroparesis flare is so strong and it doesn't work. That is when me and the couch become one. 

Another anti-emetic that works for me is phenergan. The only draw back--for me--is that is makes me WAY sleepy. So I save phenergan for times when I am at home and just cannot take it anymore. It is also in tablet form, small, and easy to swallow. I've found this, personally, to be the stronger of the two (phenergan and Zofran), but because it makes me sleepy--VERY sleepy, I only take it when I'm doing really poorly. 

One nonmedicinal option for nausea is ginger. I've used ginger tea and candied ginger as alternatives to medicine. Over the years--okay, it's only been 5, but sometimes it feels like an eternity--I've pumped A LOT of medicine into my body, so finding an alternative to medication is a good thing. Ginger works fairly well and puts a little pep in your breath!