I haven't written an update post in FOREVER. I've just had no time. Between school work, studying for Comps and more school work and applying for jobs...yeah. Now that school work is dwindling, my comps are over (and I passed!), I can write this long overdue blog about my GD esophagus.Not NF related, sure, but I am perpetually recovering from stomach cancer surgery, so yeah.
Anyway, I've had problem swallowing since maybe February. Well, ha, I've had problems swallowing since my damn cancer surgery, but it got worse. So did my heartburn. I was worried. So I had an endoscopy in the beginning of March.
This photo below is BASICALLY what I had done in 2009- after part of my stomach/esophagus/GE junction were removed, they fundoplicated it back together:
It's not exactly like this because in this photo, the IN TACT stomach was wrapped against an IN TACT junction/esophagus. They took what was left of my stomach and wrapped it around what was left of my esophagus (it' snot like I have a tiny stomach/esophagus- I don't mean to make it sound that way, but it's significantly less than a full stomach/junction/esophagus!). The fundoplication was so tight in the beginning which is why I couldn't eat and lost 20 pounds
Ha those were the days. Never want to revisit that. This was me 3 months after my surgery.On Thanksgiving. I couldn't even eat. I tried. But my esophagus just would not let me. hence my skeletonlike self.
ANYWAY, so I had my endoscopy in early March. I wasn't on Facebook at the time (yay for my month long ban) so almost nobody knew about this procedure. So imagine the first picture I posted, with the stomach wrapped around the esophagus. Imagine for this to work, they had to match the opening of my stomach with the opening/end of my esophagus.
Well, those 'openings' don't match up anymore. It has slipped. That is why I am having such a hard time swallowing. The food falls on a part of my stomach before the opening, and then it slowly eases its way down INTO the stomach. There's no hole or anything- the food IS going INTO the stomach, but the openings have just pulled away from each other. It really just sucks a lot. It hurts sometimes. So yah it SUCKS. I like that word today. SUCKS. Reminds me of Bill O'Reilly's funny rant "FUCKING THING SUCKS!" because it does.
A LOT.
Nothing they can do- and if it gets worse, they'll have to REFUNDOPLICATE. That means a new surgery. And that means another few months of swallowing complications- and will probably end up like the above picture. My surgeon doesn't want this, so I just have to sort of keep an eye on it.
So for now, I just try my best to chew more and take smaller bites. Smaller than before. Yep. Shit happens, I guess! People have it so much worse, I know I know you don't need to remind me. I'm well aware of that.
In other news, my NF/ilio inguinal pain is still a bitch. Oxycodone makes me itch profusely. Thankfully I only need it for 10-15 days at a time, instead of every single day of my life, but it still sucks. I have to take a sleeping pill if i take oxy before i go to bed because I won't sleep because I'm scratching my arms, legs (especially my legs) and up my nose. My legs are practically destroyed with scratches. Such is life!
Otherwise I'm good.
Anyway, I've had problem swallowing since maybe February. Well, ha, I've had problems swallowing since my damn cancer surgery, but it got worse. So did my heartburn. I was worried. So I had an endoscopy in the beginning of March.
This photo below is BASICALLY what I had done in 2009- after part of my stomach/esophagus/GE junction were removed, they fundoplicated it back together:
It's not exactly like this because in this photo, the IN TACT stomach was wrapped against an IN TACT junction/esophagus. They took what was left of my stomach and wrapped it around what was left of my esophagus (it' snot like I have a tiny stomach/esophagus- I don't mean to make it sound that way, but it's significantly less than a full stomach/junction/esophagus!). The fundoplication was so tight in the beginning which is why I couldn't eat and lost 20 pounds
ANYWAY, so I had my endoscopy in early March. I wasn't on Facebook at the time (yay for my month long ban) so almost nobody knew about this procedure. So imagine the first picture I posted, with the stomach wrapped around the esophagus. Imagine for this to work, they had to match the opening of my stomach with the opening/end of my esophagus.
Well, those 'openings' don't match up anymore. It has slipped. That is why I am having such a hard time swallowing. The food falls on a part of my stomach before the opening, and then it slowly eases its way down INTO the stomach. There's no hole or anything- the food IS going INTO the stomach, but the openings have just pulled away from each other. It really just sucks a lot. It hurts sometimes. So yah it SUCKS. I like that word today. SUCKS. Reminds me of Bill O'Reilly's funny rant "FUCKING THING SUCKS!" because it does.
A LOT.
Nothing they can do- and if it gets worse, they'll have to REFUNDOPLICATE. That means a new surgery. And that means another few months of swallowing complications- and will probably end up like the above picture. My surgeon doesn't want this, so I just have to sort of keep an eye on it.
So for now, I just try my best to chew more and take smaller bites. Smaller than before. Yep. Shit happens, I guess! People have it so much worse, I know I know you don't need to remind me. I'm well aware of that.
In other news, my NF/ilio inguinal pain is still a bitch. Oxycodone makes me itch profusely. Thankfully I only need it for 10-15 days at a time, instead of every single day of my life, but it still sucks. I have to take a sleeping pill if i take oxy before i go to bed because I won't sleep because I'm scratching my arms, legs (especially my legs) and up my nose. My legs are practically destroyed with scratches. Such is life!
Otherwise I'm good.
You really are a strong person, Jen, and if a little ranting helps, rant away. That you can accomplish all of the things that you have and do is a testament to your tenacity. I hope one day that you will be pain free. Hugs and hope.
ReplyDeletePat
I've been worried about you b/c you haven't said anything! Now, I know why. You explain things in such easy terms. U R still such an amazing young lady...you never want to complain, when you have every reason to scream and yell!!! You are forever in my prayers and praying one day soon you will be free of pain and obstacles in your health!!! Love you!!! Carol
ReplyDeleteI am so sorry that this has happened to a Chick-Fil-A girl. And a Shabu girl. And a FrappeSoyLatte girl. And someone who just plain likes FOOD of all sorts. Sucks! Cindy
ReplyDelete