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My new life story and a word of warning

EmergencyIan

Practically Family
Messages
918
Location
New York, NY
So, a few months ago I began having trouble swallowing my food, etc. At first, it was occasional and then progressively got worse. I've had GERD or acid reflux for as long as I can recall...since I was a kid. Well, I ended up at the gastroenterologist and she felt that it was likely a stricture of my esophagus (that's where you esophagus begins to close-up. It's normal diameter is 20mm). A week later she performed an endoscopy where she found my esophagus was constricted to 7mm in diameter. She opened it as much as she safely could on that day and scheduled a repeat endoscopy the following week to dilate the esophagus further. The following week, she dilated it to 15mm and slightly below that she found a small tumor. It was biopsied with a result of extremely high grade dysplasia...it's just a step below cancer with cancer being imminent. As a result, I had a PET scan which is similar to a CAT scan, but it looks at the entire body for areas in your that light up. If any areas do light up, there is a suspicion that it may be cancer. Fortunately, in my case, the only area lit was the tumor area and it only lit up moderately or mid-range. Subsequently, I met with two surgeons and the surgery to remove the tumor was performed a week later. When I awoke, I had an incision in my neck and 5 small incisions in my abdomen along with a feeding tube, a catheter and a huge nasogastric tube hanging out of my nose. That's not to mention the IV's, heart monitors, oxygen, etc. I remained in the hospital for a week. Along with all that, a third of my esophagus and a portion of my stomach was removed in case it is cancer.

I do have a history of a genetic disease called Cystic Fibrosis and needed a double lung transplant when I was 19, in 1993. I'm 43, now and have quite well since my transplant.

Unfortunately, when you have an organ transplant you're immune system needs to be suppressed in order to keep the new organ(s) from rejecting. As you probably know, your immune system also fights cancers from forming.

I probably will live through this situation. I'm two and half weeks post surgery and feeling a bit better each day, but still awaiting the completed biopsy results. I should have the feeding tube removed on the 11th of July and be cleared to resume a regular diet. The gastroenterologists and surgeons are in full agreement that this tumor and stricture formed as a result of GERD/Acid Reflux. I was taking Prilosec, but it just wasn't enough.

What I want to convey is that if you need acid reducing drugs such as Nexium, Prilosec, Prevacid, Zantac or Pepcid, you NEED to take them. I know that some lawsuits have been filed in regard to kidney related issues after taking proton pump inhibitors such as Nexium, Prilosec and Prevacid. All of the doctors who I spoke with at Columbia Presbyterian said that there is no proof that these drugs cause ANY kidney issues or failure. They said that so much of the industrialized world's population takes these drugs that it's not possible to know. What they did say is that the esophagus was not made/created to have acid in it and that acid will eventually damage it, sometimes very seriously. If you need these drugs and are concerned with kidney function, just make sure you stay well hydrated, but protect your esophagus! You don't want to go through what I have.

All of my best,
Ian
 

Paisley

I'll Lock Up
Messages
5,439
Location
Indianapolis
I cured my acid reflux with a low-carb diet. It disappeared within a few days. It reliably re-appears when I eat too much carbohydrate.

Acid reflux medications are associated with mineral absorption problems, bone fractures and pneumonia, and you shouldn't take them long-term. Unfortunately, doctors get much of their information about drugs from industry reps.
 

Michael R.

Call Me a Cab
Messages
2,889
Location
West Tennessee USA
Thanks @EmergencyIan , I just had my endoscopy . I go in a couple of weeks for a follow up . All the best to you , and I hope you have recover fully . I've had cancer twice and a major heart attack , and need another heart cath now . I have Barrett's , and GERD , without Nexium , its a nightmare . Thanks for your story and giving everyone Good Advice . Its Dr month for me again .
 

EmergencyIan

Practically Family
Messages
918
Location
New York, NY
Thanks @EmergencyIan , I just had my endoscopy . I go in a couple of weeks for a follow up . All the best to you , and I hope you have recover fully . I've had cancer twice and a major heart attack , and need another heart cath now . I have Barrett's , and GERD , without Nexium , its a nightmare . Thanks for your story and giving everyone Good Advice . Its Dr month for me again .

Michael, you're welcome. My very best to you, as well. Keep your chin up, then I'm sure you always do.

- Ian
 
Messages
17,219
Location
New York City
Wow, the best part is that it sounds as if you caught it before it became full-on cancer - my fingers are crossed for you for a great results on the biopsy.

I have very mild acid reflux that I address by eating small meals and keeping my fat intake down. I found if I do those two things, I don't experience it. A few times a year (no more), I either eat too much or have too many fats at a meal and the acid returns like clockwork. It's so predictable that I truly only let it happen a few times a year as I know it is not at all good for me.

Best of luck - hopefully, this event is almost all behind you.
 

EmergencyIan

Practically Family
Messages
918
Location
New York, NY
Wow, the best part is that it sounds as if you caught it before it became full-on cancer - my fingers are crossed for you for a great results on the biopsy.

I have very mild acid reflux that I address by eating small meals and keeping my fat intake down. I found if I do those two things, I don't experience it. A few times a year (no more), I either eat too much or have too many fats at a meal and the acid returns like clockwork. It's so predictable that I truly only let it happen a few times a year as I know it is not at all good for me.

Best of luck - hopefully, this event is almost all behind you.

Thanks, Mark. I sure hope so, as well! Yeah, control it however you have to and don't hesitate to seek professional help if you need it.
 

MisterCairo

I'll Lock Up
Messages
7,005
Location
Gads Hill, Ontario
What I want to convey is that if you need acid reducing drugs such as Nexium, Prilosec, Prevacid, Zantac or Pepcid, you NEED to take them. I know that some lawsuits have been filed in regard to kidney related issues after taking proton pump inhibitors such as Nexium, Prilosec and Prevacid. All of the doctors who I spoke with at Columbia Presbyterian said that there is no proof that these drugs cause ANY kidney issues or failure. They said that so much of the industrialized world's population takes these drugs that it's not possible to know. What they did say is that the esophagus was not made/created to have acid in it and that acid will eventually damage it, sometimes very seriously. If you need these drugs and are concerned with kidney function, just make sure you stay well hydrated, but protect your esophagus! You don't want to go through what I have.

I am scoped every two years, have Barrets, and am taking Pantoprazole (aka Pantaloon) daily. Diet changes have no effect on my symptoms (and are certainly no "cure"), but failing to take it for even three days results in agony. My maternal grandfather died of esophageal cancer at age 39. I am taking no chances.
 

EmergencyIan

Practically Family
Messages
918
Location
New York, NY
I am scoped every two years, have Barrets, and am taking Pantoprazole (aka Pantaloon) daily. Diet changes have no effect on my symptoms (and are certainly no "cure"), but failing to take it for even three days results in agony. My maternal grandfather died of esophageal cancer at age 39. I am taking no chances.

Of course, what you're doing is quite prudent. All my best!

- Ian
 
Messages
10,858
Location
vancouver, canada
After many years of ignoring my reflux I went for an endoscopy. The doc said it was the worst non cancerous esophagus he had ever seen. I have been taking nexium for a decade now. I likely just managed to catch it in time
Have tried most everything diet wise
Naturopath wise no effect
Thank goodness for nexium.
 

sheeplady

I'll Lock Up
Bartender
Messages
4,479
Location
Shenandoah Valley, Virginia, USA
I am totally into naturopathic medicine. It successfully ended my IBS, many years ago. But naturopathic medicine (done right) in my opinion, is supplemental to western medicine. And no good naturopathic doctor would say otherwise...

Most of the herbs and vitamins that they use (that have been scientifically proven) are just as dangerous as conventional meds, with various efficacies. (And some of them are the same darned thing... see Willow Bark as my favorite example.)
 
Messages
12,976
Location
Germany
I am totally into naturopathic medicine. It successfully ended my IBS, many years ago. But naturopathic medicine (done right) in my opinion, is supplemental to western medicine. And no good naturopathic doctor would say otherwise...

Most of the herbs and vitamins that they use (that have been scientifically proven) are just as dangerous as conventional meds, with various efficacies. (And some of them are the same darned thing... see Willow Bark as my favorite example.)

And the Kneipp-principles, basically. Before you need medicine. ;)

1. Movement !!!
2. Nutrition !!
3. Hydrotherapy !
4. Curative power of plants
5. Work-Life-balance :D
 
Messages
10,858
Location
vancouver, canada
After many years of ignoring my reflux I went for an endoscopy. The doc said it was the worst non cancerous esophagus he had ever seen. I have been taking nexium for a decade now. I likely just managed to catch it in time
Have tried most everything diet wise
Naturopath wise no effect
Thank goodness for nexium.
After multiple attempts to wean myself from Nexium I have declared a truce and resigned myself. It appears as though Food itself is my trigger and my problem is in the little check valve that is supposed to block the ingress of acid into the esophagus. Surgery has a rather spotty fix rate so drugs it is.

Sent from my SM-G930W8 using Tapatalk
 
Messages
17,219
Location
New York City
Thanks, Mark. I sure hope so, as well! Yeah, control it however you have to and don't hesitate to seek professional help if you need it.

Your story got stuck in my brain. So I made an appointment with a gastroenterologist (which is a big deal for me because my Obamacare insurance only collects premiums, it doesn't pay out any benefits, so I knew this would be a full out-of-pocket expense - which it was).

Based on my thirty year history of mild acid reflux, he recommended an endoscopy procedure. Long story short, I am fine - no pre-cancer, nothing that he saw to worry him at all (he did a biopsy of some samples as they say that is normal and all came back fine).

By the time I was done paying everyone (doctor, blood work, anesthesiologist, this, that and the other thing), it cost me over $2000 which was painful (really, really painful), but worth it for the peace of mind. And for perspective, other than for an annual checkup, I almost never go to the doctor, but somehow your story and my condition combined to push me to go.

So while all is thankfully good, I still want to thank you Ian for your hortatory advice - it was the right thing to do and kind of you to share your experience with us.
 

EmergencyIan

Practically Family
Messages
918
Location
New York, NY
Your story got stuck in my brain. So I made an appointment with a gastroenterologist (which is a big deal for me because my Obamacare insurance only collects premiums, it doesn't pay out any benefits, so I knew this would be a full out-of-pocket expense - which it was).

Based on my thirty year history of mild acid reflux, he recommended an endoscopy procedure. Long story short, I am fine - no pre-cancer, nothing that he saw to worry him at all (he did a biopsy of some samples as they say that is normal and all came back fine).

By the time I was done paying everyone (doctor, blood work, anesthesiologist, this, that and the other thing), it cost me over $2000 which was painful (really, really painful), but worth it for the peace of mind. And for perspective, other than for an annual checkup, I almost never go to the doctor, but somehow your story and my condition combined to push me to go.

So while all is thankfully good, I still want to thank you Ian for your hortatory advice - it was the right thing to do and kind of you to share your experience with us.

You're very welcome, Mark! I'm quite happy to know that all worked out well. I know the pain of medical costs, but I think it was worth it for you.

Additionally, I'm glad that my post/thread helped you or got you moving in the right direction to get a check-up and more. After many of the responses in this thread were "odd," I truly regretted saying anything and felt I shouldn't have bothered. So, it's very fine to know that what I had to say helped at least one person.

I'm waiting to find out how I am. I'll have a follow-up PET scan in late November or late December. I just finished 6 weeks of radiation two weeks ago and 5 weeks of chemo three weeks ago. The margins were clean or clear, but there was cancer in two of the removed lymph nodes. So, they wanted to do this to make sure everything is killed. It felt like the cure would kill me, but I digress. Anyhow, hopefully, I'm passed this, but we'll see.

Again, that's such great news, Mark. I'm glad that what I had to say got you to the doctor and that it gave you piece of mind. I can tell you that it's better to go through the hassle and get checked out. You don't want to go down the road I've been on.

- Ian
 

Peacoat

*
Bartender
Messages
6,464
Location
South of Nashville
Wow, Ian, I just saw this. Hopefully, it was all caught in time. My father had to periodically have his esophagus stretched, and I know that is no fun. Hopefully you won't have to have that done on a regular basis. But I imagine that was small potatoes compared to the other treatments.
 

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