Barrett's Esophagus/surgery

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boop97006
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Date Joined Feb 2007
Total Posts : 14
   Posted 2/19/2007 11:17 AM (GMT -6)   
Hi All;  I'm new to this group, and have been reading your posts with interest.  I've had GERD for over 20 years,  and recently was diagnosed with Barrett's Esophagus.  This is a concern for me since my mother died from Esophageal cancer,  and her brother died from colon cancer. 
SO....we are going down the path to Nissen Fundoplication (sp) surgery.  I had a Bravo test last week,  and a colonoscopy.  New worry- my colon was 'full of'  polyps...I guess that would be another forum...
Right now I'm still feeling the probe from the Bravo, which isn't horrible, but not great.  I take protonix 40 mg 2x a day and 300 mg of Zantac at bedtime.  I burp constantly,  eat what I'm supposed to, and still have a lot of back and neck pain.  Cardiac workup is good.  I'm up for a manometry test next, I guess.  How many of you with Barretts have had or considered surgery?  I am not keen on it- who knows if it will really work?
 I'm not afraid of dying- it's something we all go through,  but I watched my mom die a pretty horrible death,  and I would rather not go out that way.  
Do you ever feel like you are just tired of people messing about with your insides?  Especially since so much of this is a 'lets see if this works' disease.   It's cloudy here in Arizona today,  that must be why I'm gloomy. 
betty
 

sillylilly
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Date Joined Oct 2006
Total Posts : 317
   Posted 2/19/2007 7:17 PM (GMT -6)   
Betty,

The surgery sounds alot better than ending up with cancer. The key to a successful surgery is the experience of the surgeon...make sure he has done alot of them successfully.

I have a friend whose esophagus looked like a dried up snake on the road (her doctors words) and she had a successful surgery going on 5 years now. She says it was well worth the surgery. Her esophagus came back to 90% good again.
Hope you find a good doctor to do it.

Lonibel
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Date Joined Jun 2006
Total Posts : 145
   Posted 2/24/2007 9:29 PM (GMT -6)   
Betty,

How long have you been on the PPI's?

boop97006
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Date Joined Feb 2007
Total Posts : 14
   Posted 2/26/2007 10:10 AM (GMT -6)   

How long have I been on PPI's?  hmm.....

about 20 years...

 

now and then I would stop them,  because...well, I just hate taking pills. 

In the old days it was stuff like Zantac,  then Nexium,  then Prilosec,  oh man...so many different pills! yeah

 

Now it's Protonix and Zantac.


Janiepain
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Date Joined Jan 2007
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   Posted 2/26/2007 8:39 PM (GMT -6)   
I was also diagnosed with Barrett's about 2 years ago.  I have only had reflux about 2 years...and that's when I was diagnosed.  about a year earlier I had chest pains, back pains, and thought it was my heart. I had an endoscopy and it was fine.  A year later, I started having a terrible taste in my mouth, and was very nauseous.  When I had the endoscopy that time, I had Barretts!  I was shocked; had never really had heartburn or GERD.  I have been on numerous ppi's--am now on Protonix and zantac at night.  Different drugs have helped for a limited period of time, but never last long.  I went to Shands at the University of Florida, and the Dr. there didn't recommend surgery...said having endoscopies every 2 years (but I'm having them a little more often) was the best thing to do.  I have a problem with constipation, and they felt that the surgery would make me more uncomfortable.  I worry about cancer, too.  Since I was diagnosed, I have found that several people I work with also have Barretts and just have the endoscopies, but it is very scary.

sillylilly
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Date Joined Oct 2006
Total Posts : 317
   Posted 2/26/2007 10:22 PM (GMT -6)   

Really sorry to hear about your condition.  It's really eye-opening that you could get Barretts in just two years...and to know several other people who work at the same place who have it seems amazing.  I want to have the surgery also, but I have constipation also, so maybe they wouldn't do it. 

Were you on the PPI's for the last two years?  It's scary if these medications aren't really working.  Also, about your constipation...have you tried probiotics, or Activia yogurt, they really seem to help with constipation.  Of course, you probably know about drinking alot of water and eating alot of fruit and veges. 


Janiepain
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Date Joined Jan 2007
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   Posted 2/26/2007 11:35 PM (GMT -6)   

I'm not sure I really did get Barrett's in just two years.  When I asked my Dr. about the first endoscopy not showing anything, he said he could just be that the biopsies were taken in places where the Barrett's wasn't evident.  But you're right...it is scary.  I mentioned to a few people at work about it when I was diagnosed and found 3 others who had it, so I think it is much more common than I thought.  Most people don't have endoscopies regularly, so who knows how many people actually have it?  I haven't tried activa yogurt, but have tried everything else I can think of.  I have colon inertia, diagnosed years ago, and I've had more tests even recently.  The reflux problems are most likely brought on, or at least aggrevated by the constipation.

I've been on aciphex, nexium, previcid and now protonix.  I can't believe they don't work.  My husband suffered for years from GERD and now he takes one nexium a day, and sometimes not every day and he's fine.  I've been taking 2 ppi's a day for 2 years, without much relief at all.  In addition, I just had a bone density test and my bone density is terrible.  My gastro dr. wants me to cut down on the ppi's, as they can lower bone density.  Now I'm on an osteoperosis pill in addition to other meds.  Two years ago I was on absolutely no meds at all, feeling great and no problems.  The last 2 years have been a nightmare.  I just turned 51, and am in good shape physically, very active, but I feel like I'm falling apart.  I blame alot on menopause, because before any hot flashes, the only thing I had to deal with with the constipation, and like I said, that's been a lifelong condition.  I just know this reflux stuff is getting old!!


boop97006
New Member


Date Joined Feb 2007
Total Posts : 14
   Posted 2/27/2007 10:30 AM (GMT -6)   
The trouble with Barrett's is that once those cells start growing in your esophagus,  the normal heartburn pain goes away...that is why so many people are surprised like you were.  The sad thing is that many more people just self medicate for years, and then end up with cancer.  They don't see a doctor until their symptoms are really bad. 
I feel pain in my back, and have for years. I'm on the 'path' to surgery.  I know two people who have had the Nissen procedure, and they are very happy with the results. 
It sounds like you are having so much go on at once, and the bone density is nothing to mess around with either.  I'm lucky to be through menopause, but I remember how miserable that can be.
I don't know how you feel about your GI doc,  but there is never anything wrong with asking for a copy of your records and getting a second opinion,  or third, for that matter.  I've come to believe that we have to take a very active role in this treatment, because at the light end we suffer from the GERD symptoms;  but at the dark end we could die....
and if you don't feel well,  keep seeking the path to get there.
 

sillylilly
Regular Member


Date Joined Oct 2006
Total Posts : 317
   Posted 2/27/2007 10:18 PM (GMT -6)   
Very well said, boop,...you are right on. I was thinking the same thing about the second opinion. My doctor is not keen on me having the surgery so I'm certain that I will seek another opinion because I can't see staying on these meds for 5 years and then having Barretts anyway, plus, osteoporsis along with it.  Janie, I thought a person couldn't take the osteoporsis drugs if they have heartburn.
 I didn't know that about not feeling the pain after a while in your esophagus  but it makes sense. I think it's so amazing that we all seem to have friends or co-workers who have GERD...I also know two people who have had the surgery and are very happy with it...this is epidemic proportions, I think.
I also wonder why these medications don't work like their claim they do...we all seem to have to take extra zantac or something along with the PPI's.  I guess we build up a tolerance..it's maddening.
 
 

Post Edited (sillylilly) : 2/27/2007 8:29:39 PM (GMT-7)


sillylilly
Regular Member


Date Joined Oct 2006
Total Posts : 317
   Posted 2/27/2007 10:30 PM (GMT -6)   
One more thing, Janie, I thought a person couldn't take the osteoporsis drugs if you have heartburn.

Tummytuck
Regular Member


Date Joined Jan 2007
Total Posts : 99
   Posted 2/28/2007 8:39 AM (GMT -6)   
In regards to menopause . . . that is really when I started having all my health problems, B12 deficiencies, carpal tunnel, GERD . . . I can deal with the hot flashes and night sweats and the swiss cheese memory, but it's all these extra ailments that are getting me down. I am going to see a GI next week (finally was referred to one). This doc does the Bard's endocinch. I'm not sure if I'm ready for that, but at least he'll be able to advise me.

Of all the little things I've had go wrong due to hormone deprivation, this is by far the biggest pain in the
a _ _!

Tummytuck

boop97006
New Member


Date Joined Feb 2007
Total Posts : 14
   Posted 2/28/2007 9:59 AM (GMT -6)   

GROWING OLDER ISN'T FOR SISSIES!!!!!!

I'm falling apart in bits and pieces...no matter how much Olay I use!

I see my GI tomorrow to get the latest biopsy results,  and I think we are doing the manometry test then, too...I think she can do it in the office.  I know I'm not asleep for it. 

Frankly,  I don't want to spend the rest of my life having endoscopies 1-2x a year, taking tons of meds that don't make me feel good,  wondering when the Barrett's will change.  I have a heart arrythmia, and have no problem with taking a pill twice a day for the rest of my life, because they WORK...and my heart won't get any worse.  But with my gut- taking tons of expensive pills and dealing with the side effects, and feeling not great all on top of it all is not acceptable to me.  If the surgery MIGHT stop the reflux at best,  or at least lessen it, maybe I can get back on a more normal track...

 

 


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 2/28/2007 7:40 PM (GMT -6)   
Hi everyone.  As far as taking osteoperosis drugs, you're right..Boniva and Fosimax (sp) aren't good if you have any GERD, etc.  I'm on Evista.  The side effects of that are much better....only hot flashes and blood clots mad .  I've only been on it for about  3 weeks, and so far haven't noticed any increase in hot flashes, but at this point, who would notice??
 
I have had a second opinion regarding the GERD and Barretts.  I live in a fairly small town, so I went 3 hours away to Gainesville to Shands Medical Center, which has specialists for everything.  The Dr. there pretty much agreed with my gasterologist at home. I've seen him 3 times so far.  They did a separate endoscopy at Shands, plus the PH test, and the gastric emptying test.  The PH test was normal; which means the meds are working as far as keeping the acid level low, but I still have the reflux part.  I'm not sure if that makes any difference as far as damage to the esophagus, but I can't help but think it's still bad.  I am considering going to Mayo in Jacksonville for yet another opinion.  I'm just tired at this point.  I can't believe how I took for granted being able to eat and not worry about how I'd feel afterwards.
 
For those of you with Barrett's, how often do you have endoscopies?  Both my doctors said they like to do one the first year after diagnosisl and then every two years after that.  Is that what you are doing?  My last one was last May, but I'm not sure I'm going to wait another year.

sillylilly
Regular Member


Date Joined Oct 2006
Total Posts : 317
   Posted 3/1/2007 1:51 AM (GMT -6)   

Janiepain,

Where do you live in Florida?  My husband and I are moving there also in a few months...probably Palm Coast, between Jacksonville and Daytona.  I'm so glad you said there is a Mayo clinic in Jacksonville,  because they have the best doctors.  I'm definitely going to go there. 

What do the docs say about your LES...is it loose and what is colon inertia?  Just keep us informed, because we want to be here for you when you need to vent or share your frustrations...we've all been there...

Boop,

How are your bones after taking PPI's for twenty years?   It was just recently that they announced that the PPI's weaken bone density.  Did you do anything during these years to keep your bones healthy? 

Sillylilly


Tummytuck
Regular Member


Date Joined Jan 2007
Total Posts : 99
   Posted 3/1/2007 8:40 AM (GMT -6)   

I'm with you, boop.  I don't lament the loss of my youth; I've had my turn.  But all of these bonus ailments are for the birds. eyes

 

Tummytuck


sillylilly
Regular Member


Date Joined Oct 2006
Total Posts : 317
   Posted 3/1/2007 12:15 PM (GMT -6)   

Tummy,

I know what you mean...I thought these were suppose to be the best years of our lives according to AARP...I know the old saying that if life throws you lemons, we're suppose to make lemonade...but us GERDies know that lemonade "ain't" good for our esophagus...I sure hate to see so many young people getting this disease in their 20's and have a lifetime of lemons.  Hang in there....sillylilly


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 3/1/2007 5:33 PM (GMT -6)   
Hi Sillylilly,

Love your name! Anyway, I live about 60 miles south of Daytona in Merritt Island...right by Kennedy Space Center, Port Canaveral and Cocoa Beach. When we moved to Florida in 1991 from the DC area, we looked at Palm Coast, but at that time it was just a little too small for us. It's a beautiful area though, and you'll be so close to St. Augustine, which is one of my favorite places.

I honestly think my reflux is from constipation....colon inertia basically means your colon doesn't work, and I never had the urge to evacuate. I rely on Senokot every 4 days or so, and it's been a way of life my entire life. My option is removal of the colon which freaked me out when it was suggested, but honestly if I knew it would stop the reflux problems, I'd seriously consider doing it. I think I will go to Mayo to see what they recommend.

I'm not sure who suggested the Golden Years were great, but I think I passed them in my 40's! When I hit 50 last year. I started falling apart...actually it was around 49. Until then, I felt great, never took any medicine and didn't realize how lucky I was!!!

Thanks for the encouragement...I will keep you posted!

sillylilly
Regular Member


Date Joined Oct 2006
Total Posts : 317
   Posted 3/1/2007 10:42 PM (GMT -6)   
It's nice to know that Palm Coast is a nice area...it's about 60,000 people now. We've only seen it on the internet so we are glad to hear it's a nice place. WE're flying back in April to check it out.

I hope you consider carefully about removing your colon. I don't know whats worse, GERD or an ostomy bag...maybe GERD is now that I think of it. I hope it all works out for you successfully.

Sillylilly

Janiepain
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Date Joined Jan 2007
Total Posts : 662
   Posted 3/1/2007 11:01 PM (GMT -6)   
Hopefully there wouldn't be an ostomy bag--if the surgery goes as planned, there doesn't have to be one!
 
I'm not close to doing that yet, but I was told my a surgeon at the colon and rectal center in Orlando that it was probably in my future.  I left his office in tears, and then did some further research.  It seems like since I've had to take so many different meds the senna I've always taken doesn't work like it used to.  I'm just very tired of this.
 
Good luck in April. I love Florida...hurricanes and all.  Where are you moving from?

sillylilly
Regular Member


Date Joined Oct 2006
Total Posts : 317
   Posted 3/2/2007 5:54 PM (GMT -6)   
I'm glad you wouldn't have to have a bag...I understand what you're saying...I'm fed up and I've only been dealing with GERD since last October. I'm having a good day today but it can turn on a dime for no reason, and I'll just start burning up, even if I haven't eaten any trigger foods. As much as I hate more pills, my doctor put me on Zelnorm for my constipation and it seems to work. I don't know if that would work for you and I wouldn't promote more medicine but you've probably already considered it.

We are moving from Washington state...yes, I'm looking forward to the warm Florida sunshine and no cold winters. I'm not sure how I'll react with my first hurricane or tornado but I'll deal with it if it happens. One reason we chose Palm Coast is because that NE section doesn't get very many direct hits. Maybe I'll see you at the Mayo...best of luck to you....sillylilly

friendlygal
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Date Joined Dec 2006
Total Posts : 722
   Posted 3/3/2007 3:52 PM (GMT -6)   
You guys make me feel bad that I am only 34 (I look 22) and have GERD (since you say that these ailments are just for old people)...

sillylilly
Regular Member


Date Joined Oct 2006
Total Posts : 317
   Posted 3/5/2007 11:22 PM (GMT -6)   

Friendly,....let's hope that once they get your colon situation worked out that your GERD symptoms will disappear..

this condition can make you feel old so I'm glad that you don't look old...hang in there...sillylilly


friendlygal
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Date Joined Dec 2006
Total Posts : 722
   Posted 3/6/2007 1:10 PM (GMT -6)   
sillylilly, thanks so much. yes, i've been feeling old.
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