PPI's no longer working, scared of surgery, need help...

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DC123
New Member


Date Joined Nov 2013
Total Posts : 11
   Posted 11/13/2013 2:03 PM (GMT -6)   
Hi everyone,

This is my first time posting here, and I could use a little support. I'm a 32 yr old male, I've had GERD for about 5-6 yrs now, and have been on OTC Prevacid for the majority of that time. Up until about 3 months ago, it was fairly well controlled and I hardly ever though about it, but for some reason my condition seems to have rapidly deteriorated almost overnight, and the Prevacid no longer works.

After talking with my doctor, he recommended that we do an endoscopy to see what's going on down there, and to my dismay, I have Barrett's Esophagus. Thankfully, it's only at the very base of the tube right where it connects to the stomach, and there is no cell displasia as of yet, but still not something anyone wants to hear.

I was put on 30mg Dexilant 1x/day, which did not work well for me at all. Then, I was put on 40mg Nexium 1x/day, which was better, but still not great. I took that for a couple of weeks before finally switching over to Protonix today, and so far, this is the worst I've felt yet. Of all the PPI's I've tried, this one seems to be the least effective by a substantial margin, as after breakfast I'm already writhing in pain. I'm struggling with whether or not to give it more time, or just go back to the Nexium until I figure out my next move...

At this point, I am strongly considering surgery, but am scared of what it could mean for me long term, and I really don't like the options available right now. The Nissen seems to work well, but carries with it the potential for life-long side effects, possible need for future redo's/tune-ups, and due to the invasive nature of the procedure, the recovery period after surgery is fairly long.

I was interested in the Stretta procedure, but the outcome results seem to be fairly lackluster and inconsistent from what I've read, and my gastroenterologist doesn't think that it's even worth considering. So, the only other options that I see are the Esophyx TIF procedure, or the Linx, and of those two, I think Esophyx sounds more appealing if for no other reason that I would worry about erosion from the Linx device.

I feel so discouraged and depressed right now, and would love to hear from those of you who have had similar experiences and/or the surgeries that I am considering. Thanks so much for taking the time to read my story, and I look forward to getting to know all of you.

David

StephanieJean
Veteran Member


Date Joined Jun 2013
Total Posts : 500
   Posted 11/13/2013 3:18 PM (GMT -6)   
Hi David,
I have been where you are. The prospect of facing surgery is scary and never something anyone takes lightly.
I had a nissen before I was 30. I was worried that being so young, I might have to have it redone in the future. I was worried it wouldnt work, I was worried about the side effects. I was also worried about a lifetime of medication and the prospect of cancer and acid burn on my larynx and constantly regurgitating my food.
There did not seem to be any other option than surgery though, and my doctors agreed.

The Nissen has a great track record, its proven to be effective in many many many cases. We dont hear much from the people who have successful surgeries because they go on with their lives and dont really need to talk about it much on the internet and forums where us scared people look. They just have surgery, and do really well.

My nissen worked really well. The recovery is not the best, but its really not as bad as you might think before you actually go through it. Am I happy I had surgery? Absolutely. Did it work? Yes so far.

It is best not to live too much in the future, the what ifs will ruin you. You need to do what is best for your health here and now. If your doctor thinks a Nissen or other type of reflux surgery is right for you then you should probably really consider taking their advice. GERD can be dangerous for us who have it and can not control it. Long term use of PPIs are also pretty scary. Its just a game of balancing risks.

There are a lot of us on here going through the recovery process and we like to give back to the community by logging in our journals. Please check out mine. Laurie-LJENNER and Denise-DENCHA also have excellent journals documenting their recovery. There are many others as well.

Do not be discouraged. Instead feel relieved that you still have options! You are not a hopeless case :)

Welcome to the forum!
Stephanie

reet22
Regular Member


Date Joined Jan 2013
Total Posts : 146
   Posted 11/13/2013 5:16 PM (GMT -6)   
Hi David I had the nissen operation in 2001 and was fine for 9 years.i am having a few problems now which may be with the wrap or may not be with the wrap tests are being taken but I would do it again in an instant. It is of course a decision only you can make. I wish more people would post on these forums with their positive comments but I suppose to them it is history that they have dealt with and moved on. Good luck with whatever you decide.

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 11/13/2013 6:36 PM (GMT -6)   
David-

Welcome to Healing Well.

I have had Barretts for about 8 years and it hasn't advanced any since then. I had my 1st nissen in '06. I am not the normal nissen patient as I didn't research my surgeon and went in with blind faith he would do it right. Well he didn't that is what caused me to have a redo and started my troubles after that.

Now I have a correct nissen and once I healed I am back to eating and doing anything I want. The only side effect I have is the inability to vomit. I just keep anti nausea meds on hand and that takes care of that.

Remember that Barretts has a very very small chance of advancing when the reflux is under control.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn, Kidney disease

Nissen 6/06 and 5/09
#3 8/24/11

DC123
New Member


Date Joined Nov 2013
Total Posts : 11
   Posted 11/14/2013 2:13 PM (GMT -6)   
Thanks for the replies, everyone - it's nice to know that others have gone through similar experiences. I still don't understand why my condition seems to have worsened almost overnight, though - seems so strange to me. Anyway, it sounds like you are all pretty happy with your Nissen procedures, but Bill, when you say you can't vomit - that freaks me out a little bit. While vomiting is not something that we need to do very often (thankfully), it is necessary from time to time. Are you truly incapable of vomiting? I know there are going to be trade-offs and compromises no matter what route I choose, but I just wish there was another option...

StephanieJean
Veteran Member


Date Joined Jun 2013
Total Posts : 500
   Posted 11/14/2013 2:22 PM (GMT -6)   
Some people are actually able to vomit, some are not. Its very hard on your wrap even if you can.
Having the nausea meds really helps though.

My condition got really bad overnight too. I never really had any problems until April after I moved then I got a terrible sore throat and everything was coming back up. I think moving and lifting made my hiatial hernia worse. It was scary to just wake up one day and not be ok. You wonder if it is something you did.

I kind of liken it to a seal going bad on a car....it can go bad for awhile, but once it reaches a certain point it just doesnt work anymore and that is when you notice its bad. Same thing with your LES...
Stephanie
Lap*Nissen*Fundo 8/2013
Thoracic Outlet Syndrome, Migraines, Anxiety, PCOS

Trump
Regular Member


Date Joined Nov 2013
Total Posts : 71
   Posted 11/14/2013 2:54 PM (GMT -6)   
Hi DC123,

I have been on Protonix since August of this year. I do really well with it, haven't had any problems thus far. I have been trying to ween myself off them onto something more natural. I have GERDS/ hiatal hernia. I'm seeking out more natural approaches myself. However if you need immediate attention for your condition that may not work for you as trying to heal naturally is a process. Good luck with whatever you decide to do. But also research your disease/ illness and see what natural approaches are available to you. The right diet can be an excellent remedy to just about any health problem.

Teacherman
Regular Member


Date Joined Jun 2013
Total Posts : 172
   Posted 11/14/2013 3:58 PM (GMT -6)   
Hi doc, I too have Barrett's. I am 46. Ppi's made my reflux worse for a year. And now I get a bloated feeling.
Generic protonix is not as good as brand name. This has been my experience and others around these sites.
Barrettswessex and john hopkins have good Barrett discussion groups.
Try Gaviscon
Also, I don't know why but for me the ppi's control my heartburn in general but have created issues beyond that. Cancer is the main worry but the odds are very much in our favor.
Do look into the surgeries but I am right there with you. And we should proceed with caution. I go see my doc again next we'd.

DC123
New Member


Date Joined Nov 2013
Total Posts : 11
   Posted 11/14/2013 10:21 PM (GMT -6)   
I think you're right about your analogy with the car seal, Stephanie. We just had a little girl 6 months ago, and with constantly having to bend over to do things like change diapers, I think my LES finally just gave out. I was fine for the first 3 months or so, but I guess it finally caught up to me. :(

Meka, I wish I could do the natural thing - I tried for years to wean myself off the Prevacid, taking it every other day, then every 2 days, trying various supplements, etc., but it always got so bad that I had to go back to daily dosing - I think the Barrett's is probably a result of allowing too many reflux episodes to occur during that time period, so I would be very careful if I were you (I'm right there with you on not wanting to take these meds because of what they can do to us long-term, but it is better to not have Barretts)...

Teacherman, I will try the Gaviscon - thanks for the tip (I've been using Pepcid at night for extra coverage when needed, but hate taking such a strong medicine since I already take 40 mg nexium in the morning). Since you are considering surgery as well, which one are you looking at doing - the nissen, EsophyX, or Linx? Please let me know what you decide on, and if you go through with it, how you feel.

Thanks again everyone!

RobUK74
Regular Member


Date Joined Nov 2013
Total Posts : 24
   Posted 11/16/2013 6:44 AM (GMT -6)   
Hi all

I had to write after reading all of your posts and give you my experience having decided to have the surgery aged 39. I have suffered from acid reflux for over 10 years, and started om gavison, pepcid ac thinking it was just the occasional issue - however I noticed that no matter what I did in controlling what I ate or drank, the exercise I took, or the weight I lost - the reflux simply would not go away. This has lead to me being on prsecribed medication from lanzoprazole to zantac, and in the latter stages the heaviest dose of nexium and zantac. Life was getting pretty miserable.

I noticed that I had begun to vomit up blood and this made me worried so I got my Doctor to refer me to a specialist - a fantastic man and over the past year we have conducted a number of endoscopy and colonoscopy to find out what was going on. The endoscopy showed a raw (literally) esophagus and tract and a faulty valve which was not getting better. After the second endoscopy he also identified Barrett's. After the fourth endoscopy and having used stronger medication to try and control, we both decided it would be a good idea to meet with a surgeon - again a brilliant guy.

The surgeon would not operate immediately, wanting to conduct further tests including bloods, barium swallow and meal, pH and menometry testing. While none were pleasant they all indicated that things were only going to get worse rather than better. In fact when the surgeon showed me my results the acid had got so bad that on the pH testing (24 hours) I was only recording acute reflux even though the results were off the scale for most of the time!

At the same time, an article was written on the bbc website (attached) which really helped me make my mind up. http://www.bbc.co.uk/news/health-22940088

I discussed all the pros and cons with surgeon and decided to go ahead. I'm now 3 weeks post op and whilst the recovery process is slow, absolutely no acid, and feeling so much better than I have been for ages. I hope this helps you, good luck.

lajenner
Regular Member


Date Joined Jul 2013
Total Posts : 349
   Posted 11/16/2013 12:51 PM (GMT -6)   
I agree with the others - get it fixed. The Nissen is not as scary or bad as it sounds. Once fixed, you may be done with the drugs and done with the worry that the barrets will advance.
Laurie
Nissen Fundolplication Sept. 10, 2013

Diaas2
Regular Member


Date Joined Oct 2013
Total Posts : 256
   Posted 11/16/2013 9:33 PM (GMT -6)   
I also agree. I'm really glad I had my surgery. I feel so much better. No more reflux practically at all! Its not as scary as it might sound. I was scared to do it too. But I'm so glad I did it.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/16/2013 11:29 PM (GMT -6)   
I was like you terrified of having the surgery. I was a wimp when it came to anything invasive. I had the surgery about four years ago. I wish I had done it sooner but I've never felt better.
The pain is managable, the diet do able, my wallet was the only thing that suffer major damage. ;))
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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