Nissen Fundoplication

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kittehmom
New Member


Date Joined Aug 2010
Total Posts : 13
   Posted 8/11/2010 1:43 PM (GMT -6)   
Hi - I'm new to this.  I've been reading posts from all of you regarding endo's and colonoscopys and fundoplications and yikes!  I've had the endo and the colonoscopy and yesterday I had a manometry (way to much fun for me) and here is my dilemma...
 
I have asthma and in the last 2 - 3 years it's gotten progressively worse, to the point that I couldn't walk from my bed to my kitchen.  My family physician was pulling his hair out trying to help me; I got so bad so fast he was kind of at a loss as my asthma has always been manageable.  Long boring story short, it turns out I have a hiatal hernia and for  a little over a year nexium controlled the acid reflux etc, but apparently the hiatal hernia has gotten worse and now I'm going to have the nissen fundoplication full wrap...
 
My question is, should I have this surgery?  It sounds to me like some of you are suffering as much if not worse after the surgery.  If it weren't for the horrible effects on my lungs I wouldn't even consider the surgery because of this comments I've read.  I want my quality of life to improve, not get worse.
 
HELP.

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 8/11/2010 2:36 PM (GMT -6)   
Kittehmom,

It's amazing to read your post. Your story is my story, only you've been fortunate enough to have found this forum much earlier than I did.

My story is so similar to yours that you can probably tell it. I had asthma pretty much all my life, with a few "remission" times when it didn't bother me and I didn't need any medications.

Fast forward to about four or five years ago. My family doc and allergy/asthma specialist were both working wonders with me, and my asthma was totally under control. I had some kind of infection and was put on Augmentin, which put my stomach on high alert. My family doc discovered my reflux after my sensitive stomach set acid roiling, and reflux gave me horrible asthma. He put me on Prilosec 20mg AM and PM and sent me on my way.

That worked just fine for a while longer, but as my asthma symptoms (and reflux) got worse, I was moved to Nexium 40mg AM and PM along with Zantac 300 at bedtime.

My asthma did fairly well, but over time I needed more and more medications for it.

about 5 years ago, I took another antibiotic that caused my reflux to increase, and my (already highly medicated lungs) became very bad. Even the nebulizer treatment didn't help. I was hospitalized for a week.

At that time I was put on 40MG Protonix AM and PM.

In the meantime, my asthma is generally getting worse, and is becoming uncontrollable. I went from Flovent 110mcg to Flovent 220mcg, (intermittent addition of Prednosone when things got worse), and my asthma wasn't getting better. I was up to 4 puffs twice a day. A tremendous amount of steroids, and I still wasn't maintaining. By the time I had the surgery, even intermittent boosts of prednosone wasn't doing any good.

Fast Forward to December 2009. My asthma had been out of control for at least 2 years, and I was coughing constantly. In August of 2009, my family doc finally gave up on the GI docs (yes I had a hiatus hernia, and yes I had reflux (not enough in their estimation to warrant surgery) and he referred me to a thoracic surgeon of his own. The surgeon did an endoscopy and a barium swallow. Since he trusted my family doc, he told me I was a good candidate for surgery.

In the meantime my family doc and asthma doc have told me that I'm the best they can get me. I can't have any additional steroids either inhaled or oral.

I went to my GI doc with the information from the surgeon, and he gave me an additional PH monitor test...I came out with a score of 14--another very non-impressive result. This time, though, he decided to believe all the messages from my family and asthma docs, and said I might be getting enough acid or bile to cause trouble for my lungs. He told me I could continue on meds (they haven't been helping me to this point, so why would I choose that option?) or talk to the surgeon.

My family doc had told me that this was life threatening. On top of that, I had taken so many steroids for so long, I had symptoms of Adrenal Insufficiency (which, by the way, I still have, because my body is still suffering the results of the fight to keep my lungs working) I have very fragile skin that bruises and tears with very little stress. I can tear my skin opening a paper bag. This is a direct result on all the steroids I needed to keep my lungs open.

I coughed constantly. I nebulized daily.

Kittehmom,
I hope you haven't gotten to that point yet. Hindsight is 20-20, but I'd give anything to turn the clock back and have the surgery sooner, before I had all these permanent physical problems.

I had the surgery in February 2009, because I had gotten to the point where I had to give it a try. Nothing else was working, and my doctors were sure it would help my asthma. The GI doc and surgeon weren't sure, and weren't making any promises. Still, I couldn't go on with uncontrolled asthma.

(Actually, this forum, with all it's wonderful and experienced members, gave me the courage I needed to move forward with the surgery. They offered positive yet realistic advice and information. They were incredibly caring and helpful. That's why I continue participating here...I want to "pay it forward". They helped me, and I'm hoping I can help someone else.)

Just before the scheduled surgery, I got a lung infection (again). Since my lungs were constantly bad, and the surgery was to be done to help them get better, they couldn't wait for my lungs to improve to do the surgery. It was a Catch 22, for sure.

I had the surgery (and was put on high doses of steroids, because of my adrenal insufficiency. I could have gone into shock without them. This was because I had been on steroids so long and at such high doses, to keep me breathing).

I still had a lung infection post surgery, and spent two months more nebulizing and coughing my guts out. Literally.

The surgeon had said that my internal tissue was so fragile because of the steroids I'd taken for so long, he was fearful that the stitches wouldn't hold, so he added more.

Technically, you're supposed to try not to cough post Nissen, because it puts too much strain on the repair, until it has had time to heal.

I didn't have a choice, since my lungs had gotten so bad because of the reflux. My husband did lung PT for me to help me move the mucous out.

Finally, after about 2 and a half months of that--even in the middle of pollen season, my lungs improved. I no longer needed to nebulize. My lungs continued to improve, and are still much, much better than they were.

That said, because of all my coughing, something has happened to my wrap (not seen on a barium swallow) that has caused me to get some reflux. I had a bad cold before Christmastime this year, and coughed so much that I think I finished the job, and some reflux started.

I'm still taking half the inhaled steroids I was on before the surgery and have done really well. I haven't had to take any oral prednosone (knock on wood) since surgery either. My new asthma doc (I moved) reduced my inhaled steroid further a couple weeks ago because my lungs were 100%, but that reduction has caused my asthma to deteriorate a bit. Still nothing like before surgery. I'm back on the dose I was taking before he cut it, and am getting better little by little.

I know your struggle. I read all the scary posts online, and was very fearful of the surgery. I was ready for anything, believe me. I knew, though, that I couldn't go on living with uncontrolled asthma, and I had to at least try the surgery. If it didn't work, at least we could rule that out.

But it did work. It worked great, even for me, who waited way too long, and had too many things going against me to have it fully successful.

That said, I'd have a redo in a heartbeat if it turns out I need it. I only wish I'd found the people at this forum earlier, so would have had the courage to have the surgery years earlier.

Don't wait until you're in my situation. You're doing the right thing. Those of us with asthma don't have the luxury of just maintaining our GERD on medications. I wish we did, but we don't.

Be sure to pick an excellent surgeon, and get it done before you end up like me!

Yes, there are some quirks that occur because of the surgery, but those are so much better than trying to live with uncontrolled asthma.

We drew the short straw, but that's life. Take care of yourself!
We're here to help you through. If you have any questions at all, let me know. The recovery from surgery wasn't even close to what I had prepared for. There are lots of experienced members here who can provide you with information and support.

Good luck with making that difficult decision. Please consider my experience, and don't wait like I did. Courage! You can do it!

Take care,
Denise

Moo'sMum
Regular Member


Date Joined Apr 2010
Total Posts : 234
   Posted 8/11/2010 2:44 PM (GMT -6)   
As other people have said on here the horror stories are only a small percentage of people who have had the operation. The 1000's of people who have had no probs don't post so it makes it seem like a really scary op. I read lots of scary stuff about gallbladder surgery just before I had mine out that scared the pants off me but luckily know a few people who have had it done and have no probs at all. Any operation is going to take time to get over so make sure you have lots of willing helpers to help get you through the non lifting stages and the weakness stages afterwards. Good luck Kittehmom it'll all work out fine.

kittehmom
New Member


Date Joined Aug 2010
Total Posts : 13
   Posted 8/11/2010 4:13 PM (GMT -6)   
Denise / Moo'sMum
Thanks for the posts. I can't believe how much better I feel just getting some encouragement. A lot of people around me can't believe that "heartburn" has caused so much trouble for me. I am using my nebulizer 3 times a day and if I'm out (not often) I use my rescue inhaler. I was on prednisone for 1 1/2 years and just recently tapered off in anticipation of the surgery. I've gained 55 lbs in a year and a half from using prednisone and being so inactive. The weight aggrevates the hiatal hernia, the hiatal hernia aggrevates the GERD, the GERD aggrevates the asthma and I am just so worn out. I met my surgeon last week, he was highly recommended by my GI, who was highly recommended by my primary. The only question I asked him was how fast he could do the surgery! Until I started reading some of the more negative posts, I was confident that I was making the right decision. My primary physician has driven this bus towards surgery; he sent me to a pulmonary specialist at a internationally known diagnostic clinic and they told me to take nexium, sleep sitting up and have a nice day! Since that time that's what I've been doing, but that is all I do. I can feel my stomach moving up even when I stand up now, so its time to do the surgery.

I do have questions tho' - will I ever be able to eat normally and I don't mean overeat just eat. Is the gas as bad as I've heard and does that particular effect go away, is it controllable? Am I trading one set of problems for another? I would just like to be able to go out to dinner and make love without barfing down my poor husbands back!! Am I condemned to forever sleeping sitting up (which I cannot do). I liked my endo and colonoscopy because I got to sleep.

Sorry to sound like such a whiner :)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/11/2010 4:57 PM (GMT -6)   
I had my surgery back in December. It was the 270 degree wrap. Today I eat normal foods, I can burp, the toots have almost gone, and I sleep laying flat.
I, too, was a person with asthma. I felt like I was coughing my head off all the time for three years. I got where I was almost cursing after every cough, it was that annoying.
I'm glad I had the surgery.
Joy

Problems too numerous to name. :)

Moo'sMum
Regular Member


Date Joined Apr 2010
Total Posts : 234
   Posted 8/11/2010 5:10 PM (GMT -6)   
You don't sound like a whiner. We all understand how you feel. GERD makes you desparate and not normal anymore! That's why this forum is so great because everyone here totally understands the desparation! The people who can't believe what "Heartburn" has done to you have never had more than a slight bit of indigestion before.

kittehmom
New Member


Date Joined Aug 2010
Total Posts : 13
   Posted 8/13/2010 5:33 AM (GMT -6)   
Good Morning and thanks to all. I'm kind of depressed; I went to the pulmonary specialist yesterday and he warned me that this surgery will increase my shortness of breath for up to 6 months due to the swelling and that I would probably end up on high doses of steroids again, at least temporarily and possibly permanently. Part of the reason I've elected for this surgery (or thought I was electing) was to stay off of prednisone. Prednisone caused me to gain 55 lbs in 1 1/2. He also said my lung function is 60% and that I have permanent damage to my lungs. I haven't been to this doc before and he really sccared me. He said that I will probably be on a ventalator for longer than most patients having the fundoplication due to the condition of my lungs. He was very negative about the surgery and then told me I didn't have a choice, I had to have the surgery because the GERD was damaging my lungs daily. I hate the d--m if you do, d--m if you don't scenario. I won't be going back to him because I didn't like his manner and he seemed like such a negative person in general. I'm going back to my primary Tuesday to get some answers and prescriptions for all my med's in liquid form. My poor husband is as scared as I am. I know he's wondering if I'll ever be worth a dang ever again. Okay, done boo-hooing, I'm off to the presurgery ekg and blood work. Despite Dr. Negatives outlook, I'm going to continue to look at this as a positive move in the right direction and I'll deal with the facts as they appear. I hope all of you have a wonderful day, full of cheer and love
C

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 8/13/2010 9:37 AM (GMT -6)   
kittehmom-
That was just one doctors opinion. I don't see how cutting off the acid will make your lungs worse or how swelling around the LES area will either. Joy, Denise, and Barb know better than me though. Please relax and not let that one doctor get to you. I have been through it twice and would do it again without hesitating if need be. Stick around and we will help all we can to get you AND your hubby through this.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 8/13/2010 10:59 AM (GMT -6)   
Dear Kittehmom,
My new asthma doctor (we moved) hates GI docs because they don't understand the connection between GERD and asthma.  I, too, was nebulizing 3 times a day before surgery, and my doctors had me on high doses of prednosone.  For you it has been two years, not over four years as it was in my case.
 
When you first have the surgery done, you probably won't notice the improvement instantaneously.  Like me, the acid has created extreme inflammation of your lung tissue.  Don't be discouraged.  It will take months for the lungs to heal and improve.
 
I wouldn't worry about what your pulmonologist says.  He/she has no real idea of what your reaction to the surgery will be.  It's a known unknown.  If pushed, your pulmonologist would admit that it's a guess.  An educated one, but a guess all the same.  Keep a positive attitude, and don't let anyone discourage you regarding the outcome.
 
I also was frightened by the hysterical posts warning all to stay way from the surgery.  Keep in mind that most people have the surgery, and go on with their lives without ever posting on the internet.  Those people who had incompetent surgeons and ended up with severe side effects went online to find answers to their problems.  Yes, in the wrong hands, this surgery can cause a lot of problems.  That's why it's so important for you to choose your surgeon carefully.
I have included thoughts about the negative posts you see on the internet on Rummaan's thread, "Heartburn Worse After Nissen".  Scroll down and you'll see it.  No sense in repeating it here.
 
Does this surgery create changes in your GI tract that can be annoying?  I won't lie.  The answer is yes.  I can't eat lots of carrot and celery sticks or dinner entree salads without irritating my wrap.  I now take Beano before eating high gas foods.  My BM's can be a variety of consistencies over time.  Water kind of sits in the bottom of my esophagus and drains out gradually (when I drink quickly).  I still have to eat slowly and chew my foods carefully.
 
None of these things are as bad as what I was going through pre surgery.  From what I read in your description of your lung issues, you will look on any changes in your GI tract as far superior to the h### you were suffering before you had the surgery.
 
I was also worried about having general anesthesia due to my asthma.  I'd read that it is a complicating factor.  I happen to have a friend who is a nurse anesthetist, and he said that they have medicines they put into the anesthesia to help ensure breathing doesn't become a problem.  My asthma doc ordered a nebulizer treatment just prior to surgery.  Because I'd been on high doses of steroids and showed signs of adrenal insufficiency, they gave me a boost of prednosone as well.  Apparently you can go into shock or something, if you don't have enough cortisol in your system during a stressor like surgery.
 
I had no problems whatsoever with the anesthesia.  I worried for nothing. 
 
I had a GI doc who helped me not at all when my docs first started sending me to a GI to see about taking care of my GERD via surgery.  My first GI doc had only negative things to say about the Nissen surgery (as well as the new alternatives).  He did nothing to help me, and his attitude was very cocky.  He never really listened to me, and told me that I couldn't possibly be having the problems I described to him.
 
I went to another GI doc who did some testing.  He determined that there was no way my reflux was causing my asthma to be uncontrollable.  All this time, my family doc of 20+ years was sure that it was. 
 
What I'm saying is...don't let your pulmonologist scare you or deter you from going forward.  Definitely find another one more well suited to your situation and needs.  I have to have docs who will truly listen to me and treat me with respect.  It sounds as if you do too.
 
You will be able to eat normally.  We went on vacation at four months post op, and I ate totally normally.  In the beginning, due to stomach/wrap swelling, you'll not be able to eat much at all.  On the bright side, you'll easily lose some weight.  However, if you go back to normal eating you'll have to be careful not to eat too much, or you'll gain all that weight right back. 
 
If you read the information I reposted on Rummaan's thread, It'll take you through the first weeks of my recovery.  It was not nearly as hard as I'd expected.  Sure there are some challenges in the early weeks, but I was prepared for much worse.  Fortunately for me, my surgeon trusts his patients to make responsible eating choices, and gives permission to eat anything that can be chewed to a liquid.  He warned against bread and steak, etc. and also warned that some things might feel stuck, but would go down with drinking liquids.  I never had anything "stuck" in the early weeks, since I was very careful to choose food that would be chewed to a liquid.  Later on, I swallowed a cherry tomato without really chewing it enough, and had to wash it down with water and tea.  It's not really that big of a deal, though.
 
Anyway, I've rambled on enough.  Just don't worry about the changes.  If you have an excellent surgeon, things will be fine.  Even with the difficulties I've had that were brought on by coughing and steroids, I still feel far, far better than I did pre-surgery, and I'm happy with the results.
 
Good luck with the surgery.  You'll be able live a normal life afterwards--unlike what you're dealing with now.  My new asthma doc hates GI docs for their lack of knowledge regarding the link between asthma and GERD.  He thinks they rely far too much on tests and their results, and not enough on observation and talking to patients.
 
Take care, Kittehmom.   Stop worrying and make that move towards a healthier and more normal life!
Denise

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/13/2010 6:44 PM (GMT -6)   
My first GI was saying the same things Denise's was. I found a second opinion and he said he could help me. Today I'm reflux free and my lungs are in good shape.
Joy

Problems too numerous to name. :)
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