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calling all wrapped members and lpr sufferers please help!

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GERD & Acid Reflux
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Posted 3/4/2012 5:57 PM (GMT 0)
I know many of you have heard my story 100 times.  Joy, Bill, Denise and others I desperately need some advice.  This LPR has literally made me question whether I want to live.  I know I know.  Going to see a psychiatrist this week.  So here is what is going on I had LPR diagnosis in 2009, but had symptoms for a year before but the doctor I was seeing did not understand lpr.  Pre-op I had a very bad sore throat, constant throat clearing and horrible globus that made me feel like i was choking.  I weighed 130.  After surgery It took 6 to 8 weeks and the globus completely disappeared.  My sore throat was once or twice a week not every day, but my throat still was red never returned to the nice pink color.  For all lpr sufferers after meds or a nissen if your throat is still red or wont heal your throat is still getting reflux.  For me I was able to eat more fat, ice cream, chocolate and even margaritas....never a ton but some.  Things started getting worse 1 year post op.  Impedance a month after surgery vs. 1 year out shows my reflux has tripled over one year post op.  most of my reflux is non acid.  now the doctor says I have bile reflux as my stomach has been filled with bile the last 2 scopes.  So here is where i need your help.  I want a new wrap, but they say mine is intact..but i know it is not as tight.  Bill you have had 3 wraps.  were the first 2 not tight enough and how are you now.  Denise you had atypical symptoms and I think questioned your wrap, but you only had 1..how is it going.  Are there any new treatments for lpr or ways to help the upper sphincter keep acid down out of throat.  for lpr its cuz we get the reflux in our throats.  anyone know how to stop that.  im not sure another wrap will help, but i want to be better.  anyone with lpr have nissen a second time with any results or is it a waste and we just suffer
Posted 3/4/2012 9:53 PM (GMT 0)
Joe-

My first nissen was done wrong and had too much tension to work properly. My 2nd one was perfect, but destroyed in order to repair the hole in my esophagus.
My last redo last August is doing great. My last 2 were done as "floppy" no tension wraps( that's what both surgeons called them) Maybe it's possible yours has scarred and now has to much tension to work properly. I would seek a couple more opinions. Sure you may have to endure more tests, but would be worth finding out what is going on.

Take care,
Bill devil
Posted 3/4/2012 10:02 PM (GMT 0)
Joe,

I'm not sure how much help I can be to you cause I believe I'm in a very similar boat.

Here's my story:

My LPR/GERD symptoms started last May. I seen many GI's and ENT's only to diagnose me with "GERD." Medicines provided little help so the next option was Nissen.

I'm almost finished with my 4th week of recovery. Honestly, if I couldn't see the redness in my throat, any signs of dental erosion, or even some redness on my lips, I would be pretty happy. But these visible signs make doubt the successfulness of the surgery.

I hope within time it will get better. I do believe I am better off pre op but I think the trouble is that I always compare myself to when I was feeling 100%. Those of us with unresolved GERD....or even LPR, get real down....I mean real down.....yes to the point of whether we can live like this or sometimes. You have to believe there is hope.......it's hard...trust me...I know what you are talking about.

I myself seen several psychs but they did little to help me pre op. I'm thinking of seeing one for post op. Honestly the only thing that would flip the switch would be to see some signs of improvement if you know what I mean. I have an appointment with my ENT to see the condition of my mouth and throat. Hopefully its not too bad. For some reason I don't think it's better than pre op but we'll see.

Hang in there, there are a few of us out there with these odd atypical symptoms so we gotta stick together.

Good luck Joe.
Posted 3/4/2012 11:19 PM (GMT 0)
maximus..i know you wonder if u can carry on.  i have had bad thoughts to end the pain.  im like you i can see the back of my throat is very red and can feel the thickness of the burn.  if i had no pain or my throat wasnt so red id feel better.  i hope your nissen kick in for you.  i also get chapped lips and have that horribly burned throat.

Posted 3/4/2012 11:24 PM (GMT 0)
So is the chapped lips from the LPR you think?
Posted 3/4/2012 11:26 PM (GMT 0)
Joe you said you got some relief from NF correct?
Posted 3/4/2012 11:32 PM (GMT 0)
Hi Joe,

Sorry to hear you're struggling.  I do think you're very wise to seek help to make it through this rough patch.  It's stressful, I'm sure.

Since LPR symptoms and allergy are very similar, my asthma doc did send me to a highly acclaimed ENT to check out my larnyx a year ago last Fall.  I continued/continue to have some hoarseness, and my allergist suspected it was caused by continued reflux.  He seemed to think the ENT would be able to decide if my larnyx was affected by reflux or not.  The ENT did not think it looked like reflux, but rather a result of allergic coughing.  However, since I was under the care of  an allergist, he referred me to "the surgeon who does all the Nissens" for a work-up.

I had the testing, and the surgeon said that everything was intact and working just fine. 

My PCP said that he would never recommend any other surgeon than the one I'd seen, and that if I thought I needed another opinion I should go to a center (Cleveland Clinic, etc.)

Anyway, I really didn't think I was refluxing (when I had my PH test pre-op, I was suffering greatly from refluxing when I was off PPIs...when I had it done post-op, I had no reflux, and was very comfortable.)  Plus, although I still have enough allergic (presumably) coughing to cause hoarseness, my lungs are 99% better.  I could say 100% but I suppose that's unrealistic, since I do have allergic asthma at times. 

As Bill said, it looks like you would benefit from trying to get a second and third opinion, to see if you can find someone willing to redo a wrap for you, that appears "intact".  When Bill had his second redo, the surgeon couldn't really figure out what was wrong until he got into the surgery an discovered it had been done incorrectly.

If you're having bile reflux, it certainly makes sense to try to get a tighter wrap, since it's the only thing you can do to stop it.  I'm confident that there's someone out there who can help you.  If you can get a tighter wrap, you might trade off some other symptoms, though...more bloating, tighter swallowing issues, etc.  But if you can get relief from your LPR symptoms, it would be worth it.

As far as I know, the only way to keep reflux out of your throat is to keep it in your stomach with a Nissen.

Wish I could offer more information and help!

We're with you, Joe.

Hang in there.

Denise

Posted 3/4/2012 11:39 PM (GMT 0)
Denise,

How does waiting improve the symptoms we seem to be feeling? I know people say wait a month, then two months, then six months....but how does waiting help the condition?

Does it have something to do with the swelling? Will the wrap get tighter? I would think the swelling would cause the wrap to get tighter no? That's why we have a hard time eating early on in the recovery?

I don't know. I think all of us who are still dealing with symptoms just are looking for answers....

Thanks denise
Posted 3/4/2012 11:47 PM (GMT 0)
Have you've discussed the Roux-en-Y surgery with your doctor?
Surgeons have successfully used a procedure called a Roux-en-Y (roo-en-wi) operation to treat bile reflux in people who have had previous gastric surgery with pylorus removal (Billroth I or Billroth II). In this procedure, surgeons make a new connection for bile drainage farther down in the intestine, thereby diverting bile away from the stomach.

Try this link to the mayoclinic information:
http://www.mayoclinic.com/health/bile-reflux/DS00651/DSECTION=treatments-and-drugs
Posted 3/4/2012 11:48 PM (GMT 0)
Dear Joe,

Hey my friend,  I am sorry your having a tough time but I believe in you and I know even when you are wondering how you are going to keep dealing with your problems you will find a way.  As you know I have not had the surgery and I don't suffer from GERD nearly as bad as you do or many others here but I have been battling my depression and anxiety for 6 long years.  Just today I sat with my hubby as I cried tears of sadness and fear wondering how I  was going to keep going and what was the point when I cannot enjoy life like I used to.

My hubby looks at me and tells me - you cannot just give up.  You have to get mad and just make it through each valley no matter how bad you feel.  I understand your emotions and how sad this whole disease process makes you feel, Joe, but remember the world is a better place because you live and serve within it.  

When I read the posts here in your thread just now my first thought was - hey guys, none of us are going to give up as we are survivors and we will handle whatever is thrown our way. 

"When everything seems to be going against you, remember that the airplane takes off against the wind, not with it." - Henry Ford

You are someone special in my life, you are a friend that I can come here and talk to so know I am always here to listen as well.

I wish you peace,

Kitt

Posted 3/31/2012 8:14 PM (GMT 0)
thx everyone. i have got some seroquel to help me sleep but it dries out my mouth causing more throat pain. grr. without the seroquel i dont sleep and anxiety is real bad. any tips. i swig carafate in my throat as an analgesic. temporary relief. i have to take 400 to 500 mgs im that much of a wreck the valium is a joke i could take 50mg with no relief 6 months ago 300 seroquel helped and my throat was fine..well better. everyone ill keep you posted im searching high and low for the miracle cure for lpr any news ill let you all know
Posted 4/1/2012 5:18 AM (GMT 0)
I'd be concerned about the bile reflux. A wrap redo won't fix that part. Is there anything they can do for your bile reflux? Have they tested your liver, pancreas and gallbladder?
Posted 4/1/2012 1:01 PM (GMT 0)
Joe

I can relate to the emotions that you are having. At the start of my LPR the pain was incredible.

LPR is not well understood by the doctors yet. Surgery seems to only have a coin flip success rate.

My advice, why dont u focus on things you can control like diet. I have read your post that you been eating ice cream and other possible reflux triggers.

When I was suffering bad foods was the first thing I cut out.

Perhaps with diet changes and ppi you will get some relif.

Post Edited (sk55) : 4/1/2012 7:47:19 AM (GMT-6)

Posted 4/1/2012 1:17 PM (GMT 0)
Hi Nal,

You've probably looked everywhere on the internet for answers, and I expect you've seen this information, but just in case...

http://www.mayoclinic.com/health/bile-reflux/DS00651/DSECTION=treatments-and-drugs

Good luck with your quest for answers...

Denise

Posted 4/1/2012 4:40 PM (GMT 0)
I am confused.  Did your LPR get worse after Nissan?
Posted 4/3/2012 1:23 AM (GMT 0)
Hello all,

I had my nissen op 1 month ago today. On my second week I felt what I thought was gerd, but it did not feel the same. I did however feel my throat burning. I noticed that when I slept face up I felt the symptoms of gerd, but when I sleep face down the symptoms do not appear. The strage thing is that if I sleep on my right side no symptoms, but on my left side I do get the symptoms.
Has anyone else felt anything like that?

@Joe. I hope you feel better, I know what it is to suffer with this condition. I've been taking ppis for almost 5 years prior to my surgery. I would've continued had I not developed osteopoenia and broke a metatarsis on my right foot. That is what prompted me to seek anything but more pills. I seriously got sick of all meds. I hope you get relief soon. At times it felt like I was eating hot coals. I read some folks drink aloe vera juice for relief. I know it helps with healing sun burn. Maybe it will help you. I'm not an expert on any of this, but I hate to see anyone going through what you're going through.

I'm starting to consider changing my diet to more softer foods after reading a lot of the posts, eventhough I can pretty much eat anything at 4 weeks post op. My surgeon told me to chew everything pretty slowly and to swallow my food when it was very mushy in my mouth.
Any advice on exercises? My dr told me to walk and jog, but I like to know if any of you did any lifting or push ups or anything physical like that how long after the surgery?

Thank you all.

Glad to find a forum like this one.

ARG58
Posted 4/3/2012 8:54 PM (GMT 0)
u can exercise.  i ran and swam within a couple months.  the first months i just walked.  after a couple months i was running.  i suffered no ill effects.  it is the diet that gets me
Posted 4/3/2012 8:56 PM (GMT 0)
Hi ARG,

Welcome to the Healing Well yeah yeah yeah Wrapped Club! yeah yeah yeah As my surgeon told me, during the early weeks of recovery "pretty much anything is possible". 

Your insides are still very busy healing, and positioning while sleeping can create pressure or pulling, depending on how you're lying.  Believe it or not, at 3 years post-op, I can still get some pulling if I lie on my left side for a long time.  It'll wake me right up.  When I change positions I'm just fine.  I suspect that while I was healing I was always on my back, and it's possible there is an adhesion that pulls after some hours lying on my side.  No big deal.  It sure beats the alternative!

At one month post-op you are definitely at the infancy of your recovery.  You are wise to listen to your stomach and wrap when deciding what to eat.  Stay away from lettuce and raw veggies...no matter how much you chew them, they can be irritating.  Also avoid untoasted bread, sandwiches, and steak.

Like yours, my surgeon set me free to eat "anything that could be chewed to a liquid".  I was very happy, as I enjoy eating and would far rather puree my foods in my own mouth than in a blender!  He did outlaw untoasted bread, sandwiches, and steak, though. 

Do take the "small bites and chew, chew, chew" mantra seriously.  It'll avoid a lot of discomfort and aid in your healing.

Glad you've joined us!  It would be great if you'd copy and paste your post into a new thread and make up a title to introduce yourself.  Here's a link to the main page:GERD - Heartburn .

Happy healing!

Denise

Posted 4/4/2012 11:19 AM (GMT 0)
Thanks, Joe. Btw, Have you tried eating smaller meals especially after 5 and nothing after 7 -8 PM. My doctor suggested nothing after 8 and at least 3 hours of digestion before going to bed. I know you probably heard it all and I'm sorry if I'm being repetitive, but you never know.

I hope you're feeling better.

Aldo
Posted 4/4/2012 11:25 AM (GMT 0)
Hi Denise,

Thank you. I followed your advice and created a new post. I love salads, but you are right leafy vegs are hard to swallow. I can't wait to have a nice burrito, but judging from the posts I've read not for at least another 2 -3 months. :-)

thank you for welcoming me.

Aldo

 

Posted 4/4/2012 8:48 PM (GMT 0)
aldo everyone is different. rice would get me even 6 months after op. it hurt but i felt good cuz i knew my wrap was working. i eat thick doughy breads almonds, etc. only the rice got me. thick meat got me after op, but now very very rarely rice, but i could eat a chair i think, but i think my wrap is looser than i wished just go slowly. i was eating baby food for 6 weeks. 2 months though i was eating burritos..literally, taco salads etc.. just listen to your body and chew chew chew :)
Posted 8/6/2013 5:58 PM (GMT 0)
Hi ARG,

I am having the same symptons. If I lay on my left side i feel like i'm having gerd symptons. if i lay on my right i don't feel anything. My doctor told me that it is not food coming up but food that has not yet entered into the stomach. he said since i had  hernia and reflux for a long time and now that everything is back like it suppose to be, my esophagus has to learn how to work all over again. he said give it time and i should see some improvement. i ha my surgery 6/12/2013.

pennie

:-)

 

Posted 8/6/2013 6:12 PM (GMT 0)
I'm new to this post. I had my herina repair and wrap june 12,2013. still feel like i have reflux but doctor said what i'm feeling is food that have not made it to the stomach. he said everything has to learn to work all over again because he did a lot of work inside. he said everything is tight but not to tight. as time go on things will grdually return back to normal. it's lik taking baby steps so i have to be patient.

 

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