what is up with the large amount of Nissen surgery failures??? Part 1 of 2

Hi guys,

1.   Wow!!  I can't believe you guys are awesome.  I have an hour before I have to leave for work (I was actually thinking about going to the emergency room last night I had such a hard time) and then I remembered that there is nothing "immediate" for my pains so I just kept waking up and trying to go back to sleep or watching tv.  I hate having to feel so bad and I have been working less which kills me because not only to I love to work and keep active but of course we all have our bills to pay.  I am a CNA who does private homehealth care so I also have to pay my own health insurance which is not only expensive but I found out doesn't cover much which is why I'm considering switching if possible with pre-existing.    I do have a boyfreind of 15 years but he isn't too supportive or emotional but he has diabetes and his own concerns (we had a fire recently and are in litigation with the insurance company), so I can understand although I really could use some support right now.

       Denise, I had the same thing about my symptoms not being "real", I even work for a Doctor from a Chicago University that tells me there is ino such thing as acid reflux and that I need to learn to relax.  Okay, that's why it feels as though someone spilled a bottle of shampoo in my mouth 24/7 and my stomach looks like Winnie The Pooh which Thank God I can hide but I just feel sooooo bloated!!  Good for your Asthma doc for sticking up for you.  I also had my gastro tell me it was not possible that 80mg of nexium was not working.  He always looked so confused when I would tell him of the "clicking" sound when I swallow, the awful burning (even my tongue) , the sour taste, and the uncomfortableness when i swallow let alone the bloated deal.  I was diagnosed (endoscopy) with gastritis, esophogitis, gerd, and hiatel hernia but that was 3 years ago.  Lord knows what I have now and really don't want to know but with the sour taste I'm kinda losing my mind.  I even had an ent look at me and when I opened my mouth the acid gurgled.  I said "did you hear that?", and he said, "I heard it and see it", I was actually relieved that someone beleived me.  The only tests I ever had were 2 endoscopys because after I talked to the surgeon and he was so negative, I didn't pursue much else.  You said you were given results from your 2nd endosopy but what happened on your first?  Thanks so much for your reply.  

      Barb, your not going to believe this but I was talking to a girl yesterday who told me she went to the emergency room 10 times in one month with very similiar symptoms and they ended up taking her gallbladdar out and she never had another problem.  I am going to look into that depending on cost excetera.  Obviously you have bloating problems also, does gasx help??  I think I'm going to try to get some todaY because that is another symptom that is really bothering me.  I'm so happy you have a good gynecologist.  I hear you about doctors, I deal with some and there are some good ones out there, but I have only met a few.  I don't mean to sound negative about doctors but i have had a different story from each one.  Example:  One told me if the meds don't work in 2 weeks they never will.  Another told me that it could take a year at 80mg to do any help.  Another told me even if it doesn't "feel" like it's working it's still neutralizing the acid.   anyhow, thanks so much for your reply.  

    Bill,  I've been to Loyola also and one ent I had there transferred to Rush.  I don't go to him anymore (currently seeing a doc from u of c) but would like to know who you see at Loyola?  One of the surgeons I talked to there was from Alton, Illinois.  I can't remember his name but if you named a few, I might remember.  I'm so glad you are getting help there.   Depending on cost, etc. I have to see what my options are.  My best freind (she died in a car accident) use to be a radiologist there and another one my freinds mom worked in admin there for quite awhile and just retired so you are in the right place.   Thanks so much for your reply.

    Marie,  Thanks so much for your prayers and well wishes.  It sounds like you may well be on your way to some relief.  I know surgery sounds like it has it's bad sides also but if it can help your symptoms and you weigh the pros and cons and pray on it..you will be fine.  Postive attitude and faith have a lot to do with recovery that's what scares me.  I am so helpful with others and positive (I have families thanking me all the time for the care I give their loved ones) but when it comes to helping myself I have to be "pushed".  I feel awful because my 73 year old mother (she still works and is very youthful) is very concerned about me and I can't hide things from her.  When she calls to see how i am, I cry and I know that makes her feel bad and I guess if it wasn't for her, I wouldn't go to the doc at all because of the bad past experience.  Also, I'm the caregiver in my relationship and wont get much support from my boyfreind, and I don't want to worry my parents because I want to be the one looking out for them.   I'm kinda the financial support in my relationship (my boyfreinds business has been very slow) and I guess I'm scared what will happen if i had to take off for any amount of time.  Anyhow, I guess I really needed a shoulder today and I so appreciate your reply and everyone listening.  Thank God for your lovely daughter, I'm so glad you have her to brighten up your day. 

   Again, thanks so much for your prompt reply guys.  Boy could I use it.  It helped me put a better outlook to my day.  You'll probably hear me say "I was going to" alot.  Like, I was going to go wait in line at a county hospital because I talked to a doctor I work for who knows I pay for a terrible insurance policy which I have to pay most things out of pocket and the doc I work for said that they have good docs at the county and I should see what they can do to help.  Thing is, it seems that at least with some type of insurance I am able to get appointments.  Some docs won't accept you if you don't have insurance.   But it's like double paying.  You pay for insurance that doesn't really pay much and then you still get the bills.  I know I probably sound stupied but like I said, I'm much better at taking care of others than myself.  Have a good day and thanks so much for listeining.  - Tracy 

Tracy I've heard all those things from different doctors. My current GI doc told me a number of those things. I don't see how saliva could burn the crap out of my esophagus and make my sinus bleed so I have no confidence in him at all any more. Right now my problems seem to be under control. My gas right now is from my surgery still because they have to fill you with air to lift the stomach wall off the organs and the doctor tries to push out as much as possible but what is left takes a long time to get rid of. When my gastritis is really bad the gas and bloating is really bad. I know from the past that any little bit of worrying or stress can make my stomach really bad also. I finally came to a point where I figured it out that it was just making more problems for me. I would worry my self into awful stomach pain that doubled me over. I try not to let any thing stress me out which isn't always easy to do. It took time and age to learn these things. Don't let any doctor tell you that it is all in your head though because there is no way all the problems you are having are not real and there tests are wrong at times as I well know. I had one done during the time I had the 24/7 heart burn and they said it wasn't bad enough for surgery and a few weeks later they found it was my galbladder. I still ended up having the nissan done 4 months later when they repeated the PH study and that time it showed that I had hundreds of episodes of acid reflux in a 24hr period of time.  

I was as bad as you and Marie are now when my galbladder was taken out. I was depressed because I was so sick and they couldn't find any thing at all that helped. I couldn't eat or drink any thing. I had numerous trips to the ER to get an IV because I was so dehydrated. My doctor finaly ordered that other test when I called his office in tears because I had tried to eat something and the pain was awful and I couldn't take it any more. As soon as they took out the galbladder I felt alot better. I still had the heart burn at night but at least the nausea and 24/7 heartburn and pain were gone. So get on your doctor about doing that test for galbladder function.

Hey Bill I don't know if you have tried this but I have to drink water in between each swallow of food if it's any thing like bread, cake, pancakes, or chicken. I can not eat any thing with out drinking at least half a glass of water after or it just sits in my esophagus no matter what it is. Let me know if you do that or if it helps. I hope it helps you. Barb

Bill that sounds like the same thing I have to do. If I take too big a swallow of water or food it really hurts trying to go down. I try to chew my food real good too as it seems to help in my case. When my GERD was really bad in January I couldn't swallow food or pills because my throat was swollen and they actually got stuck to point of me choking. I lived on hot cereal and mashed potatoes until it cleared up and improved so I can just imagine the awful time you are having. I'm glad that you found some one that would listen to you at last. I know it's no fun when you are suffering with some thing and you just keep getting the same advice that doesn't seem to help at all. When I had my barium swallow done about a year after my surgery I had to swallow a bunch of times before it would all go down so the surgeon at that time said if I continued to have problems that they would have to go in and loosen it. I never went back because after having those 2 surgeries in one year that was enough for me plus I didn't like the idea of more acid coming back up again so I figured if I could live with it why bother with surgery again. How was your ball game? Hope you had fun. Barb

Barb -thank you, I am going to talk to my doctor regarding to galbladder.
I also had Ulcer. I had the Apoly - virus or something in the stomach. I had to take some med for that, and it heal. I aso have Gastristic. One of my GIs told me that after he did the endoscopi thing.
I also have Bile Reflux - I don't know how I get this one ...

I spoke to my other GI doc today. I went to her office today and she give me the report. She told me that I have a loose sphincter (malfunction valve). Need to make an appointment with the surgeon. She told me to go to USC - there - they are specialize in this type of stuff. I am going to make an appointment with my other GI from my insurance. I hope my insurance allows me to go USC for this. My primary doc told me to seek UCLA - there, they also specialize in this too, but my insurance doesn't cover UCLA. I am going to do some research.

Tracy, your description of the click sound when swallow and acid gurgled -your is so much like mine.
When I drink water, I notice the click sound from my throat.
I raised my head- bed. I sleep with 4/5 pillows. As I swallow siliva while I was laying down, I notice my throat make even more clicking sound, and I fell like acid or sour thing come up to my throat.
I have to sit up for a for a while & I have noticed that sour/bitter taste. I have also noticed my throat and esophagus -making some noise - like some water_pipe...

I woke up this morning took my PPI pill - still feel the burn throat & the soure mouth. I got aloe vera from waltmart - 99.8%. I drank aloe vera left and right. I drink it like water - 4 or 5 or so cup... this morning. I am desperate so I drink aloe vera straight from the container. I could feel the burn while I drank this juice - my RAW Throat.
It make me burp a lot. It has some gas. I also took a teaspoon of Manuka Honey - left the honey melt in my mouth & than swallow. I also went for a short walk. Now, I feel the burn is a little subside from my throat, but I am still having the soure taste in my mouth. I tried the Apple cider vinegar thing yesterday - it didn't seem to work for me. I am trying to find some relief.
A little relief seems good - from Aloe Vera. I am going to try this for now to get the relief. I hope it will stick. Anyone find anything with relief, please help.
- thank much everyone. Have a good nite everyone.
Please take care.
Marie.

Hi guys and Happy Easter,

    I was going to get up early and at least get registered at the County Hospital and may still go today because several doc's think I may be able to get testing done there and possibly surgery but no one knows for sure.  It's just the depression from the constant sourness that de-motivates me.  I can get up at 4am for work if i have to but have a hard time doing it for myself.  Anyhow. Marie I can just imagine you with that aloe vera juice.  I got a really kick out of that.  I know how you feel because i've so been there.  I just ran out yesterday but I use the gel ($25 a gallon) at a health food store near me.  I also heard and research many natural remedies which I thought have helped me in the past but now nothing is working.  I heard about Manuka honey I also take Probiotics and Digestive Enzymes.  Problem is in the past when something did the slightest good for me I wasn't quite sure what it was so it's kinda darned if you do and darned if you don't. I also heard taking cinnamon and honey together is very beneficial.  Cinnamon is definitely good for diabetics but I'm still researching the other benefits.    I take a tablespoon of raw, organic coconut oil 3 times a day but that's to help with having bowel movements on a daily basis.  I don't want to talk about that but I heard from many doctors and research over the years that not going on a daily basis ia detrimental to your health (of course with all the toxins) and that is one of my problems and may be an added source of my problems.  I've been taking over the counter Prilosec (with no help) only because of what one doctor had said about even if it doesn't feel like it's working, it is diluting the acid but I really do not like taking medicine period..but then again who does??   I also chew gum 24-7.  I've heard good and bad on that but I personally cannot live with the sourness so I HAVE to so I can get through the work day otherwise I'd be making "sour" faces all the time.    Barb, I'm so glad you got your reflux under control for now.   And I'm starting to see for the first time the relationship with the gallbladdar and reflux.  I've never heard of that and I've done years of research until the last week.  Another cna I work with had her gallbladdar taken out (she had the sourness etc) but had a few other symptoms that I don't so I took it with a grain of salt until now.  I will definitely look into that.  Thing is over the years I've had 1 or 2  good days for every 5 bad days and that's why I think I "ignored" it but now I have the sourness 24-7 for quite awhile and that's why I am trying to push myself to do something.  I guess I also don't want to hear like i've heard before.."ohh that causes cancer for sure you better do something".  But, it's not as easy as it sounds because I tried for 2 years straight trying to control it and searching out doctors until I blew it off.  Now..it's like I have no other choice.  Bill, sorry to hear about your sourness.  Hopefully it will just be temporary.  For me, the only time the sourness goes away is WHEN I eat and it only goes away for those few swallows only to come back with a vengence after I'm done.   Okay enough blabbering for today.  Thanks for listening - tracy    

Barb,
Glad to hear you had a good Easter. You have to watch that over doing it thing. They mess with some large arteries and such in there, so be careful.
I tried to eat some bread at our dinner...bad idea. I just can't resist fresh home made bread though. No matter how much butter I used it wouldn't go through.

Bill

Hi Barb,
Please do take care of yourself & try not to move too much since you have recent surgery. Barb, hope you feel better soon. I hoping you find relief soon. Thank you for helping Marie *Smile*. I am going to take some Carafate tonite. Barb, I get burn throat and  soar-throat. They come in different day. I am so confuse -GERD /Bile/ Etc  

Bill -
Thank for the usc info. Wow - your doc trained at USC - that is so cool.
Sorry to hear about the swallow thing & sour thing - hope it is only temp. Hope you feel better & able to eat that Home -butter bread -  -make me hungry *Laff* Bill - if you chew the small portion of food into liquid format, will it still get stuck?

Tracy-
Hope you able to see your doctor & he/she have a solution for you soon. Please do take care of yourself & see doctor ...

I have burn throat & soar-throat (at night) a few time a day - My PPI doesn't seem to control it. Sometime burn throat/plus sour taste last for ever - so miserable with burn. I been eating rice/veg/lean chicken/fish/banana/oat meal/some nuts sometime.  - No soda/ no junk food!
Howerver, I crave for hamburger and pizza and Elpo-logo chicken - but can't touch any of it. Just look and drooling all over. I used to weight 162lb. Then I came down to 117 because with all the sour/reflux/ect., drive me crazy. Lately, I ate the same thing above except I eat more of it - more often 4-5-6 meal a day except very small portion. I gain some weight today when I saw my doctor. I am about 126lb. I went to see my Primary doctor regarding to the constant sour taste today. I spoke to him about the gallbalder thing. He is going to order an Ultrasound thing. I ask him is there any other way to do a test on gallblader - he say that is the only way he know of.

Everyone - please take care -
Marie wishes everyone well -
Have a good nite.
Thank again :D

Marie the test Bob is talking about is the one that found my bad gall bladder. The 2 ultrasounds I had done showed nothing for me either since I had no stones. My surgeon was an older man and he said mine was the worse gallbladder he had ever seen.

Make sure you request that other test if the ultrasound doesn't show any thing. I didn't know there was any other test for the gall bladder either until I had mine done. Thank good ness my doctor knew about that one. Look it up on the computer and bring the information in to your doctor so he knows what to order. I seem to be doing better today after 2 days of rest.

Bill, I think they had to tilt the table for mine to go through too. You would think that by now they would have fine tuned this surgery so they don't get it so tight. That's really going to suck if they have to loosen your wrap up and have you go through all that again. If you do have to have it loosened I hope it works out ok. Barb

 

Hi guys,   I decided to call the surgeon Bill suggested (thanks Bill ) and he sounds wonderful but I am going to make an appointment AFTER I try something first.  I just want to try the natural route (which I've kinda been doing for years anyhow but not nearly as strict) before I get testing because I have the feeling with what's happening I will be having surgery much sooner than later.  Anyhow, I went to a natural chiropractor/nutrtionist who has been doing this for 25 years.  I have heard many negatives (sorry chiropractors that's just the word around here) about chiropractors so I am very apprehensive but I just want to see first.  Anyhow I am taking 2 things for my intestines (bloating etc)  plus probiotics (which I've been taking for a long time).  I am also eating just steamed vegetables and yogurt (his suggestion) for a couple of weeks.  Next, I  juiced some ginger and am taking a couple of tablespoons a day in water and also the aloe (my idea).  If at the end of a period of time nothing is helping then I am definitely going to go for testing.  I just really hate to do that but I really hate feeling this way also. 

Barb, you sound like you had a great Easter except for the over-doing it.  I don't have sisters and have one brother who lives kinda far but I know what you mean about enjoying the kids.  One of my best freind's just had a baby at 40 and she has another 4 year old (plus 2 that have familes of their own) so I get alot of kicks out of all the parties etc.    I would be very concerned because I love stuff like gummy bears, and chocolate and once in awhile I overdo it  and would hope I would be okay also.   I also haven't been exercising (have since I was 17 in some form like kick boxing, yoga, pilates, and walking plus weight) because I'm so bloated and tasting sour.  I'm  sure the Carafate will be of great help and thanks so much for the suggestion.  I only decided to try the natural route on Monday.  One of my clients swears by this natural chiro and she had the acid reflux and was helpled by him.  I kept asking her.."you had the sour taste???" and she says "yes, I thought I was going to die", so it sounds similiar.  But,,, if is IS my gallbladdar  ( I know I know hydrascan) than nothing will help besides surgery in my mind, but I am going to try and so far I've been following all the rules. 

Marie, what is Elpo Logo chicken??  Not that I want to make you drool again    I just started a love of cooking in the past few years and I love to cook.  I make a KILLER orange chicken, and am wondering about the Elpo recipie.  I bet it's got lots of cheese or something to be that good.:)  I make peanut/butter bannana pancakes for some of my clients and they love them.  I also make killer salads with 15 vegetables and add bacon or blue cheese if the client needs to gain weight.  There's tons more but I love when clients like to eat..I make relish trays with pickles, beets, cottage cheese, green onion, sweet and sour red cabbage.  Some of my clients are very lonely and I may be the only person they see in a month so I try to get them going with good music, good food, and lots of exercise.:)  That's why this is so terrible, I can't be the happy me and have shortened some of my hours because i can only fake being happy for so long before the depressions starts (no pun) ''BREAKING THROUGH".  Thanks for the well wishes.

Okay guys, take care and thanks for listening - Tracy

Hi Bill, Marie and Tracy, I didn't turn my computer on until tonight. I was rather wore out today after an am trip to grocery store and then a walk at 3pm. The rest of the time I sat in my chair and rested. I had another painful bathroom episode tonight. I hope he didn't cut my colon or something. It's been a week or so that I've had pain from that. It's bad enough that I am still putting up with the stabbing pain in my bladder when I get up and discover I have to go with out the other pain coming back again. I hope it all clears up soon.

I have found that a nexium 40mg in the am and then a pepcid 20mg am and pm seems to keep mine under control as long as I don't eat any chocolate or soda or any thing else we are not supposed to eat or drink. I seem to have it under control for right now. The nexium and the pepcid both work in different ways as my regular doc explained to me. Aciphex worked for me for a while before it quit working.

Marie I would definitly stay away from the fats. Before I knew what was wrong with me I had started feeling better and made the mistake of eating some deep fried fish and the pain and nausea was just awful. I was so glad when they found and took out that dang galbladder.

Bill how long ago did you have your Nissan surgery done. Mine will be 9 years this October.

Tracy, I know how hard it is for you to work and try to hide your pain. I was so bad before they took my gallbladder out that some of my fellow employees wanted to take my hours and work them and still give me the money they felt so bad for me. I worked in a group home full time at that time and it is hard to fake it when you are feeling so bad. I hope the things you try work for you but if not you need to do something more drastic like testing and surgery so you get can get some kind of quality of life back. Barb

Have you had this much trouble swallowing the whole time or had this been just recently? I think the worse mine has been with the swallowing was in January of this year when my throat was swollen from all the reflux. I can't imagine having to live with it that bad over a long period of time. I even had trouble swallowing my smallest pills. Barb

Hi guys,

  Hi,First off I found some info tonite that is brand new to me.  I hope I will be able to explain it.  If I can, tommorrow I will try to find the link.  Anyhow, you guys know the difference between gerd and lpr right??  Anyhow, there's another type called epr.  Lpr is esopheal contents rising to the larynx.  Gerd is stomach contents rising to the esophogus.  But....epr is GASTRIC CONTENTS RISING TO THE LARYNX.  You guys, I always thought i had lpr plus gerd, esophogitis, gastritis and the likes.  But.....get this..epr is unresponsive to drugs where lpr and gerd is not.  That may be why drugs have not helped me, although I did have a better 2nd endocsopy 3 years ago after taking Nexium even though it didn't help my symptoms.  Hope you guys could understand that.  I scheduled an appointment with the doc at Loyola in 2 weeks because I am having my doubts about natural methods.  But, I will just talk to the doc and see what he thinks.  I have a thing also where some days when I lean over to pick up laundry, etc. the front of my throat hurts.  Almost like when you have a severe headache and lean forward and your head hurts.  Worrisome, and wierd.  But I guess as of late, it's the story of my life. 

   Barb, I'm concerned about how you feel when you were in the bathroom.  That sounds like something that would happen to me and I would be trying to analyze what went wrong to explain the pain I was feeling.:(  I assume you never had that pain the first surgery?  I wish you could explain the pain better.  I have trouble going period and that's a whole other deal.  I will pray you feel better...not that I pray alot but I certainly should.  I have a nurse freind who goes to prayer meetings (i'm not starting a religious discussion just making a statement) who got healed after consisitently going to meetings.  I'm very happy for her and almost envious but she has mucho faith and she deserves it.  Also Barb, it sounds like you had some great co-workers - how cute of them to all want to help you.  It goes to show you how much they appreciated you.:)

   Marie, yeah we're just walking now right??  Maybe we're getting too old??:)  No..... perhaps the day will come when we will become extreme fighters and we will never just "walk" again.:):)  But, yes Marie, I have burning throat and tongue when it's bad all day.  When it's good only at night.  I also have an "uncomfortableness" when I swallow.  I can swallow but i have to be chewing gum because when I have a dry mouth I have to make an effort to swallow.  All those symptoms are from acid for sure.  I'm going to pray for all of us tonite.  I am scared but it is what it is. 

   Okay guys, take care and thanks for listening - Tracy 

Barb,
I had trouble right after surgery. They had me wait 3 months and then they did dilate it. They had to do it once more at 4 months. After the last one I didn't have any problems until the 1 1/2 year mark when I came down with a stomach virus and forgot about my anti nausea meds. Dry heaved for most of the day and ever since then I have had a swallowing problem. It wasn't quite so bad at first, but gradually got worse over the next few months. I've bee dealing with it for about a year and 4 months now. The second round of dry heaves last December didn't help much either. Someday I will learn to remember where I put the anti nausea meds. Slow learner I guess.

Marie,
The nasty taste did stop after a couple days. I took some prevacid for 3 days and it seems to have quit. I think it was from eating some chocolate and drinking a coke. I know better, but sometimes I just can't help it.

Bill