Good News/Hard Decisions

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LauraV
Regular Member


Date Joined Nov 2005
Total Posts : 84
   Posted 12/27/2005 12:01 PM (GMT -7)   
Test results came back and indicate that I do NOT have Zollinger Ellison Syndrome.  If you are familiar with that disease, you know why I'm happy.  Patients w/Z.E. have extremely high gastrin levels caused by tumors growing in the pancreas and other organs.  After several excruciating trips to the ER, it has pretty much been determined that, yes, I'm only (!) suffering from severe GERD + HH + motility probs.
 
I am so SICK of all of the craziness, pain, and lifestyle retrictions.  Would I be making a mistake by having the surgery ASAP?  I know surgery is not a cure-all, but five months of this is more than enough for me.  There have been moments when I was writhing on the bed in pain, hoping to die.  Maybe surgery could afford a chance for a more normal life . . . one that does not revolve around my stomach and the acid it produces.
 
Laura 

flybullseye
Regular Member


Date Joined Aug 2005
Total Posts : 139
   Posted 12/27/2005 6:21 PM (GMT -7)   
I know I feel your pain.....Are you on anything for your GERD?? I have a HH, too and I know how bad it sucks!! But, I have heard alot of bad things about the surgery, so I am not going to do it until I have exhausted all of my resources!! I'm on Nexium 40mg right now and it is finally kicking in after, what...7 weeks?! My doctor said it could take MONTHS to heal the GERD. I have been sick since August and didn't go on the Nexium until November. So, I have a long way to go!!

Hang in there!! You're definitely not alone! There have been many days in the past 4 months where I was lying in bed from the pain wishing I would die, too!! It's HELL!!!

If you opt for the surgery please let us know how it goes!!

Michelle :)

flybullseye
Regular Member


Date Joined Aug 2005
Total Posts : 139
   Posted 12/27/2005 6:22 PM (GMT -7)   
I also have IBS-D, too!! So, I'm having some sort of attack every single day, here lately because the GERD upsets my IBS!!! :(

Michelle :)

LauraV
Regular Member


Date Joined Nov 2005
Total Posts : 84
   Posted 12/29/2005 4:03 PM (GMT -7)   

Michelle, I've read your prior posts stating that you had bad side effects from other PPI's before starting Nexium.  May I ask what those effects were?  I am currently on week 7 or so of Nexium and I swear the stuff is making me sicker than I was previously.

Laura


babygirl6152
New Member


Date Joined Dec 2005
Total Posts : 12
   Posted 12/30/2005 8:02 PM (GMT -7)   

 I am so sorry to hear of all you suffering from GERD and hiatal hernia- mine was quite large- I had the Nissen fundo last December but it was a partial wrap and done laparasopically- I had to eat soft foods maybe 3 days then started regular diet- My husband took me to Olive Garden and Red Lobster the first week post surgery. The partial wrap is the thing to ask for as it is not so tight- my surgeon left me lots of belching room etc. I am not quite sure so far that I cannot vomit if I really needed to  like from stomach flu or something. I would urp my entire stomach contents every evening. The hiatal hernia makes food stay up in your chest and never go down - anyways you probably know all this- just my 2 cents.

 

What are your particular worries and fears of the operation?

  btw keep me on your prayer list I started belching again like crazy since October and am having GB surgery Tuesday AM- My EF was 20 and I have stones. Had gastric emptying test today- will let you know the results when I get them......

 

mary baby


LauraV
Regular Member


Date Joined Nov 2005
Total Posts : 84
   Posted 12/30/2005 10:15 PM (GMT -7)   

Mary, thanks so much for your reply.  I loved hearing that you were able to visit Olive Garden and R.L. so soon after your fundo!  I'm so sorry about the GB situation and send you all my good wishes.

Mainly, I just want to get my quality of life back.  I'm no spring chicken but I am only 33 and want to be able to go out with friends occasionally for drinks, or have a cup of coffee in the morning.  From your own experiences, do you think such normal activities might be possible for me post op?  I recognize some people can function quite well on the PPI's alone, but as for me . . . I simply can't function effectively all day with my stomach contents coming up into my mouth.  It's gross.  It tastes bad.  It's distracting.  Not being able to vomit, well, I can live with that if I have to, although I do plan to have kids sometime soon and I can't imagine the horrors of morning sickness w/o the ability to purge.

I'd appreciate your feedback.  Safe journey through your operation on Tuesday and beyond.

Laura


babygirl6152
New Member


Date Joined Dec 2005
Total Posts : 12
   Posted 12/31/2005 9:32 PM (GMT -7)   

I can understand about the morning sickness business and wondering if you'll need to urp-  

 

if you have a weak stomach don't even read this next part....... you've been forewarned eyes

My sweet husband theI n fiance and I were out looking for wedding rings actually bought them that day as I Will never forget the day - it was exciting , romantic- something I would never forget andyways and being in a mall we were unfamiliar with  (in his parent's hometown San Antiono) we went up to ask the direction/ mapFAQ dude for a directory so we could find the Jewelers- I went to burp- had just eaten supper- and it all came out on the floor- the look of horror on my fiance's face- you should have seen it- but immediately mixed with love and we started looking around for tissues - whatever to clean it up. what a bad memory mixed with a wonderful night- I guess before we ever even married he decided on for better or for worse, huh? Dadgum what a man- another time I actually burped and urped right when he came up to kiss me- what I am trying to do is not gross you out but this- there will be a point when you are ready and there will be no turning back- when I saw my GIDoc and we decided on teh surgery after all thetests showed I was a good candidate I asked for the surgery the next day so he actually called the surgeon right there on his cell phone from his office in front of me you know? and we got it all worked out for the next week.....

 

as for your drinks- LOL  :-)   I refused to alter my diet in any way presurgery except for no alcohol and no caffeine drinks but that was easy for me- I am back to two Margarita's a week and am having a little heartburn but I reckon I am asking for it with my indulgance- so every one being different- it's just hard to know what one or the other gal can tolerate post surgery- remember to ask for partial wrap though or you may not get food down again easily maybe for months - I know one gentleman had a drink last New Year's and he said his heartburn was back full swing and he regretted that one drink for weeks. I just know I loved to eat and still do and was so glad to fianlly have my food stay down all night and not have to empty my chest/ stomach contents before I could sleep - every night I tried to sleep and every night I had to get up and up chuck it before I could breathe again- is yoiurs that bad? DO you burp a lot? Is that when it comes up? do certain foods aggravate it? Did you say you have a hiatal hernia? I don't think PPI's can deal with that- it is mechanical and has to be fixed with surgery- Have you taken Zelnorm yet for motility? it is improving mine a little

 

write when you can and HAPPY NEW YEAR!!!


Coralee
New Member


Date Joined Jan 2006
Total Posts : 11
   Posted 1/1/2006 8:36 AM (GMT -7)   
Hi there, well I've been suffering for about 5 years now my heartburn symptoms have gone away but i think I have LPR symptoms, sore throat, tightness in throat, heavy feeling on my chest and shortness of breath. Will it ever go away. I have tried various drugs with not much helping. I'm on week 3 of the nexium 40mgs. Does anyone know if I would be a good candidate for surgery. The only tests I've had done are endo and barium swallow. I'm not scheduled to see my ent until next November but i'm fed up, angry and can't take anymore i'm only 35 and i know the feeling of wanting to have children and feeling like this i don't have a good quality of life. To add to that my dad just got diagnosed with lymphoma two days ago and I have to get better for him. I'm so preoccupied with myself and my health problems and I hate it. I need to be here for my mom and dad. Any help or information anyone has would be greatly appreciated.

Also on another forum someone mentioned they had heard of a patch a new way of administering medication for GERD and LPR. You put it on at night. Has anyone ever heard of anything like this?????

Thanks again, bye for now.

Coralee

babygirl6152
New Member


Date Joined Dec 2005
Total Posts : 12
   Posted 1/1/2006 12:10 PM (GMT -7)   
what were the results of your endo and barium swallow coralee?
 
 
mary

Coralee
New Member


Date Joined Jan 2006
Total Posts : 11
   Posted 1/2/2006 6:17 AM (GMT -7)   
The only thing they have told me is that I have GERD.  I don't have any heartburn symptoms anymore or regurgitation is just the pressure on my chest, shortness of breath, tightness in throat and sore throat.  I'm also having pain under my arms and breast tenderness could this be from the Gerd????
babygirl6152 said...
what were the results of your endo and barium swallow coralee?
 
 
mary


babygirl6152
New Member


Date Joined Dec 2005
Total Posts : 12
   Posted 1/2/2006 10:50 AM (GMT -7)   
I am not sure our symptoms are related but I heard of LPR before my surgery an I hadn't had sore throats in years! Then post surgery I end up with this thing in my throat and sore throat hurt even when I moved my head- and I remembered LPR so went back on ppi's- Prevacid and Naprosyn- not so sure Naprosyn is great for GERD sufferers- falls in the NSAID"S category but I needed some reief I though of inflammation- I am famous for doctoring myself- but I do know my body better than anyone- right? I don't know what to say- are the sore throat symptoms more important to you to relieve or the heartburn? I know you wish it were all fixed- right?

as far as your endoscope results showing Gerd it must have been thru the biopsy- Biopsies show reflux- and actually I want a barium swallow test soon if all my symptoms are not relieved by GB removal.....
I just requested all my results be sent to me- you can ask for your own copies- all they ask is- "Shall I mail them or are you going to come by and get them?"

You have any GB symptoms? referred pain there to breasts, back and shoulder- having a HIDA scan and ultrasound are a piece of cake- My husband is sure that the GB removal should have been done before my GERD surgery- but this is just hind sight/// My Hida scan results- ejection fraction was 20%- not too great- under 35% is closer to nonfunctioning GB so I am candidate and that is tomorrow at 7:00- My tenderness or discomfort is over the breast, under both breast and shoulder pain- but mine seems to be associated with gas- belching.... I will let you know if my symptoms are relieved- The only times I am short of breath is when I can't stop belcching- I have episodes which they say may or may not be relieved with GB surgery but GI doc says 60-70% chance and I am desperate to try anything-

May I ask if your weight is normal? When I gained weight during pregnancy I got hiatal hernia- that caused lots of my stomach contents to stay in my chest
when they did my stomach wrap they pulled down the sliding HH and "it is no more" and no more vomiting

have you considered ph Bravo test- it will show if you are still refluxing and it along with a motility test can help decide if you are candidate for surgery for the LPR/ GERD like I had- I would do it again in a minute- it is such an easy recovery time and it was lap. procedure- nothing to it! I did ask for a parital wrap and they decided I could have it- I can burp ate semi solid foods my first meal postsurgery, and returned to solid foods within a week- Wrap tightness lasted only a few weeks and mainly when I took my pills or ate too fast I would notice discomfort

take care and write when you can

mary baby
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