Any hope for me?

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Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 7/26/2014 2:31 PM (GMT -6)   
Hi out there. I am hoping that someone will be able to tell me they lived through getting off PPI's successfully . I have been on Nexium, dexilant and protonix this year. This was to treat GERD. Initially they would work but I had serious side effects, no appetite, extremely dry mouth and weight loss. I had every test of the GI possible. My GI insists that PPI's do not cause these side effects and she has no idea why I am feeling so sick. I have turned to web sites like this one to help me feel I am no crazy and there is hope out there. A week ago I stopped all PPI's. I read that I should wean from them but I felt I was being poisoned every time I took a pill. I still have no appetite and nausea. I am taking good probiotics and trying to use apple cider vinegar . I have been nauseous since I went off the pills. Has anyone lived through this successfully? Thank u for any hopeful words. MGM
MGM

James_a
Regular Member


Date Joined Jan 2014
Total Posts : 97
   Posted 7/27/2014 12:56 AM (GMT -6)   
Hi there

I have started to realise GI doctors/consultants are rather useless and particularly so in my case. I am starting to think they their wages are payed for by PPI company.

I do believe they are making you sick, because they made me sick beyond words can describe.
I was treated for asthma attack/infection one year ago with what totalled to one month antibiotics and almost 4 months prednisolone steroids and i was getting worse and worse, doctors did not recognise i was having silent acid reflux until December but the damage to my stomach was done and Christmas/januarry i had such sever gastritis that i was coughing up acid, i was drowning in acid.
was put on ppi, and one week after i started to get stinging pins and needles type pain over the burning pain where i had gastritis. I told doctors they ignored me, i kept saying these tablets are playing havoc with my nerves, they said no, so i accepted it. Over 3 months i for cramping, lost 20+killos weight, gallbladder pain, headaches, all kind of wired pains such that i could not eat anything, nothing but rice and boiled chicken, anything else i would get strange pains. My stomach felt strange, not very well. did endoscopy and everything was well no gastritis it was healed. Nut still could not eat.

I tried to come off PPI now, so tried to drop nightie dose of pantoprazole. By 5am i was in hell, had sever burning pain in the stomach and was even more worse than when i started, much worse. Then pain was intolerable, the acid was drowning me. I was truly slaved to this drug. Went to doctors told them that my gastritis has flared up. They said no, its impossible. I kept insisting and they looked at me strange and insisted I had visceral hypersensitivity. Took drugs for that that did nothing, anyhow i Came off pantoprazole hell and went into omeprazole, but that was not working for me so they kept upping then dose because i refused to go back on pantoprazole, when on omeprazole most of my strange stomach pains died down so that confirmed it was pantoprazole causing me stomach pains. But now i felt like i could not breath, my breathing at 60mg omeprazole was like i had a stone hanging off my diaphragm, went into AE and they were more dumb than a rock.

With pantoprazole, i had to spend 3 months only laying down on my side, apart from what manufacturers just like to generalise as stomach pains, it did something to my stomach nerves such that I could not sit or stand but only way i could find comfort was to lay sown only on my left side. It was hell, it what happened after my flare up was even more worse.

I at this point went back to pantoprazole being scared to try any other ppi. I toughed out 3 more months of hell like breathing issues, pains and aches. My gastritis was so bad that even going back to pantoprazole I was getting acid mist into my lungs and it was causing me this type of breathing issues. Fast forward 3 more month of not being able to stand because every time i did it would feel like my stomach was touching my ribcage and making me cough acid and burn. Anyhow told doctors and they just looked at me crazy. I had 2 consultant interviews and they made me wait 2 hours each in the waiting rooms and i was constantly refluxing and getting horrid metallic taste in my mouth, considering anything more than 10min standing or sitting was uncomfortable. I though nothing of it until I woke up next day and i could not stand, if i tried i would cough acid, sever stomach pain and i would get burning pain shooting into my legs specially left side and into my heart, back and even got pins and needles. Even paying down on my left side was no help, it was 3 weeks of this hell before i could begin to tolerate standing up for 2-5 min before pain was intolerable.

I was on nexium by now, but that made no difference whatever damage I had done to my nerves in pantoprazole was here to stay, so i pushed for endoscopy and kept telling doctors your med caused me severe rebound acid making my gastritis flare up and damaged my nerves indirectly/directly somehow. They laughed at me basically, so pushed for endoscopy and it came us as chronic gastritis and so went out the window their nonsense about visceral hypersensitivity. I was at this point getting sever gallbladder pain on nexium and weird stomach feelings, so I decided enough is enough if i am to die, then better to die off than on these evil meds( i must stress they are evil for me but god send for those who can tolerate them)

I dropped nexium almost instantaneously, dropped to 1x 20mg from 2x a day for 3 day and then dropped it complete. I wish i could of had a slower tapering dose but my gallbladder was killing me. The second night after dropping nexium I got horrid rebound acid and also flared my gastric back up. But my stomach just felt like it relaxed and i felt so much better in my mind. I could sit and stand almost immediately the next day, it was amazing, I still had then pain standing and sitting but reduced by 90%. My gallbladder pain reduced by 80% but its still playing up and i am hoping it will get better, because then doctors would most likely just want to remove it.

Very sorry for such long post but i just wanted to show you that your body tells you if something is bad and i listened to STUPID doctors instead of my body, doctors who needless gave me steroids on gastritis and never even told me prednisolone blocks prostaglandin production thus causing gastritis. I had problems with hell for 8 months and every day was hell, they ignored me and those that did not just shrugged their shoulders in confusion, I dropped the tablet and NEXT DAY most of the nasty symptoms just reduced into thin air. I can't tolerate ppi and basically what i went through the manufacturer summarises as stomach pain lol

If the PPI are giving you problems, they are not in your head. I had stomach pains, stomach pins needles, stomach aches, cramping, breathing problems like stone was hanging off my diaphragm , heavy stomach feeling like my stomach was being pulled on or expanded very strange it was like it was dried out almost. I had nerve issues or my stomach had expanded and pushing on a nerve or something only god knows what was going on. I had gallbladder problem from ppi and Zantac. I had constant anxiety and some panic attacks, but i can't attribute this to the PPI meds with confidence but rather say PPI caused them indirectly.

I have now been off PPI almost 2 weeks and although my gastritis is hell, I am feeling so much better still have some gallbladder pain but I am hoping as I recover slowly it will go. I am dealing with gastritis naturally mostly but I am taking sucralfate which is helping a little. Also taking gaviscon antacids but not much now, I am cutting everything back and using nothing excessively. I thought also i might be causing my gallbladder to play up, hence reducing gaviscon.

anyhow, sorry for then long post but discuss it with your doctor about trying alternative PPI and if you can't find one that has tolerable side effects then you can try H2 blockers and if they don't work for you then its a a choice between how manageable your symptoms & risks are on or off PPI/H2 drugs. discuss it with your doctor and don't let them push you around.

all then best and hope you find a solution soon.

Post Edited (James_a) : 7/27/2014 1:26:07 AM (GMT-6)


Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 7/27/2014 6:35 AM (GMT -6)   
Thanks for ur reply. I have been feeling so alone in this hell. Do u have a job? I am a teacher so I have the summer off but I am concerned about having to go back to work. This condition is so debilitating . MGM
MGM

James_a
Regular Member


Date Joined Jan 2014
Total Posts : 97
   Posted 7/27/2014 10:02 AM (GMT -6)   
Hi

I was working and also do academic research but unfortunately both have been on hold really, when you have been ill like I was and being tortured both mentally and physically by this cruel disease its hard to work really. Both my research institution and wok have been understanding and have given me the flexibility needed. But disease has made me practically disabled for 8 months and i am only now getting my mobility back and it feels so food. Just hope that i my gallbladder plays fair and i don't have to take it out, i don't need anymore stress on top what i have. I understand how hard this disease is and can sympathise with you, unless you walk this path you will never know of its horrors and my family luckily have been supportive mostly.

You will be fine, change your diet into GERD type and be brave experiment.

good luck with everything and i hope you recover soon.

Post Edited (James_a) : 7/27/2014 9:07:09 AM (GMT-6)


Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 7/27/2014 10:13 AM (GMT -6)   
I can't believe the number of people with problems with PPI's and so many doctors who deny this is happening. If I live through this I'm going to become a patient advocate.
MGM

Pat Tall
Veteran Member


Date Joined Aug 2012
Total Posts : 950
   Posted 7/27/2014 11:52 AM (GMT -6)   
Getting off PPI is an awful experience. Doctors are finally learning about the rebound effect. Several years ago we told our doc about rebound. He said no such thing. I told him the medical journals and web pages all have info about it.

The next time we saw him and repeated our problems, he said you know you are experiencing rebound-- teaching us about it. Huh!

We were on Prevacid. What we did to get off was open the capsules and split the little pellets into empty capsules we purchased from health food store. Takes a steady hand-- went from halves to thirds to quarters to eighths. Took approximately six months to get off. You must titrate down very slowly. Very slowly. I had family member help with the splitting.

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 7/27/2014 12:22 PM (GMT -6)   
Thank you ... I feel a little more hopeful hearing stories of others who have gone through this. I pray I can get through this. MGM
MGM

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 7/27/2014 12:26 PM (GMT -6)   
Has anyone gone through stopping suddenly with PPI's and had other tales to tell? I had to go off suddenly as the side effects were just too awful to stay on them. It's been a week and I still have no appetite and am nauseous, it's terrible.MGM
MGM

Mommanoesbest3391
Regular Member


Date Joined Jun 2014
Total Posts : 64
   Posted 7/27/2014 4:24 PM (GMT -6)   
I will second everything said here, been off PPIs for 3 days I'm not sure what I experienced after that was rebound but I am better off than depression symptoms I felt while on them. This is my second time with PPIs in three years, both times and still recovering I lost 30 pounds or more, loss of appetite, what little I ate I felt nausea. I tried just about everything , went just about anywhere for help and lost a lot of precious time. I was bedridden and felt hopeless but I knew that this wasn't in my head. I was working an 8-4 job, I have two teens and I'm married, I've been on sick leave since start of June, just when the I had started PPIs. Important thing here is PPIs do work...for the right person and diagnosis. As James stated, getting the proper tests done, specially acid measurements are vital. Too much acid or not enough is said to cause same symptoms, and I am waiting for this test also to determine if I don't make enough since PPIs make me worse. I hope this helped you some, demand of you must to get at the bottom of this. Be well and hope you feel better soon.
-Take care of your mind and body so that your soul will be tempted to stay-

GERD with laryngoesophagitis
Intercostal Neuralgia 2012
General Anxiety Disorder
Lactose Intolerant


Losec 20mg twice a day (July 2014) and tapering off
Ativan 1mg since 2011 for body/ GERD spasm and sleep as needed.

iNzzane
Regular Member


Date Joined Mar 2011
Total Posts : 25
   Posted 7/27/2014 4:28 PM (GMT -6)   
Hopeoutthere? said...
Has anyone gone through stopping suddenly with PPI's and had other tales to tell? I had to go off suddenly as the side effects were just too awful to stay on them. It's been a week and I still have no appetite and am nauseous, it's terrible.MGM


Was on 40mg Nexium, once a day, no appetite, nauseous.. Took a endoscopy showing irritated tissue, 24ph test confirming the 'GERD' diagnosis. (Can not remember the numbers).

I quit them after 2 years, got some of the old "heartburn" back, but nothing extreme, so decided to stay off. (I may have been lucky, but my heartburn has been more of the "silent-type", no excruciating pain..) My colon started to acting strange a few months before i quit, and I still blame Nexium, it's now been a year since I last touched Nexium, and my colon is finally starting to function properly again, the heartburn is back, chest tightness and breathing problems but I'm going for a diet this time, no more PPI's, I may pop a Zantac from time, to time.. but I'm not going to use it over longer periods.

Best of luck to you!

Post Edited (iNzzane) : 7/27/2014 3:31:06 PM (GMT-6)


Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 7/27/2014 4:39 PM (GMT -6)   
Thank u for your story. I just feel like this has taken over my life. I am nauseous so don't eat so I have no energy and lie in bed or on the couch . I was vital before this started. I so much want to be there again.
MGM

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 7/27/2014 4:58 PM (GMT -6)   
Thank u so much to all and Mommaknowsbest, thank u for telling me about your nausea and lack of appetite. It's just terrible and I really pray I will live through this and feel better. My Dr. Is signing me up for the Ph test next week. Maybe that will shed some light. I was getting so depressed it is wonderful to have people with similar issues rooting for you . I hope u feel better soon
MGM

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 7/27/2014 5:14 PM (GMT -6)   
Has anyone tried slippery elm? I will call and ask my naturopathic dr but I was wondering if it had helped anyone?
MGM

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 7/28/2014 2:46 PM (GMT -6)   
Hopeoutthere?

I just wanted to suggest a couple things for you. Please be careful with ACV. If you have any unhealed areas in your esophagus it can cause some issues. I do love ACV on my greens and fish!

I used regular Pepecid instead of a PPI after my esophagus tear and last nissen redo when I had some reflux type issues. Myself I didn't have any side effects from it and used the store brand that was way cheaper.

It might help you get through the rebound from PPIs. I didn't have any problems stopping it either. Just a thought.

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

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

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 7/28/2014 3:43 PM (GMT -6)   
Thank you for your suggestions. I appreciate it.
MGM

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 7/29/2014 4:53 PM (GMT -6)   
I just had the gastric measuring test today. Eating radioactive eggs and then waiting while scans are taken every hour . It was hard to get those eggs down I must say. Results aren't on yet . I still feel nauseated, dry mouth, no appetite. Tell me again, can I recover? Please send me a positive story. Thanks. MGM
MGM

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 7/29/2014 9:41 PM (GMT -6)   
Here's a thread about successful wraps.

www.healingwell.com/community/default.aspx?f=45&m=3132073


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

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

Hopeoutthere?
Regular Member


Date Joined Jul 2014
Total Posts : 57
   Posted 7/30/2014 7:33 AM (GMT -6)   
Thank you for the thread of stories.
MGM
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