Reactions to ppis

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betterdaysahead5432
New Member


Date Joined Sep 2013
Total Posts : 18
   Posted 10/4/2013 8:38 PM (GMT -6)   
I am a new member and was hoping to get some suggestions. I have been sick with adbomen and esophageal swelling and pain. Extreme weight loss 155 lbs now 112 lbs in 6 months. Ashma acting up. Can not eat much because it hurts after I eat. All tests and bloodwork come out fine. I get a reaction to all ppis. Severe stomach pain. Am trying to get off prilosec 20 mg but I keep getting acid rebound. I take prilosec when i cant stand the pain anymore and it stops the acid but gives me severe stomach pain. ANy suggestions on others options like zantac or pepsid. My stomach is so sensitive.
Thank you in advance for any suggestion. I cant do ppis. cry

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/5/2013 12:47 AM (GMT -6)   
Since you can't handle ppis why hasn't your doctor recommended surgery for you?

It really is worth the recovery to feel better.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 10/5/2013 2:50 AM (GMT -6)   
Have you tried a few different PPIs - some of them have food colourings in e.g. pantoprazole is blue which am sure is pretty bad for anyone with allergies.

Be careful of long acting reliever inhaler - they can cause reflux - discuss with your docs whether your inhalers could be affecting your stomach.

Have you tried taking the PPI at different times of the day and WITH food rather than on empty stomach, just as an experiment?

You can take quite high doses of Zantac so it's worth asking the docs about that.

Also worth thinking about whether you could have gastritis, in which case Gaviscon may help. What tests have you had?

MMM
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

betterdaysahead5432
New Member


Date Joined Sep 2013
Total Posts : 18
   Posted 10/5/2013 7:01 AM (GMT -6)   
Thanks for your response. In May 6 months ago I staring having severe upper abdomen and chest pain and swelling. Then i started losing weight and couldnt tolerate most foods. After 3 er visits and 4 months later I realized it was fron 40 mg of nexium that i had been on for 3 years and i believe low stomach acid. So i went off nexium and had acid rebound. Ive tried protonix, prevacid and prlosec and had severe stomach pain and bloating from all of them. Now i have severe acid reflux for 2 months because of the rebound. i dont know what to take to help. Ive had alot of blood test. abdomen mri with contrast and a ct scan. pelvic ultrasound. 2 endoscopes. one in may that was normal and one a week ago that had few white plaques and bile reflux. im waiting for results. should hear in about a week or two. also had a colonoscopy that found five polyps. ive tries dgl, probiotics and digestive enzymes. im thinking about taking 150 zantac 4 times a day. i really think i had low acid reflux originally from the nexium because i had some of the symptoms. hair loss, dry skin, ect. im out of work and in pain most of the day and sleeping only about 5 hours a night in a recliner.
any help is greatly appreciated. thanks again.

i keep saying to myself "life is worth living" but the past 6 months have been the worse time of my life!

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 10/5/2013 9:29 AM (GMT -6)   
See if you could get pH monitoring and manometry done. I hated the test but now I know I am not trying to treat reflux it has changed my management strategy and my anxiety levels regarding damaging my oesophagus!

If you have reflux but can't tolerate PPIs then you could look into surgery, depending on manometry results etc.

I'm also trying Iberogast alongside Zantac - no rebound yet but 10 day mark is usually my brick wall and I'm on day 7 !

MMM
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 10/5/2013 9:48 AM (GMT -6)   
 
I find your information very concerning as that is a huge weight loss.  I would strongly encourage you to seek out further opinions re what is going on with you.
 
Changing up meds on your own trying to guess what might work when you are obviously ill seems like time wasted in getting to the matter of what is really going on.
 
Did you experience any unusual stress before all of this started ?  Stress can cause so many physical symptoms.
 
I encourage you to be your own best advocate and seek out medical help.
 
Kindly,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

betterdaysahead5432
New Member


Date Joined Sep 2013
Total Posts : 18
   Posted 10/5/2013 10:13 AM (GMT -6)   
Mudmagnetmum
Thank you for your suggestions. My gi doctor said 1step at a time. He will continue to do tests until we find an answer which was reassuring. i decided to take 150 zantac 4 times a day with gaviscon as needed. i cannot go back on the ppis. i have such bad reactions to them. i just need to weather thru the rebound.
what is iberogast?
thanks for your response.

Kitt
I so agree with you. I think what has made my stomach worse during the six months is because i have been put on antibiotics about 6 times for a uti and that has continually ripped up my stomach. And yes i though it could be stress so i have been seeing a phsyocologist for about 2 months and will be seeing a physiciatrist in 2 weeks. im also on .5 mg of lorezapam 2 xs a day. I know my goal is to eat as much as i can but the rebound acid is making it difficult. ive had alot of tests to rule out tumors. im getting a biopsy from my obgyn on monday just to be on the safe side.
thank you so much for your concern.
Gerd
Anxiety
Ashma
"Life is worth living"
Carol

betterdaysahead5432
New Member


Date Joined Sep 2013
Total Posts : 18
   Posted 10/5/2013 10:30 AM (GMT -6)   
mmm

Congratulations on day 7 of getting off ppis im assuming. please let know how you are making out. what worked and what did not. also what foods are you eating. im staying away from gluten, milk and soy. fruits, vegetables, chicken and rice products.

Good Luck!!!!
Gerd
Anxiety
Ashma
"Life is worth living"
Carol

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 10/5/2013 11:04 AM (GMT -6)   
Carol,
 
Antibiotics can truly cause severe gastritis for many and add stress to your problems and the causes of your symptoms becomes like alphabet soup.
 
I am glad you are continuing to work with your Drs. and therapy is a grand idea.  I have a Psychiatrist who is simply awesome and after going to many therapist  I know that at this time in my life I need help in dealing with my problems.
 
My Psychiatrist has offered to do one on one therapy with me instead of suggesting that I start over with a new therapist.  This is nearly unheard of for her to do therapy as she deals with all the medications etc. Knowing she is there for me is a huge comfort.
 
I hope you find therapy helpful. At the top of our page, the second thread has much info for our members.  The 5th post down titled - Health Anxiety - was added by Denise and you may find the information in this thread helpful.
 
Sending you many good wishes and keep on talking with us,
 
Kindly,
Kitt
 
 
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."

betterdaysahead5432
New Member


Date Joined Sep 2013
Total Posts : 18
   Posted 10/5/2013 11:16 AM (GMT -6)   
Thanks Kitt for your response. I really like my therapist. She so validates my stress. I also have a 13 yo who is special needs and requires alot of attention. He has cerebral palsy, severe acid reflus, celiac disease with milk intolerance, developmental delays, seizures and non verbal. I have always been able to analyze his issues and he is doing fantastic. Thats why im upset i cant figure out my issues.

i will definetly check out the health anxiety post.

glad the therapist worked for you.

thanks again!
Gerd
Anxiety
Ashma
"Life is worth living"
Carol

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 10/5/2013 11:26 AM (GMT -6)   
Hi again,

Yes, my troubles started after recurrent treatment for cystitis!

Iberogast is a herbal tincture - it was mentioned in the BMJ recently for functional heartburn. I've tried a few natural remedies and find milk thistle and acupuncture help me, but it's a long drawn out experiment and you have to make sure you're safe to 'play' first. You could do with finding a medication combo that works so that you always have that to fall back on.

Have you tried low dose PPI mixed with Zantac?

Yes, I've stopped my PPI because of ongoing side effects, but also because of normal test results and a possible diagnosis of functional heartburn - got a different cons to see in a couple of months.

MMM
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 10/5/2013 11:27 AM (GMT -6)   
Kitt, how lovely to see you here and I love the alphabet soup analogy !!

MMM x
GERD (3 years and counting)
Lifelong stuff: Food allergies/intolerance, eczema, asthma

betterdaysahead5432
New Member


Date Joined Sep 2013
Total Posts : 18
   Posted 10/5/2013 11:43 AM (GMT -6)   
hi mmm,

im so happy you got a diagnosis. how relieved you must be. now you can work on a plan. good luck!

i would like to go back on nexium but it gave me so many side effects but got rid of the acid. all other ppis give me svere stomach pains. i tried low doses of prevacid and prilosec. although when the acid is too much to bear i will take 20 mg of prilosec. i had to take one yesterday. severe stomach pain but no acid for about 12 hours yesterday.

i will look into the things you suggested

Thank you so much for your replies. best wishes!
Gerd
Anxiety
Ashma
"Life is worth living"
Carol
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