Getting off PPI - Acid Rebound - Need Help

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joogle
Regular Member


Date Joined Apr 2012
Total Posts : 60
   Posted 4/18/2012 7:24 PM (GMT -6)   
Hi - I found this board during my google searches and would appreciate any/all feedback.


History

August 1st, 2011, I fasted for 12 hours in the day, then when opening my fast, I hate plenty of food. At night, I drank two bottles of water and drank some coconut water, that is when I noticed that I was having a hard time breathing. I drank too much water and I could feel it, I had to get up and try to walk around, had hard time burping. After a few minutes in stretching I was able to burp and relive myself but i felt some discomfort in my stomach. I went to sleep and the next day noticed discomfort as well.

When eating I would feel discomfort and when not eating as well, I tried to burp but sometimes it was difficult, basically I ended up belching for some relief, but discomfort was constant now and it felt like somebody punched me, the pain was right below my chest plates.

I went to my Primary Care Physician (PCP) after one week, during that first week I took nothing. He gave me dexilant to take, I didn't know what it was, I took it for a few days but no relief.

I revisited the PCP after like 5 days, he sent for me test for gall bladder.

The gall bladder test came back great, no Issues there. He told me to go see a GI.

This is now end of August, saw GI, he said let's do a upper endoscopy to see if there is any Issue.

This is my exact endoscopy report:

"Irregular GE junction was noted in the distal esophagus. Multiple biopsies were obtained and sent to pathology. Gastritis was found in the antrum.
Biopsies of the antrum and body of the stomach were obtained and sent to pathology. The duodenal bulb was normal in appearance, as was the
postbulbar duodenum. Normal duodenal folds were noted. Retroflexed views of the cardia revealed no abnormalities. The scope was then
completely withdrawn from the patient and the procedure terminated.

ENDOSCOPIC IMPRESSION:
1) Irregular GE junction in the distal esophagus
2) Gastritis in the antrum
3) Normal duodenum

RECOMMENDATIONS:
1) await biopsy results
2) anti-reflux regimen
3) continue current meds
4) follow up office in 2 weeks"


Now, when I went to the GI, he gave me Nexium. I had the endoscopy done in two days right after my first visit.

My pain after the endoscopy grew, I even had a slight fever due to the pain, I revisited him thinking something in the endoscopy went wrong, he just told me my stomach is inflamed. He told me to take Nexium 2 X 40g every day for two weeks, and come back see him.

I took 80g for two days then cut it to regular 40g, the Nexium did help.

My biopsy results came in, everything was great with the results.

He told me to continue Nexium for 3 months and come back.

After one month of Nexium, I noticed my burping/belching was coming back, and I decided to stop cold turkey as my stomach pain was gone.

That was a bad move as now I even had sore throat symptoms which I never had. Note: I never had heartburn, just discomfort in the stomach right below my chest plates. about 10 days of not taking anything and trying OTC Zantac, I went to him again in October, he told me to take the Nexium again. We did play with omeaprazole, but Nexium worked better.

I tried Nexium, it helped initially but then stopped working. He told in November to take 80g per day for like 3-4 weeks. I took it for like 12 days and saw no improvement, so stopped and just reverted to one pill per day.

Late November, I revisited him and he switched me to Achiphex. I took 20g per day and it worked great for me.

I continued entire month of December on it and it helped.

In January, 2012, in my follow up, I spoke to him about getting off of it, he told me to switch it to every other day.

I then switched it to every other day and my symptoms did not come back. In the day I did not take Achiphex, I took DGL.

Then in late February, I decided to switch to taking achiphex one day, skip two days. I did notice symptoms like burping come back, but it was maintainable. I just took some more DGL those days.

As of Today

In mid March, 2012, I went to him again told him I'm doing good and would like to go to H2 blocker, he prescribed me 150mg Ranitidine for twice a day as needed.

Now when I stopped Achiphex I did see a backfire, I saw symptoms come back again, but it was not the pain underneath my chestplate, it's the heartburn, which I NEVER had. I think it is heart burn because I feel tightness and discomfort in my chest. Also, burping came back.

Note, I also increased other supplements. I started taking mastica gum which helps a bit, but DGL so far helps the most. I tried Aloe Vera juice, which I am not sure if it helps.

Now, it's exactly one month today when I stopped Achiphex, I think maybe one or two day I was completely symptom free, but every day I have had symptoms, no pain below my chest plate for which I went to in August, 2011, but instead this chest pain which I attribute is heartburn, probably as a rebound from stopping achiphex.

I need some advice, past two days I've had continuous pain in my chest, even at night , this is first time this has happened. I have pain burping in my chest.
Today was exactly one month when I had completely stopped taking Achiphex. I went to my GI today due to this pain past 2-3 days, I asked him about acid rebound, he said that is to be expected once you stop, but then he asked me if I have been taking Zatac (2 X 150) per day, I said yes, and he said if I had symptoms all of those days. I said I have had mild symptoms, all manageable, but nothing like the pain for the past two days ago.

He said then I was not taking Zantac as needed but as a need and it still did not resolve the symptoms.

He said to go back on Achiphex (20mg per day) and then I can repeat the test that I did. One month Achiphex one per day, then every other day, then switch to Zantac, and return back in 3 months.

He said I may have to stay on Achiphex every other day.


My concern is if I'm watching what I eat, where is this acid coming up the esophagus from, this is the first time it happened. I am planing on seeing another GI for his opinion, what do you guys think?

My questions, current regiment, and concerns

This is what I do right now:

1. Take 150mg Ranitidine in the morning before eating anything.
2. Take DGL capsule before breakfast, lunch, and dinner
3. Take Mastica Gum capsules between lunches and at night.
4. Sometimes take 150mg Ranitidine at night.
5. Past 3 days have started taking Gaviscon

My questions:

1. Do I have low or high acid? I did good on the PPI, but now that I am off it, I have belching again which is not always the case, I guess there maybe triggers. I don't have the stomach type of pain I had before, but now have chest pain, which I assume is heartburn.

I don't want an invasive test, I heard about the Heidelberg test but I am not sure who to go to, the GI again?

2. What else can I do to get rid of this heartburn which I never had in the beginning? I listed my regiment above with herbal meds.

3. Should I visit another GI?

Lastly, I am in Orlando, Florida, so if anyone has any good herbalist or doctors, I would appreciate your feedback. I found one Naturopath who is a MD, his name is Dr. Kalias, but he's not accepted by my insurance, plus he does no insurance claims, he charges a lot, so right now he's not an option.

Looking to make sure I off meds I don't need but am recovering back to what it was like before as well without doing myself harm.

Would appreciate the feedback!

Thanks!

Post Edited (joogle) : 10/31/2012 9:10:03 PM (GMT-6)


joogle
Regular Member


Date Joined Apr 2012
Total Posts : 60
   Posted 7/13/2012 2:24 PM (GMT -6)   
Hi - I want to give a follow up - so after leaving PPI, a month exactly later I experienced heartburn, that's when I posted here, I never experienced heartburn before, I had initially gone due to pain in the stomach.

I went to two GI after I had the bout of heatburn for two days, zantac was not helping, so both said I need to go on PPI again. I took 20mg Achiphex, but that did not heal the symptoms/esophagus, so I started taking 2 X 20mg.

Right now, I am still taking it, and in two weeks will try to go down to one pill a day.

I specifically asked the Doctors, that I never had heartburn, now that I stop PPI I experienced it. I asked about acid rebound, they agreed it's possible, but they told me when I was off PPI I should not have had to take Zantac twice daily.

They said my symptoms were still not in control, hence zantac was not working properly.

I'm 31, and am frustrated at the fact that I went in exactly one year ago for pain in the stomach, but now seem to be in a worse position.

Both GI said I may have to take this long term and one said if taking it every other day was working for me, i should stick to that regiment.

I was wondering if there are any non-invasive test that can be done to figure out if it maybe something else, anything my PCP can write. Also, I am taking vitamin D prescription supplements to ensure I have enough calcium.



Would appreciate any feedback as to how I can get back to where I was and to possibly get off the PPI.

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 7/13/2012 7:45 PM (GMT -6)   
joogle,
 
One thought  comes to mind - have you ever talked with your Dr. about any other possible causes for your heartburn?
 
Common medications taken for other problems, including over-the-counter and prescription drugs, can increase the likelihood of heartburn. That includes medicines used to treat asthma, high blood pressure, heart problems, arthritis or other inflammation, osteoporosis (low bone density), anxiety, insomnia, depression, pain, Parkinson's disease, muscle spasm, or cancer. Also, drugs used for hormone therapy can be a heartburn trigger.
 
I am sure you will be hearing from other members with words of wisdom for you so hang in there and know we are here to support you.
 
Kindly,
Kitt
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"I am not afraid of storms for I am learning how to sail my ship" ~ Louisa May Alcott

joogle
Regular Member


Date Joined Apr 2012
Total Posts : 60
   Posted 7/13/2012 7:49 PM (GMT -6)   
Thank you for the reply.

I don't take any other medicines at this time, the only supplement i take is prescription vitamin d capsules.

joogle
Regular Member


Date Joined Apr 2012
Total Posts : 60
   Posted 10/31/2012 12:04 PM (GMT -6)   
Hi - I stopped taking PPI two months ago, the only symptoms I have right now are sort of heart burn type feeling. Even my belching is very minimal to none that I use to encounter in the past.

Even it's hard to describe if its heart burn, because I don't get like a burning feeling, just discomfort, it's a dull feeling. Regardless, I'm pretty sure it's heart burn.

I take DGL on/off, I was doing pretty alright with 20mg Pepcid, but since I ran out of the store bought one, when I called the PCP to call in prescription, he gave me 40mg, which is fine too.


I had the barium swallow done last Wednesday this is the report:

TECHNIQUE: Following the oral ingestion of barium and air, multiple spot and overhead projections of the esophagus were obtained .

FINDINGS: The esophagus distends normally with no evidence of stricture, narrowing, inflammatory change or obstruction. No evidence of mass or extrinsic compression. No hiatal hernia is demonstrated. Moderate gastroesophageal reflux is present.

IMPRESSIONS:

1. Moderate gastroesophageal reflux is present.
2. Otherwise normal contrast esophagram


-----------------

This is 2 months after I stopped the PPI drug, the only other medicine I have been taking is 40mg (Famotidine) once per day, but I did not take it the day of the exam as I went there on a empty stomach.


Need input, what should I take out of this exam, should I continue to stay off the PPI, what do I take from this exam?

Thanks

joogle
Regular Member


Date Joined Apr 2012
Total Posts : 60
   Posted 10/31/2012 10:10 PM (GMT -6)   
Hi - anyone have any input? Thanks!

greatunclebill
Regular Member


Date Joined Oct 2012
Total Posts : 144
   Posted 10/31/2012 10:29 PM (GMT -6)   
you need to find a doctor you are going to trust and do as they say without making your own decisions on what to cut or add. if you can't find a doctor you trust and listen to, it will stay out of control forever. i say this with over 40 years experience with painful hiatal hernia and lots of reflux.

if it goes completely out of control and hurts no matter what you take, it could be h-pylori. h-pylori is an inflammation of the stomach lining or acids that is treated with an antibiotic. a simple blood test discovers h-pylori.
gout, sleep apnea, asthma, copd, high BP & cholesterol, Gerd, light headedness, muscle weakness.

USAF MSgt (E-7) Retired
1968-1990

joogle
Regular Member


Date Joined Apr 2012
Total Posts : 60
   Posted 10/31/2012 10:36 PM (GMT -6)   
Well the two doctors i visited they simply say take PPI meds long term (for life). I was given PPI for stomach pain last August, after it resolved the pain, I stopped the PPI, which brought upon heartburn.

I never had heartburn in my life. Went to GI again, they say more PPI. One of the GI said i should just stay on it forever and take it every other day, while the other one said just continuing taking it for life. I took it again and left it two months ago, am doing ok not too bad, the first time giving it up was more painful.

I was tested for h.pylori last August with endoscopy and blood test, everything was negative.

I decided to get a barium after leaving PPI two months ago and I pasted results of report above, it just said moderate reflux. This is after the doc had me drink the liquid while lying down on my side, upside down, in all weird positions.

My next step was to possibly go another month on Pepcid, except take 20mg twice a day to see how things go.

I have heard about Naturopath and MD (who has both degrees) but unfortunately he's very expensive, approximately $400 per visit.

My biggest problem with PPI is the side effects especially with osteoporosis. What upsets me the most is getting this heartburn a symptom i never had after stopping the PPI


Thanks

greatunclebill
Regular Member


Date Joined Oct 2012
Total Posts : 144
   Posted 10/31/2012 11:12 PM (GMT -6)   
the doctors are right. the meds are for life. in time you need more and stronger medicine, not less. no matter how you got it, it's there.

Thank God these modern medicines are available for you. when i was having horrible pains 40+ years ago, rolaids and tums were the best medicines available and it really sucked. today these medicines also dissolve ulcers. back then if you got an ulcer they cut you open. if you let it go and it perforated it was life or death emergency surgery.
gout, sleep apnea, asthma, copd, high BP & cholesterol, Gerd, light headedness, muscle weakness.

USAF MSgt (E-7) Retired
1968-1990
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