Severe erosive esophagitis help please

[HayleyBW]

Hi I was diagnosed with moderately severe erosive esophagitis and chronic mild gastritis a month ago via endoscopy and biopsy. I have been on 40 mg omeprazole QAM for 4 and a half weeks and 300 mg ranitidine Qhs. I have no relief of my symptoms. Esophagus feels as something is stuck in it much of the time with sharp pains and burning in chest, arms and back much of the day as well. It doesn't matter if my stomach is empty or I have eaten. Symptoms are the same and I am getting very little if any relief from the meds.

Is there anything that can help or am I in trouble? I am very worried. I don't smoke, drink alcohol or eat spicy foods and always maintained a very healthy life style. I am mainly a vegan and exercise every day. I would so appreciate any advice. Thank you!

[selmaS]

  Hi and welcome to the GERD forum.

There still may be something in ur Vegan diet that is causing ur symptoms to flare, try keeping a journal of what u eat, when , how much, and how u feel after...as it may be something most would not have a reaction to, we are all different and it may be something u consider safe with GERD...but for u it is not.

Also talk with ur Dr and see what suggestions he/she may have as it could be the meds u have do not work for u, or it may just take a little longer for results....I know some it took up to 6 weeks b4 seeing results...so be patient and talk with ur Dr about the meds if u do not feel better and talk over the journal and see if ur Dr can spot an issue in it for u.

Good Luck

[HayleyBW]

Thank you so much for your reply Selma. I am seeing a new gastroenterologist tomorrow and hopefully he will be able to put me on a different med(s) that will provide relief. I am feeling worse than before and it's overwhelming to think I might never feel better. It's 24/7 of being so uncomfortable. I appreciate the info, thanks again.

Best,
Hayley

[HayleyBW]

New gastroenterologist put me on 60 mg dexilant bid (and has discontinued the omeprazole and ranitidine) and is doing another endoscopy tomorrow AM because he thinks it could be related to my shingles outbreak in January.

He said my case is an interesting one and is one for the journals. Great lol but at least he listened to what is happening with me unlike the other gastroenterologist. Fingers crossed he will be able to figure out what is happening re my back, arms and chest burning, esophagitis and how to help.

[selmaS]

  Goodness no idea u had shingles....it is possible for them to go inward and I pray that is not the reason....

Do keep us posted on how u r progressing.

[HayleyBW]

I will Selma, thanks. Now you have me worried. When he mentioned the possibility today (which I had thought of last month when this all started but all my doctors said it couldn't be) I was actually relieved there might be an answer and help. Now though I am worried about what that might mean. :(

[selmaS]

  I didn't mean to worry u, just think it may play a role in what is going on...ur Dr has more info on what to look at then someone with no medical training, so if ur Dr didn't make a big deal of it,..then relax....

They can treat it with anti inflammatory meds  and rest...

Don't let my comment upset u....wait to see what the Dr says....

[HayleyBW]

Hi Selma, Thank you so much for replying to my posts. I really appreciate it! I had the endoscopy this morning and really like this new gastroenterologist. He said my esophagus is fine and so is my stomach.

I have a loose (?) lower esophageal sphincter that meds can control and a hiatal hernia. He biopsied the esophagus to see if there is a viral infection and I am scheduled to see him April 4th. In the meantime he has me on 60 mg Dexilant bid. He spoke to me while I was in recovery so I was a bit out of it and fuzzy on some of the details (i.e. loose LES) but overall it was encouraging news for me. Weird that severe esophagitis is gone in a little over 4 weeks. The thing is it still feels like food and pills are getting stuck in my esophagus but I am going to be patient and let the dexilant work (hopefully) and see what the biopsy results are at my next gastro visit. And hopefully the burning will abate.

Thanks so much again Selma. I truly appreciate your help!

Best,
Hayley

[Lillye]

I have the exact same symptoms....I eat mostly vegetarian too, although I do include seafood a few times a month...I am in a flare up of symptoms right now too and nothing seems to help...two years ago, I had extreme nausea with thie heartburn for six months-I lost 30 pounds and was already thin but have gained back the weight....I completely got off of all PPIs and ranitidine and wash fine most of the time for months at a time...however, every four to six months, the reflux starts again...this time I have the burning and pain in my upper back, chest and even shoulders...it worried me so much I went to a cardiologist and had a stress test and ultrasound...he said all was well but every evening, it really feels terrible....
Two years ago, I read some books on digestive problems, one of which was "the inside tract" by Dr. Gerard Mullin, an intergrative gastroenterologist with John Hopkins.....his suggestion was to eat less carbs and he suggested some herbal preparations....that worked for me...I need to begin that again...I also took vegetarian digestive enzymes which seemed to help...Selma suggested the apple cider vinegar in water which could also help..
I am going to my gastro on Monday and am going to request the devil ant because

[Lillye]

Sorry , I got cut off---I am going to request the devil ant because a friend of mine has found total relief with it....have you noticed a difference yet?

[HayleyBW]

Hi Lillye, I am so sorry you are suffering with all of this burning and discomfort too. It is really difficult and my heart goes out to you. The dexilant seems to be helping so far (it's my third day on it now) but I am early into this new treatment.  My internist also sent me to my cardio when I first started experiencing the burning just to rule out other issues and all was fine regarding the heart.

My gastroenterologist told me not to do anything natural or med wise except for the dexilant right now-I asked him about drinking aloe which I had started doing a few weeks ago and he told me to stop. I believe in the healing of natural treatments but for now since I am trusting this doctor I will do as he asks and see what happens.

It's amazing how every doctor has said back and arm burning cannot be related to heartburn and yet you have the same symptoms as I do. Thank you so much for sharing and I am sending healing vibes your way. What is the devil ant? And what digestive enzymes have you found relief with? I experience burning whether I have eaten or not so it is confusing to me-is my body producing acid all the time and why? And what can I do to stop it.

Sorry for all the questions. It's so frustrating to be dealing with this for so long without concrete answers and not knowing what the future holds. Hugs to you.

[selmaS]

  Sounds like u got some good news and in time will heal.....

  Keep us posted on ur progress : )

[selmaS]

  Hi and welcome to the GERD forum.

It sounds like you are on the right track with the Drs you are seeing and the diet modifications you are trying.
I would like to add, I never advocate for anyone to take Apple Cider Vinegar (ACV), I myself  drink apple cider (NOT VINEGAR), ....in research I found that Dr Oz has stated taking the ACV can add more acid to your system...we would advise your Dr  do a PH study to see if your levels are high or low, as the symptoms are similar....and  adding more acid to one that is already high would not be helpful. I also do not advocate trying what works for  others without discussing it with your Dr to see what is best for you.
Do keep us posted on what your Dr advise you try next : )

[Lillye]

Hi Hayley,
I thought I answered your last post but didn't"t...thank you for responding..I meant to say Dexilant but this silly computer changes my words....I can't remember the digestive enzyme brand but they were given to me by an intergrative medicine doctor.. I know they were plant based and contained no acid...
How are you feeling on the Dexilant?

[HayleyBW]

Hi Lillye,
Thanks so much for your reply and thanks for asking.

I thought the Dexilant was helping for the first few days but as of Thursday evening and Friday morning my chest pain and acid burning was back.

I am worried because what does this mean for my prognosis if none of the proton pump inhibitors or acid reducers provide me with relief? From my reading it seems surgical options are not very successful for weak LES and hiatal hernia if these are what are causing my sudden onset of symptoms over 5 weeks ago now.

Before Feb 16th, 2014 I was fine never ever having experienced any heartburn or chest pain or esophageal irritation whatsoever and then all of a sudden one day my symptoms started out of the blue with little abatement.

It's weird because I have the chest pain and acid burning whether or not I have eaten anything so it doesn't seem to be food dependent. Is my body producing acid 24/7 and are there any possible (successful) treatment options left to me?

Thanks and sorry for my long post.
I hope you are doing well.

Best,
Hayley

[HayleyBW]

PS Also all the doctors said that my back, neck and arm burning aren't related but they have to be because when my other symptoms are present my back and neck and sometimes arms burn as well. It has to be related. Have you or anyone you know ever suffered with acid reflux burning on the back, neck and arms? Sorry for all the questions but it would be helpful if I knew this was something others experienced and that my symptoms weren't crazy. Thanks :)

[HayleyBW]

Lillye, sorry I just realized you already answered the back/arm burning question a few posts ago on March 26th. I think this constant discomfort bordering on pain is messing with my memory :(

It's so disheartening that so many are suffering with this. I am not young but I am not old (48) and I feel young and besides this I am in good health or at least I was. I just hope there is relief from this...and I hope you are finding relief from your symptoms.

[HayleyBW]

Update-2nd endoscopy (different gastroenterologist)shows no esophagitis, no acid reflux or gastritis or hernia or weak LES.

And now this
Gastroenterologist wants me to see  an esophageal specialist to get a sensor clipped to my esophagus for a couple of days to measure the ph and see if bile etc is coming up. It sounds invasive and I am hesitant but he is being adamant. He said 7 weeks of these symptoms is long enough to not know what is going on.

He also wants me to see a neurologist due to the upper body burning. I also have a chest ache/pain that is difficult to describe.

I am more worried than ever because now I wish it was as straightforward as esophagitis and acid reflux.

He still wants me on heavy dose proton pump inhibitors for now as well. He switched me to 40 mg Nexium bid since the Dexilant didn't do much for me.

Does anyone have any insight as to what could be causing these symptoms of chest pain and chest/back/arm/neck burning?

Thanks for reading and any advice you might have.

Best,
Hayley

[Lillye]

Hi Hayley
I am so sorry I haven't responded in awhile but I changed computers and bought a MAC and unintentionally sent most of my emails to "junk mail"...
I am so sorry you are having these symptoms...and yes, I experience similar pains although the past week has been somewhat better for me... My pains are like a deep ache in my chest, upper back and shoulders, neck and arms, along with burning in my throat and esophagus...
In 2011, it was horrible because it was accompanied by nausea so I ate very little and lost 30 pounds...I weighed 92 pounds and am 5'3"...I really thought it was something terrible but each invasive test showed nothing wrong except mild gAstritis ....I had CT scans, MRIs, small bowel studies, endoscopy, colonoscopy , HIDA scan, gastric emptying studies, and some I don' t even remember...all came back normal except HIDA showed an ejection fraction of 30, which is low so they suggested removing my gallbladder...I consented but the surgeon said I had no stones nor inflammation and my symptoms did not abate afterwards...then the GES showed slower than normal motility so they said I had mild gastroparesis and I was put on more PPIs, h2 blockers, car agate, erythromycin and domperidone....I finally, after seven months began having some good days, began eating, got off the meds, started walking and gained back the 30 pounds I lost...it is still a mystery to me...I, like you, never has GI issues before 2011 except once when working on my PhD, had an inflammatory colitis for a few months...that was 30 years ago...
In conclusion, although I go through good periods, I get flare ups of the GERD and the pains in chest, back and arms...I am 64, but before this, I ran 5 miles 5 days a week and did Pilates, dance and yoga....I do walk a few miles each day again and go to Zumba twice a week but I just feel like this has been a tough journey....I am always relieved when tests come back normal, but get frustrated because it makes me feel like I am going crazy...
You will get better and I am sorry it is so difficult right now....
Also, sorry for the long post but didn't know how to explain all of this briefly...
I would let your doctor do the esophageal Manometry because it could be a motility problem...it can be brought on by a virus and usually gets better eventually...you live in an area where you have access to excellent doctors...I pray that you will begin improving soon...some things which seemed to help me were massage, acupuncture, cranio sacral and seeing an intergrative doctor....
Please let me know how you are progressing...sending blessings your wat....

[HayleyBW]

Dear Lillye, thank you so much for your response. I am so terribly sorry for all you went (and continue) to go through. Thank you for sharing with me so generously. My heart goes out to you and I hope you continue to have more good days than not.

My chest discomfort/pain almost feels like a weight is on it with the burning and the more I think about it the more frustrated I get because the cardiologist did absolutely no tests on me whatsoever. She listened to my symptoms (last month) and said it was not cardio related. Sigh. So tired, so frustrated, so overwhelmed.

Getting a neuro appointment is a challenge as well because all the recommended neuros are booked till June. I have not yet called for the esophageal specialist appt (manometry is the name of the test? I didn't know, thanks) because I am apprehensive for yet another test especially one that sounds scarily invasive but thank you for the advice and I will call tomorrow for an appt probably. We'll see how long I need to wait for that one lol.

Thanks again Lillye and I will be keeping you in my thoughts and sending healing vibes your way.

Best,
Hayley

[HayleyBW]

Update: Saw my dermatologist today and he's a very smart guy. Told him everything and he's now ruling out a number of things including certain cancers. I will be doing a 48 hour urine collection. He also collected a lot of blood from me today and a chest X-ray. I hope they don't find anything terrible.

I also have appointments set up for cardio (again)-based on my derm's rec. neurology, and an appointment with an esophageal specialist.  

I hope they find what's causing my symptoms and I also hope it's nothing awful.

Best,
Hayley

[HayleyBW]

Oh, sorry, forgot that my derm also changed what meds I am taking. He thought Nexium 40mg bid was too much and he also tested me and I am producing too much histamine (did the scratch test) so he now has me on Allegra 180mg in the AM and 1 Nexium 40mg at night and claritin 10 mg before bed. We'll see how that goes. Thanks.

[HayleyBW]

Sorry to bother you again Selma but I would appreciate your input on the arm burning topic. All the gastroenterologists I have seen (3 so far and number 4 tomorrow) say that arm burning cannot possibly be a symptom of acid reflux. Only chest burning and occasionally back burning but never arm burning. Do you have any info on this? If it is true I have no clue why my arms are burning but I seem to remember you said that is one of your symptoms as well. What are your thoughts regarding arm burning and acid reflux? Possible, not possible? Thanks so much.

Best,
Hayley

[selmaS]

  I do have an issue with an area of my arm feeling like I will find a rash of some sort but none is there...and I wonder if it is shingles...I never associated it with REFLUX....

May I ask where on ur arm this is and is it constant? Pain from heartburn does not typically radiate to the shoulder or arms, but it can.

We all feel pain differently so, it is possible that it is related to ur heartburn.....I would suggest u have ur heart checked as a precaution if u have not already, and if it is fine, that it would indicate the reflux as a possibility.

[HayleyBW]

Thanks for your reply Selma. The burning I am experiencing (9 weeks now and counting) is down both my arms from shoulder to forearm though not always. Sometimes it is only the upper arms and sometimes it is only 1 arm and not both. And it is not 100% of the time but at least 50% of my waking hours. That is in addition to the chest,back and neck burning. They don't all occur together.

All the specialists said the arm burning 1. cannot be related to the shingles I had because there was a month lag b/w my shingles recovery and the body burning I started experiencing and 2. cannot be related to heartburn because it does not radiate to the arms. That is why I am so confused. They say what it cannot be but not what it can be due to.

My cardiologist (whom I saw for the first time last month at the rec of my internist due to my symptoms) said it is not heart related but I insisted on scheduling an echocardiogram for this Friday AM at the recommendation of my dermatologist.

I am (besides this at least) in good health and exercise every day with no exacerbation of my symptoms. I am 5'6" weigh 108 lbs. and eat very healthfully. This is all  a huge mystery. I saw a neurologist last Friday and had MRI's of my neck and head and I am waiting for the MRI results but initial neurological exam was normal.

Thanks again for any insight and your time. I am trying to remain upbeat and hopeful but as each week passes with no answers it becomes more and more challenging. My discomfort is intense and the meds don't seem to offer (any?) relief.