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sunbeam48
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Date Joined Jun 2011
Total Posts : 795
   Posted 8/18/2011 4:07 PM (GMT -6)   
My first diagnosis was acid reflux in February 2011, with chest pain.
My second diagnosis was gastritis in March, started PPI with sulcrate.
My third diagnosis was GERD in May.
My fourth diagnosis is Barrett's esophagus in July (seen by Gastroentologist with upper endoscopy).

I'm thinking I might have had all of these conditions since March or before. My symptoms haven't changed much. Just when I think I'm getting a little better, I get worse. I am SOOO tired of the pain in my stomach.  I hate the PPI's because they contiribute to bone loss;  at age 57 I already have lots of arthritis, and stenosis with neurological problems due to the arthritis in my back.  My primary said I should not come back to see him about this GI problem, the gastroenterologist said "let us know how you are doing in 2-3 months".  I eat very carefully but not perfectly.  I doing everything I'm supposed to do, including sleeping on a wedge (even though it causes back pain, with poor quality of sleep).  This all feels so hopeless. 
 
How long should I hang on before asking for a different medication?  I was on Prilosec for 2 months, double dose Prilosec one month, Nexium since July 10.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/18/2011 4:23 PM (GMT -6)   
The wedge gives me backaches too. I found by putting bedrisers at the head of my bed my back doesn't hurt as bad.

Have you considered the surgery since you have Barrett's?

Make sure you have an pH test, barium swallow test, and manometry test. They will tell if you need the surgery.
Joy

chaoticme
Regular Member


Date Joined Aug 2011
Total Posts : 137
   Posted 8/18/2011 6:29 PM (GMT -6)   
I too use a wedge because I was sliding down to the foot of the bed when it was on risers.

I added padding at the same angle as the wedge and also use a pillow so I'm almost sitting up (sideways) in bed. I think this has helped me tremendously even though for the past several months I was in misery. I have LPR but was able to sleep at night because the acid didn't rise to my throat.

My PCP changed me from Zegerid to Dexilant and it worked almost immediately. He said sometimes PPIs will stop working for you and it's time to change it. My GI doctor didn't suggest changing.

I had lab work this past Monday and my PCP checked my calcium and D levels. It might be a good idea to ask your doctor for this test. He also told me to be sure space my PPI and calcium/D supplement.

Were your first three diagnosis by endoscope?

Also, I now sleep on my left side only.

God bless,
Cme
Specific (cancer) phobia, depression, GAD, fibro, hypertension, GERD

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7181
   Posted 8/18/2011 6:40 PM (GMT -6)   
Hi Sunbeam,

I'm happy to see your thread on the main page! It looks as if you've already gotten some good responses.

PCPs look at the whole person, and generally know you a lot better than a GI specialist. I switched specialists because my first one was dismissive and unhelpful. My second GI doc was a great listener and very responsive.

How far apart are you taking your PPI and calcium? I'd never heard that before. It's some good information.

Happy Healing. It takes time and patience to heal an upper GI inflammation, but eventually it will get better. I've had multiple gastritis/esophagitis flareups (before I had a Nissen surgery) and know how hard they are.

Good luck! Hang in there.
Denise

sk55
Regular Member


Date Joined Jun 2011
Total Posts : 225
   Posted 8/18/2011 7:29 PM (GMT -6)   
Hi Sunbeam,

here is a couple things that worked for me. Don't underestimate the effects of diet.

I was feeling the same way in the past, i thought i was follow a good diet. However, after starting a food log i was cheating here and there...

example i was dropped to 1 cup of decaf coffee a day (but still had issues).. I finally quit all together.

I only started feeling relief when i kept trying to make my diet more perfect. I think its still a work in progress, its very easy to stray.


Sometimes its a food allergy... i had some gastritis in the past only to find out it was related to milk (which is fine for me when my stomach is okay).

It could be one thing that really affecting you, once u figure it out you might find significant relief.





IMO wedges dont really work cause you tend to roll off them at night. I move up to lifting my bed, which helped alot.


If you dont get any more relief in a month with diet changes or life style changes, I would go see another GI DOC. He might have a better idea of what the problem really is.



Jesse.

sunbeam48
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Date Joined Jun 2011
Total Posts : 795
   Posted 8/19/2011 5:07 AM (GMT -6)   
Thank you for all of your posts.

Couchtater, I guess I need to get those risers. This means leaving the bed I have shared with my husband for over 30 years. I don't blame him for not wanting to sleep on an elevated bed. He has enough trouble sleeping due to restless leg syndrome.

I won't be asking about surgery unless a doctor pushes me in that direction. Overall, I'm thinking they beleive it is just too early to consider surgery. I imagine I should be trying different drugs before surgery is considered, but I'm hesitant to even take the drugs because of the significantly increased fracture risk. But I am taking the meds right now.

Here's the link to the article about fractures. Notice that it is a review of 11 studies, not just one study, so it bears more weight:

http://www.webmd.com/heartburn-gerd/news/20110509/study-proton-pump-inhibitors-linked-to-fracture-risk
 
Calcium is best taken twice per day with food. I take it with breakfast and dinner. My PPI is taken in the a.m., right when I get up. That's the best time of day to allow the time between pill and food, at least 1/2 hour. I continue to lose weight, and am not over weight. If I take the pill when I get home from work, I can't have my snack before dinner. Of course the eating window closes at 6:00, so there's really not any time to work with. I eat a good lunch which I prepare at home: usually brown rice, beans, and veggies from my garden. But I don't have time at work to be eating more frequently. My occasional indulgences are a couple of pieces of tomato, a small cup of ice cream, a couple of glasses of wine on the weekend. I know I need to lose the wine, but I do keep a food diary, and it doesn't seem to make a difference. Nothing I do seems to make a difference, hense I feel hopeless. In March/April I adhered structly to the food guidelines, and it didn't make me feel much better. I think the sulcrate helped.

My first 3 diagnoses were with my PCP, no endoscope. I imagine that's where everyone starts out. He told me I should be feeling better in a month, two at most.

sk55
Regular Member


Date Joined Jun 2011
Total Posts : 225
   Posted 8/19/2011 9:59 AM (GMT -6)   
Hi Sunbeam,

I feel for your pain. I have certainly been there. Try to stay positive.


I think you can still work on your diet, your indulgences may be preventing you from getting relief.

I think that's the hard part with normal GERD, u can still eat some what normally. People with ULCERS and LPR are kinda forced by their sickness to eat very bland diets.



Suffering from LPR reflux, i had to eat chicken soup was the only thing i ate every day for a month to stop the pain in my neck.

These things can take time, so i would stick to 1 or 2 foods for a month or 2 then measure your progress.

For me LPR was sooo horrible, it forced me on a super strict diet, in that sense it was easier for me.

I think some people with GERD try to eat somewhat normally, so they never seem to make any progress.

Then you read about some people Very Strict Eating Regimes and see them returning to normalcy.


Thats my just my humble observation from reading other people post.






Feel better.


-Jesse

chaoticme
Regular Member


Date Joined Aug 2011
Total Posts : 137
   Posted 8/19/2011 11:03 AM (GMT -6)   
Oh I could have written Jesse's post!

LPR has done a number on me and thought me how to eat by trial and error! Hopefully my ulcers haven't returned. I'll be getting a scope probably in January. I think I'll be getting a duo - endoscope and colonoscopy at the same time. Well, the upper end before the lower one. My GI doc said it depends on which end is rolled into the room first! :o)

I have eaten home made chicken soup, basically water that I boiled skinned pieces of chicken in. I boiled then added white rice to the broth, put all in a blender. That was my diet for weeks on end. I slowly added small pieces of steamed broccoli and finally ate a couple of crackers with my 'soup'. I thought I was in hog-heaven!

My diet now is select steamed veggies and some fruits. I'm able to eat baked yams (sweet potatoes), Irish potatoes and brown rice. I don't ever eat meat. I might have an ounce of skinless baked chicken or fish once in a while. And of all things, I can eat Cheerios! So my breakfast consists of Cheerios and non-fat (dry) powdered milk. Sometime I add small piece of banana.

I had to give up my beloved coffee, including decaf completely. In it's place, I drink Chamomile tea. Not the same but the Chamomile is very good for the digestion system.

I've lost a lot of weight and I guess I'll be losing a lot more since I have to follow a really restricted diet.

I take my PPI, Dexilant, at 6:30 AM, have my breakfast at 8:30 and desolve my calcium+D (horse) pill in a small amount of water to avoid irritating the throat. At noon I take my multi-vitamin after a really light cup of soup and maybe a small Romaine lettuce salad, no trimmings. I take the second calcium+D after dinner which is around 5 PM. No eating after this hour.

This system works for me but it took a long time for me to get it right. We all seem to vary in our diets but the bottom line is, we know what the others are going through.

This is absolutely the best board I've ever been on. The people are so very supportive and compassionate. All posts are answered, regardless of subject matter or even it doesn't really make much sense. It's the fantastic support I've had here that has helped me by encouraging me to hang in there! 'Thank you' seems inadequate.

God bless,
Cme
Specific (cancer) phobia, depression, GAD, fibro, hypertension, GERD

somedaysarediamonds
Regular Member


Date Joined Jul 2011
Total Posts : 363
   Posted 8/19/2011 11:33 AM (GMT -6)   
Hello and welcome, Sunbeam

The interesting thing about this forum is that we can all have the same symptoms because there are just so many symptoms a person can have and we can all respond differently to not only the symptoms but to any potential treatment.

Some folks control their symptoms with diet and a more holistic approach and it works for them. Some control them fine for years and years with the right medication(s). Some have to change medication from time to time because they may help them for a time but eventually quit working.

And some people try all of the above for years and years and never really find any optimum relief. We are all so very different yet our stomach and esophagus and throat and sinuses and so many parts of our bodies can be impacted from the acid just as if we were all one person after all.

Once your battle with acid becomes all-consuming and is taking up all your time and energy sometimes it is the right thing to do to consider other alternatives and those are between you and your doctor/doctors.

I know the biggest mistake I made was trying too hard to make the medicines work - waiting too long for them to "kick in" after changing meds and all this after losing weight, buying an expensive adjustable bed, giving up offending food and drink and being almost apologetic to my GI because I wasn't getting better.

When I finally realized that I had to be my own advocate and stand up to my GI doc, he told me about alternatives to suffering and I chose one of them about 3 weeks ago.

What fixes you or me or anyone else on the forum may be different but if it works that's all that really matters.

I wish you good fortune on your search for what will alleviate your problems.

I'm not well yet but I'm much better than I've been in years.

Take care,
Rita
GERD doesn't exist in a vacuum. . .

Don't let the sound of your own wheels drive you crazy. - The Eagles

Lap Nissen Fundoplication August 1, 2011
Anxiety? You betcha. . . :)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/19/2011 3:39 PM (GMT -6)   
Sunbeam, how about getting one of those adjustable beds that Rita mentioned?
My parents have slept on bedrisers for nearly 15 years together. First my dad had reflux and raised the bed 5 inches. Later my mother developed it, too. Today they have the bed raised about 10 inches. Mama is shorter than daddy by about a foot, so she slides down to the foot of the bed during the night, wakes up, crawls back onto her pillows, and goes back to sleep. :))
They refuse to sleep apart...married 53 years. :)
Joy

sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 8/19/2011 4:48 PM (GMT -6)   
Jesse and CME,
How did you figure out your diets? Did you work with a dietitian or nutritionist of any kind? Can you recommend a book or a web site? How did you avoid malnutrition on such a limited diet?

Once I figure out what I want to do, I may return to my PCP and ask for his assistance in getting there.

Couchtater, I'll think about that adjustable bed. But doesn't it work the same as the wedge, just elevating the head? That's what is killing my back.

davinci817
Regular Member


Date Joined Aug 2011
Total Posts : 119
   Posted 8/19/2011 4:53 PM (GMT -6)   
Hi Sunbeam. Glad you are asking all of the things that I want to ask ha ha.

I am curious about figuring out the diet as well. Taken a look at a few books on Amazon and wondering if there are any that would be recommended. Just seems there isn't a real rhyme or reason to some things I eat. One day I can handle a small tuna sandwich, the next day I can't.

So far one of my favorite things has been the McDonalds pineapple mango smoothy. This is my breakfast five days a week. It is the only thing so far that hasn't made me feel ill at all.

chaoticme
Regular Member


Date Joined Aug 2011
Total Posts : 137
   Posted 8/19/2011 6:01 PM (GMT -6)   
Sunbeam48, I have learned what to eat and most important of all, what not to eat. I did it on my own as I eventually realized there isn't any acid reflux diet that suits me or anyone else I know of.

I put a 2 subject composition on my breakfast table and ate only one thing at a meal. If in 2 hours I don't feel the horrible pain begin or in some cases, increase, I list that one item in my "Can Eat" list. If it hurt, it's posted in the "DON'T EAT" category.

Today I ate things in my CE list. Then I tried eating a very small piece of fresh pineapple this afternoon. In about an hour I started hurting so this went into my DE column. I'll never touch it again!

I believe it's simply a matter of what we as individuals can or cannot eat. I have tons of material on acid reflux diets and I've never any to be fool proof for my problem.

Best of wishes, God bless,
Cme
Specific (cancer) phobia, depression, GAD, fibro, hypertension, GERD

sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 8/19/2011 6:29 PM (GMT -6)   
Cme, I don't have specific responses to foods like you do. If I eat too much, or eat fatty food my stomach hurts and I feel generally uncomfortable. I don't have heartburn. Mostly my stomach just hurts no matter what I do or don't eat. I also have had a lot of belching, which has been reduced by Nexium. But today I got stomach pains and belching from drinking plain water, and that has happened many times in the past.

sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 8/19/2011 6:35 PM (GMT -6)   
Davinci, here's a link to an interesting list of foods that do or don't cause problems for individuals. It is amazing how individual the differences are:
http://manageyourheartburn.com/hblist.php
 

davinci817
Regular Member


Date Joined Aug 2011
Total Posts : 119
   Posted 8/19/2011 6:49 PM (GMT -6)   
Hey sun, how does this list work and is it through this site or just a random site that any passer by can add to?

sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 8/20/2011 4:29 AM (GMT -6)   
Davinci, it is a separate site. Anyone can add to it.  Anyone can also post on this site.

Post Edited (sunbeam48) : 8/20/2011 6:33:28 AM (GMT-6)


mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 8/20/2011 1:38 PM (GMT -6)   
Hi Sunbeam,
I've not been able to pinpoint any particular foods that cause my GERD. There are some things that make it worse, like coffee, tea and alcohol but I never reached a symptom free state by dietary modification. I did find drinking water a big problem until I stopped filtering it; my neutral tap water becomes acidic if filtered with a jug filter. So if water bothers you, you may want to check the pH of it.

We have the head of the bed raised and my hubby doesn't mind. Sadly it hasn't stopped him snoring though ;-)

GERD involves a lot of trial and error and perseverance, both with food, medication and lifestyle. I don't think any other illness so represents the old saying "one man's meat is another man's poison" !

You WILL make progress, it just takes time!

MMM
New stuff: GERD. Interstitial Cystitis
Lifelong stuff: Food allergies, eczema, asthma

aeshleyrose
Veteran Member


Date Joined Jul 2011
Total Posts : 656
   Posted 8/20/2011 2:18 PM (GMT -6)   
Hey Sunbeam!

I agree 100% with what the wise MMM has said. Mine seems to change day to day. Once (about 3 months ago) I made a cream of chicken dish with literally 1/4 tsp paprika and I was up all night. The day before yesterday, I was at a friend's house and she served me another chicken dish with what I believe were red pepper flakes and didn't have a problem. Sometimes I can't make heads or tails of it!

I don't tell you this to scare or discourage you; I tell you so that we are all being realistic, but also to share with you that the bad days make your good days all the better. It really is like a gift, the days I don't have heartburn.

As far as changing your meds, I read somewhere (can't remember where) that each PPI takes 3 months to properly evaluate if it's working for you; I am seeing my doctor on Tuesday and will update you on what he says. He is a GP, however, I have about a million questions for my GI doc (to whom I believe I'll be referred Tuesday - fingers crossed!).

Hang in there! We're all here for you, and I hope you have some relief and good days soon :)

Love,
Ashley

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/20/2011 2:35 PM (GMT -6)   
As far as diet goes it really depends on you personally.
I could eat chocolate with no trouble, but give me peanut butter and jelly and I'm on fire all day.
It's mainly trial and error.

In my honest opinion, PPIs and diet changes are not a cure. They are bandaids. If you have chronic GERD and you're in misery- you need the surgery. Get tested and find out the cause of the GERD and get it fixed.
Joy

sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 8/20/2011 7:12 PM (GMT -6)   
Thanks for the comforting thoughts that support this perception I have: though I can make my symptoms worse by eating poorly, I cannot make them better by eating perfectly. But maybe I am wrong: because of the suggestions here, I am planning to try at least a week or two of a very limited menu: maybe just chicken, rice, fruit and cooked vegetables. It won't be this week because we are going out of town next weekend. But soon.

Joy, I have read that surgery over time is no more successful than meds. Can you point me to some data in favor of surgery? I have read so much, I am not sure of my source.

Ashley, thank you for the 3 month drug trial guideline. At two months I will call and make an appointment.

MMM, thanks for that encouragement that I WILL find improvement. I have lost so much so quickly on this front. This week I have developed a cough with phlegm. I hope it is a cold, but I don't have other symptoms. I think I have just lost my singing voice. I used to sing in two choral groups.  I haven't yet complained about the fact that gardening is one of my great joys in life, and it looks like I need to abandon my plant children.  But not before the next tour arrives in early September.  The downhill slide just seems to go faster and faster.

Post Edited (sunbeam48) : 8/20/2011 7:17:25 PM (GMT-6)


kyheart
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Date Joined Apr 2011
Total Posts : 513
   Posted 8/20/2011 7:29 PM (GMT -6)   
Joy is so right.. Diet restrictions and medications can do only so much. I too had GERD for many years and each time it got worse the Dr would increase my medication or change it to something stronger.. all the while I was trying to control my diet too... fortunately I never had any adverse reactions to PPI's, they all worked for a while and eventually the nausea and reflux and acid and stomach pain all came back to some degree. mad cry

I heard from my gastro doc after the stomach emptying test and the endoscopy and several other tests that there was a 'surgery' for the problem of Hiatal Hernia.. he said nothing about it being for GERD also.. I just got to the point that I was miserable and the gastro guy wasn't offering any solution, so I asked my PCP to refer me to a surgeon that was very learned in this procedure that I needed.. he did and I went and the rest is history... smilewinkgrin turn

Discuss your issues with your doctor.. for some reason my gastro just didn't embrace the surgery .. I live in a very small town and there is only 1 gastro... so I had to rely on my PCP for the advice I needed on this and he is the greatest... don't continue to hurt and suffer for years when the inevitable result will probably be surgery anyway..

You have options... go over them and seek a solution not a bandaid.. please. you will be glad you did..

Reach for the Sunshine... Rainbows will follow cool
Sandi

davinci817
Regular Member


Date Joined Aug 2011
Total Posts : 119
   Posted 8/20/2011 9:00 PM (GMT -6)   
How long does one go before surgery is necessary? As noted on another thread, they have me in a holding pattern since I am only six weeks out from gallbladder removal. Granted my symptoms of GERD are not as bad now that the ugly little green creature is gone from my body. Still having flare ups that are not pleasant at all. Just curious if this is something that is provided as an option or as a last ditch effort.

Also when it comes to the Hiatal Hernia, how much does that play in the role of GERD? Have not gotten that far in my reading since they just made me aware of this Thursday. Saw a brief little writing that most people with a hiatal hernia don't have GERD. That seemed wrong to me but what do I know?

KY did you have the hernia surgery then? If so, did it help with the GERD issues? BTW I am just outside of Louisville. Assume you are from KY originally?

kyheart
Veteran Member


Date Joined Apr 2011
Total Posts : 513
   Posted 8/20/2011 9:24 PM (GMT -6)   
I am originally from the Erlanger/Elsmere/Florence area.. now I live in Florida. My heart is still in Kentucky, thus Kyheart.. where outside Louisville? I have family all over that area..

The Nissen Fundoplication was done for the GERD the Hiatal Hernia surgery was done at the same time. It was immediate relief for me. (this is not always the case, some have slight reflux right after the surgery. But, the reflux abates quickly) I have not had to take a Nexium (PPI) since the morning of my surgery. I can sleep on my back and I have no more asthma issues.. The pain from my hernia is gone and I have no more breathing problems.. GERD and the hernia were hand in hand when it came to my pain and problems...

Please stay with us here at the forum, we welcome you into the family and we will be here for you whine or praise.. we understand what you are feeling.

Reach for the Sunshine,, Rainbows will follow
Sandi

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 8/21/2011 4:29 AM (GMT -6)   
Davinci, When I first had reflux and/or gastritis in 2007, my symptoms were identical to those I have now. This year I've been told I have a hernia which is small, but 3 years ago there was no hernia. So I've had the same symptoms with and without a hernia! So I'm not sure having the hernia fixed would do much for me. In any case I've been told it's not bad enough for surgery.

PPIs may be a bandaid, but that's all that's on offer to some of us, which is why we are constantly looking for other solutions!

MMM
New stuff: GERD. Interstitial Cystitis
Lifelong stuff: Food allergies, eczema, asthma
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