Chronic Pain Oldie - Newbie to Barrett's dx. - have questions!

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PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 6/21/2009 4:30 PM (GMT -6)   
Hello, Healing Well friends,
As you can tell, I'm not new to Healing Well. Had a double fusion back surgery that failed in 9/07, and have been dealing with chronic pain since then. Having huge financial problems, increasing health problems and my COBRA insurance ends June 30. While I am researching options (not eligible for our state's Medicaid), I may be in a hole for awhile w/o insurance. So I was trying to get all my doctor's appointments taken care of, 90 days of all my meds by next week.

I had my gall bladder removed when I was 19; I am now 59 and until very recently have had only occasional heartburn symptoms in all these decades. And usually after I ate something exceptionally spicey. Even then, it didn't occur all the time. Chronic pain, like a lot of chronic illness, robs us all of life, and although before my fusion surgery I had been eating reasonably healthy, after the surgery it seemed my appetite changed and I slowly started eating more lousy foods. You know - that once a month trip for McD's fries turns into once a week and on from there. But I still didn't have any major symtoms until earlier this year. After last Halloween there were leftover candies, and usually I eat some and throw them out. I'm not a candy freak. But I guess I've needed comfort foods more and more as I've had one loss after another, which I'll go into another time, but I want to get to some important questions first.

Anyway, starting last fall I was eating regularly and then nightly handfuls of M&M's late at night. But it really didn't both me until maybe around January. Then the heartburn started to get more regular and in March I had a couple of weeks of horrible pain so I put away the M&M's, figuring that would do it. It cut the pain in half, but it still didn't go away, so since I was losing my insurance I thought I'd better have it checked out. I saw a GI specialist in April after Zantac did no good, and I was taking 20mg of Prilosec on my own which seemed to be "sort of" helping. He scheduled an endo and screening colonoscopy for June 8th and I just got the results last Thursday. Barrett's esophagus. And the scariest thing - with mild dysplasia. I am still in shock from this and really need to be treated with some kid gloves at the moment. I was overwhelmed with so much in my life as it was, and now this. At a time when I'm losing my insurance. I'm single, no children, with some extended family who are all pretty busy with their own lives. I wouldn't have even been able to keep my COBRA after being laid off 12/07 (while I was out on leave for back surgery - I was a part timer who didn't work enough hours to be protected by FMLA) if my cousin hadn't helped me pay the nearly $400 premium. She is willing to help a little still, but is on her own and can't afford that much. I'm not looking for info. here on insurance programs, as my head is swimming, and I have a stack of them on the kitchen table right now. Most exclude preexisting conditions, and there's a 1-2 yr. waiting list for our low cost option here in PA. None of them cover medications.

My most pressing question involves all the medications for this that I am really unfamiliar with. I've read a couple of threads here about certain ppi's not working for everyone. I'm pretty used to that from chronic pain. Last Thursday when my doctor called me to give me the results, he upped the prilosec to 20 mg/ 2X day. I know I still have work to do on my diet, but the M&M's and french fries are already gone. But I am not sure if the prilosec is working, and I don't know what I should be expecting. I know it takes a half hour or so to work, and I know to take it on an empty stomach (my cousin is a pharmacist and she helps with some of this) but I almost feel like the heartburn is somewhat worse, especially these past few days. I was on the OTC prilosec, but did get the generic capsules, which I was going to have refilled for 90 days and pick up tomorrow. Is it normal for the heartburn to feel worth even throughout the day - even if you haven't eaten for a couple of hours - on the ppi? Or should I try to see if I can get some samples of nexium to try this week. Would I know if the nexium was any better than the 40mg of prilosec within a few days?

Any help you can give me with the meds issue would be greatly appreciated.

I'll be talking more about how I am scared out of my pants at a later time!

Thank you!

PaLady
BTW the good thing is that my colonoscopy was completley clear, and stomach cell biopsy was negative!

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 6/21/2009 5:06 PM (GMT -6)   

PaLady,

Welcome to the GERD/Heartburn forum.  I am so sorry to hear of your problems.  First of all your chronic pain is tough enough to deal with.  I am wondering what medications you are using for pain as so many pain meds can cause stomach issues for instance Codeine sets my stomach and chest on fire.  Motrin kicks in my heartburn.

Also you have said you stopped many of the bad choices in food that have caused problems for you, how about sodas?   Are you a big coke, or caffeine drinker. I am a Diet Coke junky and have to watch my intake.

Treatment for Barrett's esophagus may start with controlling GERD by making a number of lifestyle changes and taking self-care steps. These actions include losing weight, avoiding foods that aggravate heartburn, stopping smoking if you smoke, taking antacids or stronger acid-blocking medications, and elevating the head of your bed to prevent reflux during sleep.
 
As far as what PPI works best it is often a individual response to the medication.  Prilosec works for me.  I would give it a chance and if you continue to have problems then talk with your physician about changing meds.  Are you taking Prilosec twice daily?
 
I am sure other members will be along to talk with you.
 
Again welcome to the forum.
 
Kitt
 

Kitt,
Moderator: Osteoarthritis & GERD/Heartburn
Co-Moderator: Anxiety/Panic, & Depression
*~*
http://www.healingwell.com/donate *~*
"When you find peace within yourself, you become the kind of person who can live at peace with others."
Not a mental health professional of any kind


opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 6/21/2009 5:19 PM (GMT -6)   
PaLady -
Glad to see you made over here. I gave you my take on the PPIs on the CP forum, but just to update here. It has been my experience that Prevecid, Aciphex or Nexium work better than Prilosec. I am not sure why, but for me Prilosec was a complete failure. I got the most relief from Nexium, but also had very good results with Prevecid. I have never been on a lower does than 40mg a day. I am currently using Aciphex as a precaution after recent surgery issues and I cannot say for sure if it works as I haven't actu8ally had any heartburn issues for a few months anyway. I do know that the Potonix they gave me by IV at the hospital did make things feel better and since I switched to Aciphex it hasn't gotten any worse. That is my take on PPIs.
I truly understand your fear of the diagnoses of Barretts, especially with the mild dysplasia. Remember though that there are a lot of treatments available for this and the meds themselves could heal things up. It seems to have done that in my case. The surgery may have played a part in that also though. I have to have EGDs every 6 months or so for the first 2 years to see if the Barretts changes any. After that I have to have them yearly to watch it. Did your GI say anything about a schedule to watch for changes?

Take care,
Bill

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/21/2009 5:55 PM (GMT -6)   
Kitt,
Thanks so much for the quick welcome. I do take percocet for pain, and I know that's a codeine derrivative, but I have been taking that since my surgery and while I'm sure all the pain meds combined don't help, I don't think that's the cause. It may help with tipping the scales, though.

I had lost about 25 lbs. back in the 1990's and was eating pretty healthy, had kept the weight off (quit smoking in 1990) but the last couple of years that 20 lbs. has crept back on. Especially since I just went to town on the chocolate every night! So I know chocolate, especially handfuls of M&M's, are out! LOL Don't drink sodas. No longer drink the glass of wine I used to enjoy since taking all these pain meds. Guess I thought the comfort foods, well, I could add those back in as a substitute for all the things I can no longer do. Taking the weight off won't be as easy as I can't exercise as I used to, but changing eating should help some. I'm just trying to figure out if I asked for some nexium samples this week if I would notice a difference before my insurance runs out June 30, and that way I could get a supply of nexium rather than prilosec.

Bill,
Thanks for all your welcoming of me, and for holding my hand over on the CP board. This is all so new. Yes, the GI mentioned a scheduled of repeating the endoscopy (is that an EGD?) in 6 months. He told me to take the 20 mg. of prilosec twice a day, once in AM and once in PM, but that doesn't seemed to have helped at all in the past few days. If anything, I almost feel worse. The heartburn in my chest keeps coming and going all day long, and I've been trying to eat reasonably well, although I have been drinking some coffee.

BTW, I keep reading "caffeine" is a trigger; is it the caffeine or the coffee or tea? I drink sort of half and half coffee (half decaf, half reg.) and I only drink a couple of mugs a day. I would have no problem going to decaf. I also drink iced tea almost year round. Those things would be hard to give up, but giving up the caffeine is fine. I know I've got to work with triggers, and learn what they are. It just feels like this medication should be doing a little more than it is. But I'm kind of clueless.

Thanks!

PaLady

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 6/21/2009 6:16 PM (GMT -6)   
Welcome PA Lady, right away I'll tell you I know nothing about Barrett's but a lot about meds and the information that Kitt and Bill have given you is spot on! Caffeine can be found in both coffee and tea, in some teas, there is actually more than in coffee. Like you I love chocolate, so instead of denying myself of that little pleasure I allowed myself 1 or 2 (but no mare than 2) hersheys kisses a day. It was perfect for satisfying the cravings of chocolate for me and it allowed me to lose the weight I need to lose..and keep (most!) of it off.

Like Bill, Prilosec was a complete failure for me, so to was Nexium, they actually made me worse; Prevacid worked well for me, but because of the other meds I was on I was switched to Protonix. It was my mainstay for several years, so is not a figment of your imagination, the Prilosec could very well be making you feel worse.

I'm sorry that you're going through so much, I hope you'll find your way through this latest challenge. We will help you anyway we can.
Janice

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/21/2009 6:31 PM (GMT -6)   
Janice,
Thank you so much! You really helped me with saying it could be making me feel worse. I really believe it is because since I doubled the dose I feel like the heartburn hardly ever goes away, only for brief periods. I think tomorrow morning I will call my GI's office and speak to the nurse (who is usually more helpful) and ask if they have any nexium samples I can try for this week. If I feel better than I do on the prilosec, then I'll ask for an Rx for that.

These meds are all new to me, so I thank you from the bottom of my heart! If you need a little info about CP meds, well, maybe I can help out there, although I'm not a doc! LOL

Strangely I've never been a huge chocolate fan, but I just sort of slid into it this past year. I will have to find a replacement, although one of the hardest things for me is not eating for a couple of hours before bedtime. Like you, I think in the long run this will force me to get back to some healthier eating, and hopefully lose some of this 20 lbs. I've put on. Hardly any of my clothes fit anymore, so it's a good thing I'm not working much.

I am in the process for applying for SSD for the chronic pain, but I wonder if this will help strengthen my case. Not that I'd want it to.

Thanks again! I'm looking forward to slowly getting to know a few of your over here.

PaLady

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/23/2009 7:10 PM (GMT -6)   
Well, I finally got a call back from my GI's office today. I told them the prilosec seemed to be making things worse. Last night I awoke to regurgitation out of a sound sleep. I know I've got to raise the bed one way or another (it's not quite so easy when you live alone and have back problems). But they're calling in a script for nexium twice/day. How I hate starting yet an even stronger medication. I don't know why this all seems to be happening over a period of just a few months. That is a little scary in itself.

They didn't have any samples of nexium so I'll have to get a 90 day supply and if it doesn't work, then I'll probably be without insurance and will have to pay. My PCP did give me some samples of protonix (sp?), so if the nexium doesn't help, I'll try that.

I can't believe how many pill bottles are on my counter. I used to be so healthy. CP issues were enough to handle, and now this. I know you all understand when it seems like there's one loss after another.

thanks for all your support!

PaLady

LdyJane
Veteran Member


Date Joined Jun 2008
Total Posts : 903
   Posted 6/23/2009 7:32 PM (GMT -6)   
Hi PA, I'm so sorry that you're just starting this journey, but at least you're talking the steps to start. There is another option to putting the bed up on bricks, it may not be as effective but it does work: Most medical supply stores sell sleeping wedges, they're surprising large and they start the incline at your low to mid back and not at your neck like pillows would do.

Our bed would not take kindly to being put up on bricks, that's when my Dr. told me about the wedge. I have to say that it took a bit to get used to, but it did work and worked well, so it is an option for you.

Your insurance should cover a change to Protonix from Nexium even though it is within the 90 day period. Depending on how tight they are, they may require a note from your Dr., but it's worth a try. For my purposes Nexium was just as bad as Prilosec, the Protonix worked very well for me though...everyone is different though, and you'll probably hear from just as many people saying the opposite! How many Protonix did they give you? are there enough of them to give it a good try? Perhaps you want to try the free stuff before going to the new script?

As awful as this sounds, at one time I had 17 different meds (how disgusting is that!) getting the migraines under control helped a ton, but I really cut back after the Nissen; I had so many breathing meds..yikes! Today, I'm down to 6! hooray!!! (how sick is that :)

Janice

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 6/23/2009 7:38 PM (GMT -6)   
PaLady -
I was on Protonix in the hospital and it worked really well for me. My stomach was a mess after the perforation and after 2 doses it felt a lot better. That was IV Protonix and I am sure it works faster and probably is a higher does as well. I did take some after I got home also, but I think my stomach was already healed and I can't say for sure if it helped any. I am sure somebody else here has been using it as well. I did use Nexium after they caused ulcers from too many biopsies in my stomach and it worked great for me. Unfortunately my insurance won't pay for Nexium or Protonix, so I am still using the Aciphex for another 2 weeks.
I have to go back to my regular GI and get my 6 month EGD for Barretts since my surgeon released me today. I am procrastinating and putting off scheduling it, but I guess I should just get it over with. I am just so tired of being stuck, poked, cut, sedated and what ever right now. Oh well, I will just have to get over it and get it done.

Take care,
Bill

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/23/2009 11:37 PM (GMT -6)   
Janice,
Interestingly, I was in a medical supply store today checking out wedges. I didn't like the ones they had - too steep and stiff. I have horrible neck problems, and even one night without a good cervical pillow makes me so stiff I can hardly turn my head. So I am wondering what a wedge is going to do to that plus my lower back. Gosh, do we have to have so many things go wrong with us??

I'm thinking about trying the protonix before I pay for the nexium. I have enough I think for a week or so, but my insurance ends June 30. Tonight I took 2 prilosec instead of just one, since my PCP said it was roughly the same. She actually sugested I try two prilosec in the morning, and one protonix at night. When does it end???

Bill - I sure do understand the reluctance, especially after you spending so much time in the hospital. Sometiems we just need a break from it all. Tonight I kept thinking do I really need these darned pills? I feel so bloated and full of "air" gurglng up and down my chest but I can't get a good burp out! Odd, I've had that problem ever since I had my gall bladder removed. Never could figure out why.

If I end up regurgitating in the middle of the night again, that's it for the prilosec. I just may try the protonix for a couple of days. M

My head is spinning. I'm guessing both of you understand.

PaLady

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 6/24/2009 8:46 AM (GMT -6)   

Hello PaLady,

I have the kind of GERD that acts up when it feels like it.  cool I can go for months without regurg and then if I make the mistake of eating custard ice cream, like in a shake, I will almost always regurg. I have ended up nearly sitting up in bed the rest of the night with 3 pillows to prop me up.

Mostly the caffeine in Diet coke is the culprit in my heartburn.  The Prilosec covers that fairly well.  I did have one ER visit for severe heartburn and recieved IV Protonix which worked well and then I was to take Priolosec twice a day.  I did this for a long time then cut back to once a day when I felt I was doing better.

I continue on one a day but trying to go to a 36 hour dosing schedule.  So slowly perhaps I can come off of one pill.  I have a small arsenal too in the medicine chest. I hope the switch in meds helps you. :-)

If you have chronic pain I sure do understand your need to take your pain medication.  I do not want you to be in pain as that is not a good way to spend any day.

I am so glad you have joined us so stick with us and know you are well supported here.

Hugs
Kitt

 


 

Kitt,
Moderator: Osteoarthritis & GERD/Heartburn
Co-Moderator: Anxiety/Panic, & Depression
*~*
http://www.healingwell.com/donate *~*
"When you find peace within yourself, you become the kind of person who can live at peace with others."
Not a mental health professional of any kind


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/24/2009 11:24 AM (GMT -6)   
Kitt,
Thanks so much! You know, I've been eating those little rice pudding cups with an apple for my evening dessert (3 or more hours before bedtime - which is KILLING me!) and I thought that was healthy! So the pudding is acidic? I guess I have to find a good list of foods.

Geesh. It never, ever ends, doesn it? Although I didn't regurg. last night but I took two prilosec before bedtime, since I wanted to get an idea if the nexium might help.

Thanks!!

PaLady

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 6/24/2009 11:44 PM (GMT -6)   
PaLAdy -
Th whole head elevated and what to eat at night is a trial and error process. I am not very good at obeying these rules. I still love chocolate and orange juice. I just have to remember moderation. I got a call from Dr Movva today and since they did so much in Dec. last year I have to wait until October at the earliest for the follow up EGD. That means another office visit first, go figure. Think I'll do the office visit in Late Sept. or Early Oct. Since I have gotten the whole swallowing mechanism working correctly I can concentrate on the other issuses inside there. Hopefully after everything I have been through this year it will be good.
Take care everyone,
Bill

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/25/2009 12:35 AM (GMT -6)   
Bill,
At least you'll get a bit of a break from procedures and docs, right? Or am I reading this wrong.

With chronic pain, the challenge is always finding a decent pain management doctor and then usually you have to go in monthly - or at least go in to get your scripts. Many of the narcotic medications cannot be refilled, and you must have a written script. Plus there are contracts to sign with pain mangement docs which can include regular or random UA's and a commitment to always use the same pharmacy. It's so complex!

Anyway, if you get a month or two break from the docs, that may be a welcome vacation. I do hope you're healing well - sounds like things are improving.

And thanks for letting me know it's all a trial and error process. I think that this dysplasia stuff has me so scared I feel like I need to fix it ASAP, but that may not be possible. At least I didn't regurg. last night, and today I signed up for a coupon card for nexium. Course my doc's office forgot to call it in.

Take care - and thanks for all your help and support!

PaLady

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 6/25/2009 8:10 AM (GMT -6)   

Good Morning PAlady,

I so understand about wanting a break from going to the physician's office every month.  I finally caught a break and do not have to see my Pdoc until the end of August. 

I have been seeing her monthly as we have been adjusting meds for so long that she always wants to see me each month.  No therapy with her just medications.  She charges $126.00/20 minute appointment................if I did not have insurance I would not be going trust me. 

She would have to make a house call.  LOL

I hope you are able to keep your anxiety level to a low roar.  Try not to anticipate the worse case scenario.  Stay in the moment and remember there is nothing you can do about yesterday and tomorrow will take care of itself so stay focused in the moment you are in.

Gentle Hugs to you
Kitt

 


 

Kitt,
Moderator: Osteoarthritis & GERD/Heartburn
Co-Moderator: Anxiety/Panic, & Depression
*~*
http://www.healingwell.com/donate *~*
"When you find peace within yourself, you become the kind of person who can live at peace with others."
Not a mental health professional of any kind

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