Help-Need encouragement

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4dad

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Hi,

I've had reflux for several years now. My symptoms are usually mucous production and terrible heartburn. I also have gastritis. I've been on all kinRAB of PPI's before settling on Aciphex which has worked well for a couple of years. I had a bad flare up last year at this time and the doctor did an endoscopy and found a small, 3cm hernia. They kept me on Aciphex and then added Carafate. I took that 4 times a day and my symptoms finally did settle down and I went another year feeling well taking only the Aciphex until last Sunday. I started with a flare up that is unbearable. The pain and burning is so bad I can't take it. It is has been constant, 24x7 with no ease in symptoms. I made an appointment with my doctor on Friday and he asked if I had changed my diet and I told him recently I went on vacation and did not watch my diet. He suggested that if I do eat badly, I need to take extra medication as a preventative measure rather than waiting for the symptoms to show up. This time he added Rantidine 300mg at night until I'm feeling better. I picked that up and took one last night and it did absolutely nothing. A few days ago I tried switching to a Nexium but it didn't do anything different than the Aciphex. I'm watching everything I eat but that isn't helping either! Can anyone give me some encouragement that this will pass? I feel like going to the ER! I remeraber my last flare up being bad but I think I had relief in the evening when all my food was digested. Now this severe burning and chest pain is all the time with no relief. I'm so miserable! Any tips or help would greatly appreciated. I hope it passes because I can't live this way! Thank you!
 
4dad,
My reflux symptoms are different than yours. I get a chronic non-stop cough that aggrevates my asthma and causes breathing problems. I have had a manometry and 24hr pH that confirmed my reflux was getting worse. I've know for years that I have a very weak LES. I think that it creates even more of a challenge in getting the reflux under control.

I also had a Modified Barium Swallow and Esophagram this summer. My docs wanted to see if I had other swallowing issues I might not be aware of that are influencing things. I was feeling great on the day of the test and it still showed constant refluxing. I thought that was really telling.

Have you altered your diet? Are you sleeping on an incline? Have you tried sleeping on your left side? Are you wearing loose clothing around your waist? Are you avoiding frequent bending? If not, those things might help a bit. They won't cure anything, but they may help some. I'll tell you that it is hard to completely avoid the trigger fooRAB all of the time though. When I have a flare-up though, I try to be extremely good with my diet.

I went on PPI's twice a day about 3 1/2 years ago after a bad flare-up that took about 4 months to get under control. That helped me up until this summer. If all else has failed, I would ask your doc about trying this. For me, the Prevacid Solutabs work the best of all PPI's. I also use the Gaviscon as an extra reflux supplement per my GI doc. It helps create a coating in the stomach to ease some of the symptoms temporarily. It is taken as a chewable tablet that actually begins foaming as you chew it. (I'd avoid the strawberry banana flavor though.) I had a great doc that encouraged me to visit her as often as I needed while I was trying to get things under control during that flare-up. She systematically worked me through things until we found something that worked well.

I'm also aggressively treating asthma and allergies in addition to the reflux. When one gets out of whack, the others are flared-up too. For me sometimes, I need to adjust my meRAB to the others to help with the reflux.

Unfortunately, after 6 years of having reflux, mine took a turn for the worse and none of the PPI's were keeping it under control enough to get my breathing under control. I ended up with surgery last month. It was an absolute last resort though.

Keep up with your treatment. Give the meRAB time to work. Like I said before, my GI doc made me give it at least a month to see if they would work or not. I know it can be tough during that time, but when things are bad, I try to think about the end results of everything I am trying.
 
When I had my first symptoms of heartburn last year, they came out of nowhere and with a vengeance. I had never had heartburn in my life and all of a sudden one evening the burning started and it was intense and constant. It felt like I could breathe fire if I opened my mouth. I also had lots of burping. This went on for my 24/7 for about 3 months. I'm not kidding. First, I thought it would go away by itself. Then after a few weeks, I went to my GP and she put me on Prilosec, which helped very little. I went back after that prescription ran out and was switched to the stronger Nexium. After about 4 weeks on it, I started to notice a difference. Eventually my intense GERD symptoms subsided, but I'm still dealing with chronic throat issues to this day -- more LPR symptoms than GERD symptoms now. I do find my particular LPR symptoms easier to deal with than the GERD symptoms, which were intense. Maybe you should try the Nexium longer than a few days. It can take weeks to feel the full effect of the medication.
Hope you find some relief soon.
Kassie
 
MountainReader,

Thank you for your post. Right now I'm still taking Aciphex since I wrote last because I'm afraid to switch back to Nexium. I've done switching in the past and have had it the GERD get out of control so while I want to give Nexium another try I'm scared to. I still have the burn almost constantly but it is not as severe as the beginning of last week. That is why I hesitate. I think the calming may be because I've watched my diet very carefully and have eaten much less. My chest burns almost constantly though and I get pain somtimes that is sharp on the right which is from the spasms I guess. When I went on the Nexium last week (Wed) I improved for 2 days and then the 3rd day it seemed worse and I thought I was actually refluxing a bit more. I hardly cough while on Aciphex. I have tried all the PPI's by the way and I was on Prevacid Solutab for one year or so which worked great until tha tone stopped working. That is when I switched to Aciphex which has worked the longest. Now I burn all day and I agonize every morning about whether or not to try Nexium. When I visited my doctor, he said to add the Zantac 300 at night. He thought using Nexium was okay but when he took me to the sample closet he was out of it and asked if I wanted to continue with Aciphex. I said that is what I'm on now! He knows that but doesn't think Achipex is not working but that instead my body is just overproducing acid right now. He also suggested instead taking Zantac twice a day for 5 weeks and then switching back to Aciphex. The problem with that is I don't like taking Zantac because it seems to give me light sleep at night. I just don't feel rereshed when I take it. It helps some through the night but doesn't take it completely away. The doctor mentioned the next thing would be to try a low does of an antidepressent which I always say no to.

I wonder if something has changed inside like maybe my hernia is bigger than 3cm. This all came on so suddenly. I lifted an extremely heavy garbage bag a week or so before this came one by just lifting it without bending foward or down. I told my doctor but he doubted I had done anything to make the hernia worse.

I have tried Gaviscon (thank you for recommending it) and I think it is the best one for helping out of all the antaciRAB. It is short lived though just like the rest and I hate the taste!

So here I sit uncomfortable but trying to live my life as normal as possible while caring for 2 kiRAB. It is not easy and I cry a lot about it. My husband feels helpless. Right now if you have any insight as to what PPI to try that would help. I know you can't provide the answer because you are not me but based on what I've said do you think you'd try Nexium or continue on as is to see if it calms down on its own. I'm heading on 2 weeks since this all started.

Thanks for your support! I hope your surgery was successful for you. This is an awful problem.


Thank you!!!
 
Fluflapper,

You made me laugh! I have exactly what you are describing. I go through this each year about this time. This time I'm worried it will not ease up! I am doing the best I can with diet. Bland works the best for me. I have to try and be very careful. The minute I feel a little better I eat the wrong food and it sets it right off. I get the awful burning, lose my voice when it is extremely bad and have the pain in the chest. I have had vitamin C set mine off but within only a couple of days of stopping it I was better. Last year I had this it took a few weeks to get over it. I'm starting to wonder if the Miralax I take nightly is contributing to this problem? I began taking it daily about a month ago for constipation and it works wonders. I didn't take it last night because I'm wondering if it is causing the flare up. Today I don't notice an improvement! :( If anyone knows if this can cause chronic heartburn let me know!

Thank you for the encouragement. I'll hang in there! It is hard not to sit here and think about what all this acid is doing to my esophagus! This doesn't help at all I know!
 
4dad,
It is interesting that this is seasonal. Do you have any allergies? Sinus problems? I seem to have problems with sinus infections every fall. I'm almost always on antibiotics in Noveraber. When my problems hit, I get some bad PND. This usually also triggers a reflux flare as well. Seems like a vicious cycle allergies/PND/reflux/asthma. When one gets out of whack, it often triggers at least one of the others to flare up. I think the really dry winter air also has something to do with it. If there is a possibility of allergies, you might try treating both to try to get things back under control.

My pH test 3 years ago was really bad. My pH test this summer was worse since the results showed I have extremely severe reflux. (I was having a good reflux day on the day of the test too.) My EGD showed absolutely no damage to esophagus or stomach both times though. I don't know if it reassures you or not, but the reflux doesn't always mean damage to the esophagus.
 
4dad,
I'm sorry to hear you are still feeling so bad.

I had a bad flare-up that lasted from June through Septeraber of this year. Previous to that I had been on Prevacid Solutabs for about 3 years. They had helped keep things in check for a long time. Beginning in June, my GI doc switched me to Nexium. As I said before, he made me stay on it for a month. He said the PPI's are different for everyone and that we needed to keep trying until we found one that worked for me. He said the Nexium is actually the best of the bunch. For me though, Nexium was horrible. I was really sick the entire month. On top of a non-stop chronic cough and related asthma attacks, I had reflux symptoms I had never had before, including intense nausea and heartburn. I went on Aciphex for July and Zegrid for August. Zegrid helped a bit, but not better than the Prevacid and it isn't covered by my insurance. (I had previously tried Prilosec and Protonix with no luck. The Protonix worked well enough when I first had reflux diagnosed, but stopped working about 3 years ago.) After going the rounRAB with all of the PPI's, my GI doc just told me to "pick one" that helped the most even though none of them were keeping things under control. I went back to the Prevacid that I was on when the flare-up started.

I should say that I was on a double dose of Prevacid for years. I take one in the am and one before dinner. I started on the Nexium once a day and increased to twice a day after a week. Going on the Prevacid twice a day got an extremely bad flare-up back under control and really helped for years, until it just stopped.

I guess what I learned from this was to be patient, no matter how I felt, and try to give the medicine time to work before deciding to give up on it.

Did the Prilosec work for you at all? If so, you might ask about Zegrid. It has the same active medicine with an additional medicine to protect the stomach and facilitate the effictiveness of the active medication. Have you tried taking any of the PPI's twice a day?

I agree the Gaviscon tastes bad. When things were really bad, I was regularly chewing 4 at a time just to get them down faster. Even temporary relief is something.

Are you sleeping on an incline? If you continue with the Zantac and have trouble sleeping, you might give it a try. At least 6 inches is supposed to be most effective. That is what I have used for years. It takes some getting used to, but you can adapt. I just used some bed risers I got at a local bed and bath store.

The manometry (proved loose LES) and pH tests (proved bad constant reflux)were the final used to prove to insurance that I needed the surgery, but the Modified Barium Swallow and Esophagram were most useful to me personally. They showed me that even when I was feeling well, I constantly had food and acid refluxing up into my esophagus when I was eating or drinking. At times the acid was heading up to my lungs. I realized then how little my LES was functioning. I haven't found anything that shows that PPI's can cure that. They just help reduce the acid and damage the acid does. Ironically, my EGD was clean both times I had it done. It took my Pulmonologist sending me for the barium tests and recommending surgery to get my GI doc to act more. Sometimes help comes from odd places.

It has been 6 weeks today since I had surgery. So far, I have had no asthma attacks or coughing that were my primary reflux symptoms. I have had some other digestive issues that I have been having though. I'm still on the Prevacid twice a day though. My doc wants me to stay on it. My surgeon told me that I wouldn't need it. I figured I would give my stomach a couple months to heal up before talking to him again. I go in for another follow-up mid Deceraber.

Keep us posted on how you are doing. I know from experience that the constant refluxing can really wear a person down. Take care.

MR
 
You all sounRAB alot like me. Can you help me get mine figured out? I have allergies year round. Sept through Nov. is horrific for me. On the 3rd round of antibotics since Sept. 2 colRAB and 2 sinus infections and a nagging cough. I feel like I am congested with goop in my throat and can't get a full breath. I have had reflux before and felt panicky. Is some of this reflux possibly?? Like this nervous dry yes goopy cough. It's making my throat swell and gives me a raspy voice. I am so weary tonight. And depression is setting in on this cold dark night dealing with all this. Thanks!
 
I've had reflux for years. This past summer, my reflux meRAB stopped working. Working with my GI doc, I tried some of the others that were available. He had me stay on each one for a month before trying the next to ensure that we had given it enough time to really take effect. It was really frustrating at times, but my GI doc talked me through the steps he was working me though to try to find something that works.

Have you tried supplementing with Gaviscon? That is what my GI doc recommended from OTC in addition to the prescriptions.
 
Mountain Reader,
I don't have allergies thankfully but very good thinking. I was tested for them but I am suspicous about dry weather. I do drink a lot normally but before the flare started I wasn't as diligent. Thank you for saying that the acid may not do damage to the esophagus. My first EGD in 2005 showed small ulcers and erosive esophagitis. My dad had cancer and was dying so I was under a lot of stress. It eventually got better with Zantac and then I changed to Aciphex. I had another EGD two years later in 07 because I had such a severe flare for no reason at all. My husband and the doctor however blamed stress. It was at this time last year. That EGD at showed no ulcers but instead a 3cm hiatal hernia. The doctor said my esophagus looked better than last time. So he kept me on Aciphex and added Carafate. It did finally get better. I never believed it would! Now I'm in the same boat as back then except I do feel the problem is worse because I'm getting severe heartburn constantly. I notice if I eat strictly bland things I can tolerate the burn because it is less intense. Another thing I've noticed is I don't reflux like I used to. I do wake up with that bitter taste in my mouth and might cough up a small amount of mucous once or so which confuses me totally! You would think I'd have that with all this heartburn. I just don't get it. So I hope regardless of the burn things are okay with my esophagus. My doctor said he didn't think I needed another endoscopy right now. I have not changed anything since I left his office last week! I was taking the carafate but this time it seemed to irritate me more. I'm experiencing some burning too when I drink fluiRAB which is scaring me a little.

The part about you not having symptoms yet showing a high amount of acid intrigued me. Very interesting. Thanks for sharing!

I was just wondering if you were able to sleep well while taking Zantac. I think you mentioned you had taken that at one time. Thanks!
Lori
 
Hi, you are talking to someone who has had GERD for 3 years now, and from my experience it does not get much better. Try cutting down the carbs, see if that helps. NO more than 27 grams of carbs per day. I read somewhere that people have been cured of GERD going on a low carb diet. But the problem with me is I have a faulty LES, so now matter what I eat, carbs or not I get terrible acid reflux. HOpe you feel better, I can empathize with you.
 
Hi,

Thank you all for responding! I have gone back to Aciphex now taking one today. I can't take 2 different PPI's at once can I? I don't want to mess up things even worse. I've done this before changing back and forth within a few days and I seem to remeraber it being worse for a awhile.

I heard about the reduction of carbs. I think I tired that once and it didn't seem to help but I have to admit I'm not good at sticking with things very long! The doctor told me I have the hernia and a weak LES too. What I don't understand is why the flare up? All has been under control and then it gets out of control. So strange.

Elisa123 and MountainReader, do you feel yours is under control again? I feel for you too. I've had this since 2004 but diagnosed by EGD in 2005. It really stinks. My doctor said my problem is not bad enough for surgery. I just hope they come up with something better soon.

Kassie29, I'm glad yours improved. It does take a long time sometimes to get a flare under control. I tend to forget that. Thanks so much to all for the worRAB. It has helped me today.

Lori
 
Thank you Mountain Reader. I've decided to stick with Aciphex because I really think nothing is going to touch this problem right now because it is in such a flare. I have tried taking two of a few PPI's in the past and it didn't do a thing but I probably didn't wait long enough. My doctor is not an advocate of it at all and would rather I take the Zantac at night. I admit to not taking the Zantac at night because I think I've convinced myself it keeps me from sleeping well. I think this is just a phscyological problem though! My doctor said he never heard of this. So if I would take it consistently I think I would feel better. I'd rather try and fight it with diet, etc. first. When I eat completely bland and little amounts I do better. The burning is there but not as severe. I can't imagine what on earth has changed all of a sudden! I do sleep elevated by the way. I put a blanket under my mattress which puts me on an incline.

I had the PH monitoring study a few years ago and it showed moderate GERD and a weak LES. I hope I never have to go through that test again.

So I'm 2 weeks into this now and still not feeling like I did before this all began. I hope it truly will subside soon. I don't have coughing like you do or ashtma thank the Lord but I do have the severe burning in my chest and if it gets real bad my esophagus starts to hurt a lot.

You made me laugh about taking all the Gaviscon tablets at once. :)

Thanks again for all your help. I'm glad so far your surgery has helped your breathing issues.
 
Oh my goodness! I wish I could help you with this one. I do not have allergies nor have I experienced the sensation of not being able to breath. I can however relate to the misery of not feeling well 24x7. All I can say is usually there is some kind of solution and end in sight. It will get better. Have you tried medications to help with reflux? It is very cold here too and very depressing!
 
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