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    Old 08-31-2011, 04:53 PM   #1
    RosalitaNYC
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    Really Getting Discouraged

    I have been struggling with really bad reflux for the past two years. I was getting a little better then my symptoms got worse and I had to go to the ER two times in one week. I had been taking Nexium 40 mg once a day, carafate before meals, Maalox and/or Pepcid as needed. I went back to my GI specialist last week and he told me to continue with the Nexium but to take 20 mg Pepcid at bedtime every night and to come back and see him in 2 months. Well, he is on vacation until after labor day (it seems everyone but me is on vacation but that's another story). This morning at 4 AM the heartburn woke me up. I guess the meds need to be increased but I can't call him or ask anyone what to do now. I am just so miserable and tired of this. The heartburn really bothered me this afternoon too. I am being so careful about what I eat. The people I work with talk about going to the beach, barbeques, picnics, nightclubs every weekend, and what do I do on the weekend? If I'm not in the ER I'm in church praying for an end to my suffering, or I am in bed reading a book trying to feel better, or I am sitting on the couch alone watching TV. I have no money because I have used up all my sick days and vacation time and didn't get paid for two weeks. I am going to have to leave my apt and look for a room to rent. I have no family near by that I can stay with. This is crazy, my life is going downhill. I was going to a therapist but I don't always feel well enough to keep appointments.
    So here I am. I just don't feel things are getting any better and I am really discouraged. I don't want to be in this pain and discomfort for the rest of my life. How much medication does a person need to not feel this awful pain and does it ever get better? My diet now is really bland and restricted. I went gluten-free, dairy-free and soy-free, in addition to avoiding every thing they tell you to avoid. But still no relief.

     
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    Old 08-31-2011, 08:24 PM   #2
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    Re: Really Getting Discouraged

    Rosalita, I'm so sorry you are going through this.

    It sounds like you are on plenty of acid blockers, which means maybe it's time to look elsewhere for the answer. Did it seem like the Nexium helped when you first started taking it? If so, you may have developed a tolerance to it.

    Have you had an endoscopy? Barium swallow? Any other tests?

    If the medications aren't helping, surgery may be an option. But they need to do some tests first to see if you are a good candidate.

    I had reflux and gastritis that just weren't responding to anything. My GI kept putting me off, but I was insistent, and he eventually referred me to a more specialized GI at a teaching hospital.

    He did what's called a gastric emptying study, and found that my problem is my digestive tract moves too slowly. It's called gastroparesis. The best medications for that are Reglan and Domperidone. Reglan has bad side effects in some people, but you could try it. Domperidone isn't available in the US, but my doctor got me some. It's not as strong as the Reglan, but it's definitely helping.

    For me, giving up dairy, gluten and soy would be a bad idea. I desperately need dairy and grains to cushion my digestive tract. Because my stomach moves slowly, I need to limit fiber-rich foods such as fruits and vegetables, and actually go out of my way to eat white starches, which are an easy source of calories.

    Finally, are you on any other medications at all? For anything?

     
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    RosalitaNYC (09-19-2011)
    Old 09-11-2011, 07:15 AM   #3
    kristen24711
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    Re: Really Getting Discouraged

    I have been getting very discouraged as well sometimes. I started having what they diagnosed as GERD Nov 09 after an accidentally inhaling a tiny piece of garlic at dinner. It was a fairly minor incident as I coughed it out of my windpipe fairly quickly. I never thought that wonderful dinner out with my BF would change my life to come so horribly. I had what I thought was an asthma attack about a half hour after dinner ended and then ended up in the ER 4 times in the next 6 weeks thinking I couldn't breathe. Before this I never had asthma or any other health problems.. I was in relatively good health and never went to the doctor for even a cold.

    I have since had a barium test, a stomach emptying test, an endoscopy, allergy tests, MRI on my lungs, numerous xrays on my throat & chest areas...and my gallbladder removed. When I go to the hospital or Dr I always have good oxygen even when I feel like I can't breathe, EKG is always fine, blood work normal (other than vitamin deficiencies), blood pressure...you name it. Nobody can find anything specifically wrong.

    I have seen several practitioners, a ENT dr, a pulmonologist and a gastroentologist...all saying I have GERD....just can't figure out why or why I keep having the symptoms that I do. I have felt like I am getting better and then I have a relapse. In fact I had an "attack" last night. That's it what I started calling them. Oh and I shouldn't fail to mention that I have anxiety attacks too, I had them mildly before but now they are often as my biggest fear is worrying about medical issues.

    I have told my family (I am 40) that if I have to endure this for 30+ more years or have to live a life of pills and living on a strict diet and not being able to enjoy anything like other people I simply won't make it. It is no way to live. I understand about people having dinners, vacations etc...I don't want to stray to far away from home or Drs that know me.

    I primarily get bad at night but have had plenty of symptoms during the days too.
    Kristen

    Last edited by moderator2; 09-11-2011 at 07:40 AM.

     
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    Old 09-11-2011, 07:11 PM   #4
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    Re: Really Getting Discouraged

    I have suffered with gerd for 20 years. Was taking 2 nexuim and 8 Domperidone (out of Canada) a day. Had all the test, had a shot of botox in my esophagus which help with the opening allowing food to pass through but allow the acid to come up even more. But eventually had the surgery and now I only take one nexuim a day.

     
    Old 09-12-2011, 05:33 AM   #5
    kristen24711
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    Re: Really Getting Discouraged

    I'm pretty sure food is passing through my esophagus....in fact my reflux isn't acidic while on nexium, w/o it is. But I still have the reflux and full feeling. I am amazed at how many people the symptoms present so differently in a lot of people.

     
    Old 09-15-2011, 08:13 PM   #6
    Allanmz1
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    Re: Really Getting Discouraged

    dont worry were here for you we are all going through this if you need help message me ok :} you have a friend

     
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    RosalitaNYC (09-19-2011)
    Old 09-16-2011, 04:48 AM   #7
    JohnnyL
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    Re: Really Getting Discouraged

    Hang in there. This stuff is miserable. Hard to eat and often feels like things get stuck or move slowly. I hate to eat now and used to love it! Have lost some weight and not helping. Just dont even want to eat much. Very depressing. Keep your head up and try some mylanta or gaviscon an hour after each meal. There are some links here that seem helpful but for me , there is no quick solution either. One day at a time !!!

     
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    RosalitaNYC (09-19-2011)
    Old 09-19-2011, 04:40 AM   #8
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    Re: Really Getting Discouraged

    Quote:
    Originally Posted by RosalitaNYC View Post
    I have been struggling with really bad reflux for the past two years. I was getting a little better then my symptoms got worse and I had to go to the ER two times in one week. I had been taking Nexium 40 mg once a day, carafate before meals, Maalox and/or Pepcid as needed. I went back to my GI specialist last week and he told me to continue with the Nexium but to take 20 mg Pepcid at bedtime every night and to come back and see him in 2 months. Well, he is on vacation until after labor day (it seems everyone but me is on vacation but that's another story). This morning at 4 AM the heartburn woke me up. I guess the meds need to be increased but I can't call him or ask anyone what to do now. I am just so miserable and tired of this. The heartburn really bothered me this afternoon too. I am being so careful about what I eat. The people I work with talk about going to the beach, barbeques, picnics, nightclubs every weekend, and what do I do on the weekend? If I'm not in the ER I'm in church praying for an end to my suffering, or I am in bed reading a book trying to feel better, or I am sitting on the couch alone watching TV. I have no money because I have used up all my sick days and vacation time and didn't get paid for two weeks. I am going to have to leave my apt and look for a room to rent. I have no family near by that I can stay with. This is crazy, my life is going downhill. I was going to a therapist but I don't always feel well enough to keep appointments.
    So here I am. I just don't feel things are getting any better and I am really discouraged. I don't want to be in this pain and discomfort for the rest of my life. How much medication does a person need to not feel this awful pain and does it ever get better? My diet now is really bland and restricted. I went gluten-free, dairy-free and soy-free, in addition to avoiding every thing they tell you to avoid. But still no relief.
    So sorry to hear of your desperate but not hopeless situation. Medication, in most cases is never the answer.

    Diet is the answer, but it is not as simple as eat more of x or giving up y.

    Your diet will need to be balanced... low carb and contain many vegetables Steamed not boiled) with some fruit.
    I suggest you research a diet from a Naturopath. Remember this problem has been years in the making and so will take time but if you follow the correct eating plan for life you will gain in every area and banish the problem through you own bodies defences in effect you will heal yourself.
    If you need more help and more specifics please ask.

    My very best regards

    Jeffrey

     
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    RosalitaNYC (09-19-2011)
    Old 09-19-2011, 09:34 AM   #9
    RosalitaNYC
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    Re: Really Getting Discouraged

    Update: First I would like to thank everyone for your responses and concern.
    I went back to the GI dr and told him my story and he said to take 2 Nexium a day instead of one and to increase the Pepcid at bedtime. So far I have been feeling better. I know drugs are not the answer but I really need to heal. Hopefully some time in the future I will be able to decrease the meds.
    My diet at the moment is very conservative. I buy organic fruits and vegetables whenever possible. I have gone back to drinking soymilk with no bad effects but I ate some toast a few days ago and had a major IBS attack (I have that too) so I am going to stay gluten-free. Dairy I have to limit but not completely avoid. I am going to try to eat dinner early and go to bed early every night. Thanks again everyone for your support. This is a lonely dark tunnel to walk alone because people in general do not understand. Glad I found this place.

    Last edited by RosalitaNYC; 09-19-2011 at 09:35 AM.

     
    Old 09-19-2011, 09:38 AM   #10
    RosalitaNYC
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    Re: Really Getting Discouraged

    Jeffrey: I pretty much follow the guidelines you mentioned but would appreciate any book recommendations or any way I can do research on my own. I cannot afford any kind of health professional that my insurance does not cover and they do not cover nutritionist fees unless you have diabetes which I do not have. I have found alternative health practitioners out of my league financially other than a couple of affordable acupuncture clinics. Thanks.

    Last edited by RosalitaNYC; 09-19-2011 at 09:39 AM.

     
    Old 09-19-2011, 09:45 AM   #11
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    Re: Really Getting Discouraged

    The "best" diet is different for everyone, especially if you have digestive problems. For example, in people who tolerate them well, nonfat or lowfat dairy products can be a natural way to soothe heartburn or gastritis. But if you are one of the roughly half of adults who has at least a little trouble tolerating dairy, it probably won't help!

    For the most part, people who have trouble with gluten need to avoid it 100%. People who have trouble with lactose are usually OK with very small quantities of dairy.

    If you overproduce acid, it may be that a diet rich in fruits and veggies is best. For me, I have heartburn due to a "slow stomach." As a result, I need to eat food in small portions and limit fiber.

    See what works for you. Until symptoms improve, avoid all foods that seem at all triggering. But once you start feeling better, experiment. Some foods may be OK in small portions but not in large ones, others you may be better off avoiding entirely.

     
    Old 09-19-2011, 09:56 AM   #12
    JohnnyL
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    Re: Really Getting Discouraged

    I feel you though! Feels like my problems are made worse by google! LOL but serious too! Seems to me my problems get worse when I read about them. I should know better but here I am! HEalthboards as this one seems respectable, people have good solutions and what may work for one and not the other. Nice to know you are not alone though! Keep on hanging in there! If I find something Ill post it as everyone does and hopefully they can help. I agree with keeping things simple! Best of luck!

     
    Old 09-20-2011, 12:32 AM   #13
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    Re: Really Getting Discouraged

    Quote:
    Originally Posted by janewhite1 View Post
    The "best" diet is different for everyone, especially if you have digestive problems. For example, in people who tolerate them well, nonfat or lowfat dairy products can be a natural way to soothe heartburn or gastritis. But if you are one of the roughly half of adults who has at least a little trouble tolerating dairy, it probably won't help!

    For the most part, people who have trouble with gluten need to avoid it 100%. People who have trouble with lactose are usually OK with very small quantities of dairy.

    If you overproduce acid, it may be that a diet rich in fruits and veggies is best. For me, I have heartburn due to a "slow stomach." As a result, I need to eat food in small portions and limit fiber.

    See what works for you. Until symptoms improve, avoid all foods that seem at all triggering. But once you start feeling better, experiment. Some foods may be OK in small portions but not in large ones, others you may be better off avoiding entirely.
    Whilst I agree everyone is different basic human physiology is all the same.

    We as a species need to eat mainly vegetables, followed by fruit (not too much acidic fruit though) a small amount of the right carbs (try spelt flour it rarely causes any problems) a small amount of protein the optimum is 5/10% but that is sever and the right fats (nuts seeds etc).
    I agree that some people do have bad reactions to various fruits veg fats carbs etc but the overall principle is the same. Eat the correct proportion and virtually all illness diminishes/ cure (see Gerson therapy for Cancer and all the other diseases, serious diseases, that it helps /cures). But the cure is ALWAYS THE SAME...

     
    Old 10-03-2011, 08:46 PM   #14
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    Re: Really Getting Discouraged

    KRISTEN I HEAR YA ! i too am going thru this right now -- i have severe acid reflux and to cant take it any more -- some days i just feel like saying God take me i cant do this any more -- hugs)))

     
    Old 10-04-2011, 01:23 AM   #15
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    Re: Really Getting Discouraged

    Hi Sad Girl,

    Don't be discouraged... the cure is out there and its a simple one... but takes a great deal of will power.
    If you are in an acute situation hopefully the pain will drive you to adopt the right path and you will associate going back with the pain.

    I would also speak to a qualified herbalist/ nutritionist because this combination can treat and resolve the problem without side effects or long term damage.

    Good luck


    Jhome

     
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