please help me

I'm 36, never had heartburn in my life.  Mom to three young kids.  I feel like I've been stomped on and crushed by this dx.  I'm scared.  I keep crying.  Is this my life?  I'm having asthma with the Gerd.  I was dx last week.  I've never had asthma.  Will I die from this?  Will I want to even if I don't die?  I feel like the quality of my life is ruined and I feel so sad that my kids will have a sick mom until the day I die.  Is a fundoplication any good?  I read horror stories.  I'm not in a good spot.  If anyone can help me.. even if the truth is all bad, I need to get it straight.  I need to know if there's life worth living with this chronic disease. 

Hi 3kids,

I'm sorry you're feeling bad. It can be a scary thing. I was diagnosed 2 years ago with GERD. From what I've read, it may be that the asthma is being caused by the acid going up your esophagus. I'm no doctor, but just the fact that you got the both together makes me think that.

Once I got my esophagus healed up through taking a PPI, it's just a matter of changing my diet. For example, I know that fried foods are a big no-no. My case isn't as severe as some people's though. I went off the PPIs last week and I'm going to try to do all I can not to get a grip on this.

I hope you start to feel better. When it was at its worse, I thought I was dying before I went to see a gastroenterologist and started to get information like through this forum.

Take care!

~Niki

 

Ok.  about 9 days ago, I was having trouble breathing.   I've had pneumonia 5 times maybe 6 and last year I had a problem like this with the breathing, so I went to the er because I couldn't see my reg dr until the next day.  I said this had happened last year and that the er a year ago had had me breathe that misting albuteral and I'd felt fine as soon as I was done.  I figured this er would have me do the same thing.  Instead, I was told I was having a panic attack and heartburn.  I told them I was clearly not panicking, I was nearly falling asleep from lack of oxygen.  - then I mentioned that I was also having some pain in my left lung that felt like pinching and was probably just a mild congestion due to a chest cold.  They didn't change their mind.

The next day I went to my regular dr and he did a peak flow test and said I was 150 points below what would be normal for me.  He said I was having an asthma attack.  That maybe the pollen was high or I'd been cleaning and dust and mold had gotten me and I should take advair for a few weeks plus carry an albuteral inhaler.

I went home and that night, the burning, the absolute fire in my lungs, throat, nausea *which I'd had for several days prior, actually* but passed off as a mild stomach bug because I have three kids in elementary school and they're always bringing bugs home.  Anyway, the pain was overwhelming.  I was writhing and crying.  I called my dr and he said I was having some heartburn.  He saw me again gave me prilosec.  20 mg (over the counter dose) and told me to take it twice a day >>> if I want to.  I don't.  So, I'm taking it once a day in the morning.

Anyway, he said the heartburn is causing the asthma and I can call my heartburn GERD.  I was like, what's that?  And I looked it up and I see that it's chronic.  I went back to see him and he doesn't seem to get that he dx me with a chronic disease and I'm upset.  My symptoms are not under control unless you're supposed to constantly know you have acid in your throat, a constant cough that you can't ignore, a burning tounge, dragon breath, difficulty breathing due to asthma, fear of pneumonia

I'm scared of the burning, the constant reminder that I'm not well.  It's always there.  I don't konw if I take more prilosec if that would be ok and fix all the symptoms.  I don't know if I take all the prilosec for two weeks if the symptoms will DISSAPEAR??  just fix everything?  I feel unhealthy, sick, sad, I can't sleep at night.  I keep waking up with the burning and eating tums. 

I drink only water. 

I eat one gluten free waffle in the morning - plain

I eat a gluten free sandwich for lunch. Nitrate free, all natural deli meat. no mayo

I eat an apple for a snack

I eat rice/chicken, salad for dinner.  No butter, no salad dressing.

That's it.  I sleep propped up to help keep the acid down.

I am about 20 pounds over my ideal weight.

I get moderate exercise with walking daily.

I don't smoke, drink.

I have quit drinking coffee, soda, and eating too much since this happened last week. 

Is the Stretta procedure a good one? 

That or fundoplication?

 

Post Edited (3kidsmom) : 2/11/2006 9:46:35 AM (GMT-7)

I lived in a moldy rental. I had most of the pneumonias repeatedly about three years ago. Sorry for wording that unclearly before. I haven't had a pneumonia in two years. I walk about 3-5 miles a day usually and I feel like my lungs are great. I haven't walked since this started last week. I feel like the advair has me filling my lungs and I no longer feel like I'm breathing in a hot sauna. I'm seeing a GI at the end of the month. My regulare dr who dx me is a D.O. I was seeing him because I thougth he would be less about medicine and more about the human body. But he's a regular pill pusher. I have no other medical conditions besides gluten sensitivity. I do not eat gluten. I had my gall bladder removed a year ago.

So, it's possible to have heartburn all day long, acid in your mouth, burning tounge, tonsils, hear palpitations, asthma ... all the symptoms of GERD and not have GERD? I went three days with no medicine before I relented and took the prescription prilosec. My life was absolute HELL until a few days with the Prilosec in me. I figured the dr was right because the symptoms didn't go away until I went on meds... PLUS, I have the ASTHMA all of a sudden. Never had that in my life. And the choking feeling in my throat. Like I'm being choked with two big hands. Very scary and annoying at the same time.

Are you saying the dr could be wrong? This can happen and NOT be GERD? I'm so hopeful all of a sudden. I pray that's true. I had my priest ask the congregation for prayers for my healing tonight. If I don't have GERD, I'll consider it a prayer answered. Please let me know if I'm hearing you wrong. I felt like this whole thing was NOT normal and believed the dr.

3kidsmom,

First things first: relax. Neither GERD or asthma is typically the end of the world. Chronic does not have to be the same as debilitating. You probably won't be suffering forever the way you are now. You may have been having symptoms for several years now and not noticed them. The irritation to your esophogus, lungs, etc. could have been going on for years. If you can figure out how to minimize the things that cause the acid reflux your body should start to feel better. You may have flareups from time to time, but it really isn't the end of the world. I have GERD and asthma caused by allergies; a family friend is going through chemo/radiation for breast cancer. I wouldn't trade places.

I was diagnosed w/ acid reflux/GERD/a hiatel hernia in early 1999. I didn't feel anything but over time I was having a harder time swallowing things. I finally choked on something and an endoscopy discovered that my esophagus had a severe strictrure due to irritation. The doctor said I had silent acid reflux. I never felt it, but it was probably going on for most of my adult life and doing damage. I've been taking PPIs ever since. I didn't like taking them but agreed to take them because I couldn't tell if there was continued damage since I couldn't feel any pain. I would have an endoscopy every 3 years or so and found that there was a little additional stricture, which was dilated. In 2005 I started having severe pain. Looking back, I now realize I was having a few twinges in my chest for several months before the severe pain started. I never thought about it. I suspect it was caused by a bad diet and a lot of stress caused by a troubled teenage son. For a few months starting in September, 2005, I felt absolutely miserable. I didn't know if I would ever feel good again. Yes, it can be very depressing. But typically it does get better.

You have to discover what works for you. Yes, diet and sleeping with your head up have helped me. Just remember that the damage was probably caused over a prolonged period of time. The healing will take awhile. I've read that PPIs, such as Nexium or Prilosec, can take several weeks to kick in fullly and much longer for things to heal. But the healing can happen. You have to exercise discipline with your diet. I gather you have that discipline since you are on a gluten-free diet. I haven't had a carbonated drink or caffeine in 5 months and I was addicted to diet Coke. I've also cut down on the bad carbs and don't eat 2-3 hours before bedtime. Both chocolate and bread are bad for me. I'm using low carb wraps for my sandwiches. I feel a lot better. I sometimes feel bad if I don't eat as I should but it's nothing like I felt last fall.

One of my bigger challenges is to maintain the new lifestyle when I start to feel better. I then get tempted to eat stuff that isn't good for me. (I'm a recovering chocoholic!) I've discovered that isn't a good idea.

I should mention I also had relatively mild asthma since I was young and that it is typically brought on by allergies. It hasn't given me much trouble in recent years, but when the GERD was really bad last fall I felt short of breath several times. It did go away when I felt better. I have learned that my body can often fight one irritant but can't fight multiple irritants. The mold may be bothering your lungs but most of the time you can fight it. Both mold and gerd are too much and then you have some real problems. I suggest you take a hard look and see what might be bothering your lungs. The fact you had pneumonia several times suggests there is something in your environment that is bothering you. If you live in a moldy apartment, can you move? It would probably help you and the mold can't be good for your kids. Do you have pets? That could be a problem.

I agree you should go to a pulmonologist. You should also go to an allergist -- you never know. More and more adults are getting allergies to different things for the first time. This probably won't affect your GERD but may have an impact on your asthma. Go to a gastroenterologist. If you have insurance, consider having an endoscopy. The doctor can see what is happening in the esophagus, whether you have a hiatel hernia, and if there is an ulcer or other damage to your esophagus such as Barrett's. However, don't consider surgery yet. It's way too soon.

Hope you feel better soon.

mlp

Hi 3kidsmom,
I hope I'm not putting my nose where it shouldn't be......but I'm thinking you are under a ton of stress. I have 2 kids, and it can make me crazy!
There is no reason for you to think that this can't be a temporary condition. I brought up the stress factor, because for me, when I am under a ton of stress (from the kids), I just can't handle much more.........and everything else that happens to me just about pushes me over the edge.
When we're in the middle of alot of pain, it can feel so endless and hopeless.
Just to give a silly example......Awhile back, I had plantar fasciitis in my heels. I could barely walk on them. I had trouble going to work, getting up in the morning, and was in constant pain. I was overwhelmed by the pain, and thought it would last forever. But I did get over it, and haven't had it for years. Same with migraines. I really thought my life was over, with migraines every day for a year and a half.......but I finally found out how to control them, and got my life back.
You have just started your search to control this problem, and it might take a little while. I have the feeling though, that you have so much other stresses in your life, that you're seeing this as permanent and insurmountable.
Yes, you may have to deal with it off and on throughout your life, but not constantly and not necessarily to this extent. And you will learn how to deal with it, before it gets this bad again.
There have been some posts on how bad PPIs are, and I was probably guilty in somewhat agreeing with them. But when I got put on Aciphex, it was like a miracle for me...........No more burning, burping, pressure, nausea, diarrhea, etc., etc. Yes, it might be a little hard to ever come off it, since it can cause rebound heartburn, which can be scary......but it usually subsides within a week.
So please don't be afraid of using a PPI to get this thing under control.
I was on a PPI for about 5-6 years, and I'm fine now. And you'll be okay too.

((((((((((((((((((Hugs))))))))))))))))))) to you 3kidsmom! You have soooooooo much on your plate! How sad, that your husband was so close to coming home.....and now this. Taking care of 3 kids is sooooooooo hard! Do you have anyone around who could help you, or at least give you a day off now and then?
Maybe the virus that your kids has, has made everything feel worse in your throat and lungs and gut.
Did they run a mono test on you? Everything is so much worse, when you're sick! Try to take good care of yourself, and rest as much as possible.
Do you have anything around you like "mom's day out"? Sometimes churches offer that. Can you hire someone to clean your house every few weeks? I'm sure you don't have alot of extra money....but maybe you could treat yourself to a maid once a month.
Yes, I have GERD. When I was going through perimenopause, and on HRT, it was it's worse. I have IBS too. It was an awful time for me.........but hopefully it's behind me now. You've got to stop thinking about this pain as being permanent. You don't need that stress on top of everything else.
Yes, I'm saying I was on PPIs for about 5 years, and now I'm not on anything.
I've had a flare-up recently, but with fibromyalgia, and IBS, that is to be expected. Right now, I just have some nausea and heartburn.....but nothing I can't handle. I think you've got several things going on with you right now, and you're thinking it's all GERD.
I think stress plays a big role in your present symptoms. I would just like to see you get your pain under control. Don't worry how long GERD lasts, or how long you might be on meds. Right now, you just need to get your pain under control. Just take the PPI, and see if it helps. You'll be better able to handle everything else, if you can get this pain under control. And for heaven's sake.....don't worry about how long you might be on a PPI. You can worry about that later, when you get things under control.
Like I said, Aciphex did wonders for me when I was at my worst. Some people don't get alot of relief with one PPI, but do with another.......so don't be afraid to try another one. I didn't get much relief with Prilosec, but I definitely did with Aciphex.
I think you're putting all your stresses and fears into your stomach pain, and it's becoming a monster to you. Keep taking your PPI. See how you feel a couple weeks on that. Of course, try to also avoid caffeine, chocolate, tomato products, etc.
I don't know much about the armed forces, and the services they provide families at home......but is there some organization you could call for a little support??
You need to try some relaxation techniques. Do you take naps when the kids are in school? Can you get out during the day and take a walk? Are you getting sunshine? Are you eating well? Are you taking a multivitamin?
Your incredibly high level of stress could be creating all this reflux. You just can't worry about how long this is going to last. That is just wasted energy, plus it's making the present worse.
Keep taking the PPI, and try to get some support with your kids. Sometimes we all go through hard times, and need to ask others for help. You need to get your stress levels down. What can you do to do that?

Hi krushedspritecan (I like your name!),
I think alot of people think that all PPIs work the same........but like I said earlier, prilosec didn't do anything for me.....but aciphex was great.......so I sure hope most docs understand this, and try different ones on people who aren't getting relief from one of them.

Ok. I feel like the prilosec (20mg) once a day, is working for me. Except that I have a sore throat and a choking feeling in my neck. I don't know if I have a viral infection as well right now that is causing the sore throat??? And if it will possibly clear up in a few days. Other than that, I have a slightly bad taste in my mouth. BUT NO heartburn for two days now. Also, last night, I slept through the night for the first time in two weeks. I didn't need to wake up and eat tums. I did sleep propped up. I feel a slight burning in my lower middle chest towards the evening and a little after I eat a light dinner.

I'm still confused about this. I never had heartburn that I noticed before. I really want to know definitively if this is something that can heal itself? Just disappear? If I'm feeling better, should I continue the two weeks of prilosec, then get off and see if I'm better? How can a D.O. just listen to what my symptoms are and declare I have a chronic disease??? I understand I had the asthma (which is better now that I'm using the advair) and I had the heartburn from Hell, but couldn't it have just been a fluke? Has anyone heard of that? OR am I just wishing too hard and ignoring the fact that bodies do NOT just do THIS kind of thing and turn around and NOT have GERD? I understand this is probably denial? Or is it? I have an appt with a GI on feb 28. I guess he'll schedual an endoscope. My husband has been approved for leave from the end of March till the second week of April. I'm hoping to scedual an endoscope while he's here.

Lyn- I'm grateful for your input... I'm not having panic attacks though. My heart did flutter quite alarmingly in the first few days of this, I was completely freaked out. I thought I was having a panic attack. I had one panic attack three years ago during an isolated, difficult time... (really bad)... anyway, I took xanax for that for two weeks and the panic went away. I then had an allergic reaction to xanax, specifically, the benzodiazapen in xanax, and suffered 4 months of debilitating joint pain. Can you believe it?? Horrifying doesn't describe that experience. However, as a result, I'm afraid of all meds. I was terrified to take the prilosec. I'm terrified to take it for a long stretch of time.

This is why I'm freaking out... too. Does anyone know if the Stretta procedure is good? How about fundoplication? I'm really interested in the Stretta? But if it's worthless, I'd rather not do it. Are the surgical/stretta procedures not hyped because more money is made from people on lifetimes of drugs?

I want to thank everyone for their input. I will tell you honestly, the advice I've gotten here is the best I've gotten during this experience. When there's a post to me, I hang on every word.

Thanks for the positive words. I'm still all about a "procedure" rather than the meds. I am so fortunate that my husband's boss is letting him come home, though. I really need an advocate with the doctors.

I feel like I have a choking lump in my throat. Is that normal for GERD? If GERD is controled, do you still have that lump feeling? It's annoying at best and scary when I start over-thinking my symptoms.

So, no one has an opinion on fundoplication? I understand that you may need meds after 5-10 years, but I really want to get through my kid's childhood without medication. I would love someone's input, opinions, first hand account? I also like the Stretta procedure... at least how it sounds.

I think of things like LASIK and how it just came out and is really a positive improvement in fixing eye problems. I hope something like the Stretta procecdure is like lasik. Any thoughts?

Cathy- you've been very helpful. I'm going to keep thinking of how stress adds to the stomach acid. I am much calmer now that the major pain and breathing difficulty is gone. We have to pay for the flight home for my husband to be here, but it will go a long way in reducing my stress. I am most stressed when my kids are not happy. I felt that being sick was the worst thing that could happen to MY KIDS first and me second. I want to be a healthy mom becuase being healthy makes me feel happy and prepared to be a good mom. I felt bad today when my kids gave me a piece of candy for Valentine's day and I had to decline because I'm afraid to eat the sugar. Am I over reacting? I thought sugar, and chocolate would contribute to the problems? My daughter wanted me to try her Pomegranite Soda I bought her (sounds disgusting, but she just discovered pomagranites, the fruit, and wanted to try the soda).... anyway, I declined to try it because I'm afraid to drink acidic juice and carbonation. I'm a mess. I think if I eat or drink something bad, I'll ruin the rest of the day, or my night's sleep and then ruin the next day. I'm a worrier, I guess.

I agree with Niki..........An operation is permanent, and they don't always turn out the way you'd hoped. They are usually saved for people who have had GERD quite awhile, and haven't been able to control it with meds.
I think, at this point, you would be making a mistake by going with surgery. I would consider the Stetta procedure surgery too.
Yes, the lump in your throat is probably the reflux too. It's also common in anxiety. There's no reason for you to think this is an impossible condition. You WILL get it under control. And don't feel bad declining things like soda and chocolate. I think you are just being wise at this point.
When I had alot of migraines, I learned very quickly that there were some things I just couldn't touch........like chocolate.
Just matter-of-factly explain to your kids that it's really nice of them to share their things with you, but right now, you can't have certain things because they make your tummy hurt. They will understand.
But seriously 4kidsmom......you need to quit thinking this is a life-long illness, and quit thinking about surgery. So many of us have been helped with meds, and changes in diet and lifestyle. Are you working on that stress reduction? Do you know how to meditate? What kinds of things do you enjoy doing, when your kids are at school? Don't underestimate the importance of doing those pleasurable things that will help you.

I am going to persue the stretta procedure as it seems to have no real risks. I don't know why people would choose medication over the stretta. I may not have found what are serious risks with the procedure. Is anyone aware of serious or even minor problems with the stretta? My GERD is under control on one dose a day of Prilosec, but I understand that the body begins to need more, so I'll end up needing two doses then more. Am I right? I say it's under control, but I still have terrible breath, a huge, choking lump in my throat, and mild heartburn after my small, gluten free, low-fat meals. I must sleep propped quite high at night. I feel like the quality of my life revolves around taking my anti GERD meds, asthma meds, being careful about eating, and sleeping. I would rather not do all this.