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heartburn/GERD


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#1 Chopper

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Posted 02 August 2011 - 12:59 PM

So once in awhile I experiment to see how I deal without erythromycin to help my stomach contract, and I've done well for the last few days as long as I eat the right foods. Yesterday I thought I'd try going without omeprazole and see how I did. Well, 1 1/2 days later here I am with heartburn. Guess I still need it. I've read that it wasn't intended to be a long-term medicine and that it's the most overprescribed medicine today, which is why I've tried a couple times to not use it.

Since many or even most with scleroderma have issues with GERD, do many of you find that you NEED to be on a proton pump inhibitor? Is this a long-term solution? Have you tried going without? Or have diet changes made medicine unnecessary?

Thanks,
Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#2 Joelf

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Posted 02 August 2011 - 01:49 PM

Hi Chopper,

I'm actually one of the few fortunate members in that (so far! wink.gif ) I haven't had the gut involvement with Scleroderma so thankfully haven't had to resort to taking omeprazole at this stage.

I have a friend who certainly improved her gut problems by not eating too much fibre, limiting her intake of vegetables and (sadly!) not eating chocolate. However, I do think that you should consult your Scleroderma specialist before discontinuing any medication; perhaps you could discuss any worries you have about the long term use of the proton pump inhibitor with him?

I know some of our members have had Nissen Fundoplication surgery to improve the condition and I think it was quite successful for most of them. Here's a few more GERD Prevention and Treatments and Lifestyle Changes which I hope will give you some information.

I'm sure some our other members will be along with some first hand information to help you.


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#3 Chopper

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Posted 02 August 2011 - 02:46 PM

Jo, you're right. I should ask the doctor about that. I'll take the omeprazole until my next appointment. I just wanted to see what would happen. And I'm also curious about others' experiences with it too.

At this point I'm already on a gluten free, low fat, low fiber, dairy free diet. Sometimes I think it there's not much left to cut! Even though I ate some low fat meatballs and potato salad for lunch, maybe it was still too much fat.

Thanks!
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#4 Jeannie McClelland

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Posted 02 August 2011 - 04:00 PM

Hi Chopper,

I see a GI who is a specialist in autoimmune motility issues. We had the discussion about proton pump inhibitors last year and he said that the current thinking is that if you are getting enough calcium and Vit. D & K, it is OK to stay on them long term. The concern is that they would contribute to osteoporosis, but between drugs for that and watching/supplementing the calcium, it pretty much becomes a nil sum game.

Did you know that you have a rebound effect when you discontinue the proton pump inhibitors? To check my reflux last year (because I am still getting some esophageal erosions and coughing), they did a' bravo' test - a little wireless probe that is implanted and reports for 48 hours. I had to be off the proton pump inhibitors for a minimum of 4 days before the test and not take any antacids either.

I had a fundoplication. Medication didn't help enough with the GERD and modifying my diet, times of meals, sleeping upright, and so on and on didn't make enough of a difference. Because I already had lung fibrosis, the doctors were in agreement that we needed to do more. I must say it has been great.

Best wishes,
Jeannie McClelland
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#5 judyt

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Posted 02 August 2011 - 08:03 PM

Hi Chopper and Jeannie,

I include Jeannie because you probably know a lot more than me about these things, but the way I see the GERD problem and Omeprazole is that the reflux is always there it is just that while you are taking the inhibitor it is not acidic so it doesn't burn.

Perhaps I am totally wrong but why I think that is because once, a year or two ago, I had a fancy CT (I say fancy because it was more involved than usual) and in the report the level of reflux was noted. It was something like 3rd vertebral level, I can't really remember exactly and I can't find the report at the moment, and I know that during the test I was not aware of any reflux at all and I never am really.

I assume that the level of reflux, if it is not acidic, is not a concern if it is not being aspirated and therefore getting into your lungs.

I do know that my 'wise' husband ignored reflux for many years - he knew better than me that there was nothing to be done about it!! Now he has Barrett's Oesophagus and takes Omeprazole just like me!!!

I wouldn't like to do without it, even though I do have some Osteoporosis.

Best wishes,

Judy T

#6 Jeannie McClelland

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Posted 03 August 2011 - 09:01 AM

Hi Judy and Chopper,

You are right, Judy. What the proton pump inhibitors do is to inhibit the production of gastric acid by blocking an enzyme that causes the release of positive hydrogen atoms by certain cells in the stomach. The hydrogen is necessary to form an acid and the chemical formula for hydrochloric acid is HCl. I could go on and on about the role of acids in digestion but I won't. I haven't had breakfast yet and I'd really rather not think about it!

(Wow, I hope my old teachers see this and know their efforts weren't in vain! :lol: )

Warm hugs,
Jeannie McClelland
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#7 janey

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Posted 04 August 2011 - 09:35 AM

Jeannie - Your teachers did good!!! :VeryHappy:

Chopper - I'm going to ditto everything that has already been said! I've been on PPIs since 2003 and have been informed by both my GI doctor and rheumatologist that I will most likely be on them the rest of my life. The PPIs work great with heartburn as long I take them within 15 hours of each other. After 15 hours without a PPI, my stomach starts to burn - so needless to say - I don't forget.

As Jeannie mentioned, the reflux possibility is always there. For me I have to be careful because, like so many of us, I have a hiatal hernia and the valve to the stomach has partially stiffened due to fibrosis that my stomach is somewhat exposed to the esophagus. So I am very careful with my diet, not overeating, and not eating at least 3 hours before going to bed. I sleep with a wedge and 4 pillows, so reflux isn't a problem.

Wish there were better news! I know how much we all want to just stop taking medications, but...many of us wouldn't be here today without them.


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#8 Chopper

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Posted 04 August 2011 - 12:30 PM

Thank you, Ladies, for the information! I looked up those links - didn't know they were there! That was very interesting. Glad you got to exercise your brain, Jeannie!

Judy, your husband's story sounds familiar - why do men think they have to wait until they can't bear it anymore! My husband recently got Lyme disease and he tries to ignore the flares until he can't stand it.

Janey, thanks for sharing. I haven't progressed to that point yet. At times I wake up with gas pains in my stomach from slow digestion and I have to walk around to burp for relief, but I'm able to lie back down flat. I'm glad to hear there's generally relief in some way or form, even if it is a long term med.

Chopper
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.