What to do when nothing works?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

dany1982
Regular Member


Date Joined Jan 2012
Total Posts : 158
   Posted 8/2/2012 9:53 AM (GMT -6)   

So, I have been reading this board since December of last year. Everything started after one big dose of ibuprofen before sleep.  I had all the tests, blood work, ct scans, ultrasound, barium test (negative for reflux), endoscopy showed only gastritis and mild esophagitis. I got some side effects from the ppis, I stopped them for a while and I was ok just on Carafate. Then I tried all the natural remedies that I was reading online which only made it worse. The HCL and enzymes wore the worst, everything is unmanageable after those. I took them for two months, thinking that the mild burning that I would get after them was a good thing, since I never got the intense burning that everybody was talking about, until one day when I woke up on fire and now I can not get my stomach and esophagus to stop burning, since I stopped them in February. Now I can not take any supplements or vitamins, everything burns very bad.

I can not believe how much damage they did and that I can not recover after so many months on double dose of PPIs, carafate and zantac.


aeshleyrose
Veteran Member


Date Joined Jul 2011
Total Posts : 656
   Posted 8/2/2012 2:23 PM (GMT -6)   
Hi Dany,

It is really difficult when it seems like nothing works. What I would suggest for you - and forgive me if you've already done this - is go hardcore with the lifestyle changes and try to heal your stomach and esophagus. If there was indeed an injury, you need to do everything that you can to help your stomach heal. I would avoid all trigger foods - tomatoes, chocolate, alcohol, etc - and keep taking your pills until your doctor tells you to stop. Making the lifestyle changes is undoubtedly hard, but it is far from impossible.

After a year of suffering, I have deduced that I may have had some type of injury to my esophagus and that it healed a while ago, but the extended PPI use then began working against me and created more symptoms than it was curing. Now, I don't tell you this to encourage you to follow my plan, I only tell you because everyone is different and maybe what I did might work for you. However, I strongly urge you to consult with your doctor and tell him everything that's been happening. He can help you make a more detailed action plan as far as medication goes.

I am very sorry that you're suffering. It is really horrible to feel badly and have no idea why. I didn't know why until I stopped my PPI and looked back over the past year, and even that's still just an educated guess.

Take care,
Ashley

dany1982
Regular Member


Date Joined Jan 2012
Total Posts : 158
   Posted 8/2/2012 4:45 PM (GMT -6)   
Ashley thank you for taking the time to answer me. I am on a strict diet since December of last year, Broiled or backed chicken, potatoes, carrots, avocados, eggs, bread, some crackers, rice, bananas and sometimes a leaf of lettuce or some other fresh fruit. Yogurt, fish, honey, fresh fruit and veggies, milk and cheese give me horrible heartburn. But I try to eat them from time to time, just to get some calcium and vitamins. I lost 27 pounds, I'm now 98 pounds. All doctors do is give me ppis. I'm also doing some hormonal treatment for my endometriosis and I think that it's making my heartburn worse, every time that I take some hormones, even if they are not taken orally I'm on fire.
Anyways, I just wanted to know if there was anybody else there that had it this bad and that recovered. I was just looking for some hope.

sunbeam48
Veteran Member


Date Joined Jun 2011
Total Posts : 795
   Posted 8/2/2012 7:25 PM (GMT -6)   
Dietary-wise, someone suggested eating just rice for a few days, then add one new food every couple of days. You might discover some new foods that don't bother you.

WJF
Regular Member


Date Joined Sep 2011
Total Posts : 273
   Posted 8/4/2012 8:30 AM (GMT -6)   
dany1982,

I have a feeling that too many information might have confused you.
When you read about natural remedies on the internet, always be skeptical and look for more information and check the conversations of those who took them.

HCL is a big no no to GERD patients. I am not sure who suggested it to you? HCL stands for hydrochloric acid which is just the stomach acid that burns your stomach and esophagus. It is a supplement for people with hypochlorhydria - lack of stomach acid.

Do let us know what natural remedies you have taken, let us sort it out for you. I am sure every veteran member here has tons of experience with natural remedies. And when you try something new, try not to take too many things at the same time, that will confuse you as to which one is working, which one is not.

As for diet, be careful with avocados (they are rich in fat, which slows down digestion), try to avoid crackers too, because they may have sharp edges that scratch your esophagus. Rice may be tolerable to some, or may cause heartburn to some. Flour-based carbs are safer.

If you are underweight, try taking Ensure Life or any medical nutritional product. They are made to be rapidly absorbed, so they are less likely to cause heartburn, and will help you gain weight.

Are you able to sleep well at night? A restful sleep is critical to heal your gut from inflammation.

jpvn2015
Regular Member


Date Joined Jul 2012
Total Posts : 63
   Posted 8/4/2012 8:49 AM (GMT -6)   
Dany1982, I know that it is very difficult when nothing seems to work. Lots of Gerders feel this way, and it usually the support of others that carries them through. Nothing can cure your problems better than a big dose of love and care. ;)

Anyway, I would personally suggest going on a strict diet. I am aware that you are currently trying this, but maybe it is the things that you are eliminating that is causing the problems. Have you tried no dairy? Have you tried eating at least three hours before bedtime? It's the little things that can make a difference - even if it doesn't seem like it.

Also, HCL is something you shouldn't be using. It is supposed to help those with hypochlorhydria, not those who suffer with too much stomach acid.

I would try to eat lots of strawberries and blueberries. Both of those seemed to help me a lot, and I know a lot of people who have been helped by eating those foods.

dany1982
Regular Member


Date Joined Jan 2012
Total Posts : 158
   Posted 8/4/2012 9:47 AM (GMT -6)   
I guess I should have done more research when I tried the HCL and enzymes, but everything I read was about people that cured their gerd with it and apple cider vinegar, which burned also very bad. I guess it took its time to burn my stomach very good, since at first I was feeling just a slight burn, and that is why I did not stop, I thought that it was helping.

I was afraid to take the ppis since I got some side effects from them and I was hopping that the natural remedies will help. Here is what I tried and all gave me heartburn, I guess my stomach was burned from the HCL
manuka honey, probiotics, DGL licorice, l-glutamite, slippery elm, marshmallow, metamucil, sea-buckthorn, colostrum,vitamin b, fish oil, turmeric, zinc carnosine ( this one upset my stomach very bad and I could feel the metallic zinc taste in my mouth, the reflux was unstoppable after this one, it came up to my mouth).

I feel like I have a pharmacy at home now. I tried juicing cabbage, broccoli, carrots, potatoes, apples, but these gave me very bad heartburn also. Also when I was having trouble sleeping from the pain I would take ambien, and then when I would wake up in the morning and my esophagus and stomach would be on fire, so I had to stop that and deal with the sleepless nights, since sleeping teas and supplements give me heartburn too. I'm definitely not eating after 7-8 pm and go to sleep at 10-11 pm. I tried to go with no breads or wheat, but for some reason i feel like wheat its actually helping so I went back on it. I tried no dairy, as I'm getting heartburn from It, but I need some calcium and I'm having some yogurt and milk once in a while. I can not take any vitamins, since it seems like now they give me heartburn. Also I tried ensures and power bars, but I guess all the chemicals that they have upset my stomach and give me heartburn. I'm still having them once in a while, for the calories.

Oh well, I learned my lesson and I will be very careful now with the natural remedies, I just wanted to know if there is someone else who had this bad experience with them and if they recovered.
thank you so much for taking the time to help me cope with this horrible disease

dany1982
Regular Member


Date Joined Jan 2012
Total Posts : 158
   Posted 8/4/2012 10:27 AM (GMT -6)   
I also tried aloe vera juice, gel and the leaf, mastic gum, Amptriptiline and xanax, to no help

jpvn2015
Regular Member


Date Joined Jul 2012
Total Posts : 63
   Posted 8/4/2012 11:55 AM (GMT -6)   
Yeah, Zolpidem is not a good idea to take when you are struggling with any sort of inflammation. I'm pretty sure that's why you were waking up with a fire pain in your stomach. Been there, done that.

Good luck with your disease, Dany1982. A lot of us suffer from it, so you're not alone.
The advice I provide and present to you is solely based on research and doctor diagnosis. I am personally not a doctor. Going to a doctor is far better than listening to what I have to say.

I have experienced a lot over the course of years, and I am glad to give you some pointers to help you overcome your struggles.

mudmagnetmum
Veteran Member


Date Joined Apr 2011
Total Posts : 1604
   Posted 8/4/2012 2:56 PM (GMT -6)   
Dany, have you got the head of the bed raised?

I bet the hormones are throwing everything out of whack at the moment. It's very disheartening when you have a prolonged flare up - I've just surfaced from one now. I always fall into the same trap when things are bad, by returning to the medics, who insist on repeating gastroscopy (which is a massive massive stress for me) which escalates my symptoms out of fear of the test and fear of the results.

I would say persevere with lots of different approaches, taking one at a time and keeping a diary of your symptoms and whichever intervention you are trying. One person's failure may be the next person's miracle fix. I was previously trained in nutritional therapy and am very dispirited by how resistant GERD can be to natural treatment. I find licorice helps (DGL) and marshmallow, but everything else makes my gastritis worse. Gaviscon helps for breakthrough symptoms. Having no tea, coffee or alcohol helps too, but just makes life miserable. I think perhaps one of the reasons natural remedies don't always have any impact is because it can be a largely structural issue (and in my case with gastritis thrown on top). It's worth seeing how much of your problem is structural (hernia) by asking to be assessed by a surgeon - and if PPIs don't give you symptom relief then that is the next correct step medically.

One last thought - you say milk and cheese give you heartburn. That may be just a feature of your GERD, but it may also be worth trying a dairy free diet in case you have a hidden allergy or intolerance driving your symptoms. If being dairy free helps then you could try lactose reduced milk to differentiate between lactose intolerance and milk allergy. Worth a thought. Hope some solutions come your way very soon,

MMM
New stuff: GERD, Recurrent cystitis/Overactive bladder
Lifelong stuff: Food allergies/intolerance, eczema, asthma

dany1982
Regular Member


Date Joined Jan 2012
Total Posts : 158
   Posted 8/4/2012 3:19 PM (GMT -6)   
I sleep on a wedge pillow, with two more on top of it, to make it more comfortable, I can not lay down as i feel like suffocating and my esophagus gets tight and start coughing. I'll try again to be more strict with my diet, and eliminate again all dairy (lactose free milk still gives me heartburn). If it gets worse, I'll definitely look into surgery, I need to be able to work in order to have insurance. I'm just so frustrated because a few years ago it was not this bad and it went away after 3 months on ppis, and now I feel like is 100 times worse then before due to my stupid mistake of trying different stuff that messed my stomach also and not taking my pills , I could have avoided all this suffering. I'm so frustrated. I just hope people will learn from my mistake and use HCL supplements with caution.
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, June 24, 2018 10:28 PM (GMT -6)
There are a total of 2,974,887 posts in 326,219 threads.
View Active Threads


Who's Online
This forum has 161310 registered members. Please welcome our newest member, ejt998.
365 Guest(s), 2 Registered Member(s) are currently online.  Details
quincy, GaryFitz2