Out of Options - Just want a Listening Ear

Digestive health
1

Hello.

I'm just extremely tired of my chronic illness with seemingly no escape from the horrible reality that is my life at this point. Heck, it just feels like waiting for death at this point. But before I get too much into detail, I have to say that this will be rather long and I really just want to tell my story to anyone who might be able to relate.

I'm 20 years old male. No particular family history aside from late life hypertension and diabetes. No one had anything particularly wrong with them in my family, except me. I was a healthy young lad until I got out of high school, when I had chest pain and was thusly diagnosed with GERD. I took antibiotics and PPIs and my health went downhill since then.

It's been 3 years since that original diagnosis. My health slowly went down the gutter as time went on. 

Daily Belching

Fast heart rate that seems to drop instead of rise when standing up for example

Shortness of Breath(generally getting more and more constant)

Bloating

Abdominal Pain

Chest pain and pressure

Weight Loss

Coldness

Poor Blood Circulation

Excessive Gas

I used to be fairly active until this slew of hellish symptoms came my way. I've done every test imaginable. EKG, Echo, Holter, blood tests... Nothing comes up(aside from something borderline at worst). My GP refuses to do any specialized testing(for leaky gut or perhaps autoimmune illnesses) and even the cardiologist just shrugged me off suggesting that I'm "too young" to have any major cardiac issue without anything congenital. Yet I feel random shortness of breath during sporadic parts of the day. The chest pain can be worse at times and less at other times. Movement makes my chest pain worse with shortness of breath(heart failure anyone?). Literally no one is of any help. I want to turn to secondary medication at this point. Chinese medication maybe? The PPIs don't help. Makes me feel bloated and worse in general, but I have no idea at this point. I just take them without thinking anymore. I go to the ER with severe chest pain and shortness of breath, but get sent back home saying that the EKG would pick up heart attacks and what not. I got an interesting report in my latest bloodtest suggesting that I have some sort of thyroid issue(though it's impossible to know due to strange readings), but I can say for sure that it's not my core problem. 

I get sporadic palpitations and chest pain that radiates to my neck and left arm from my sternum which I guess might be a hiatal hernia. I have some severe esophagitis despite no acid coming up to disturb it. Food just doesn't stay down. It's always up to my throat. At this point I feel like I'm just waiting until I keel over and die for my GP or ER to even blink. 

I don't go out. I don't do anything anymore. I try to walk around a bit, but I feel like I'm already on my death bed at only 20. Is this my life now? Am I supposed to just accept defeat and crawl into a hole? There's apparently no cause except "anxiety". My blood circulation is awful at this point making me tire out easily and get chest pain and shortness of breath with any exertion. 

It "isn't serious". But I literally have no life anymore. I'm just suffering daily and the things I hear online rarely help either. Can anyone just relate to how awful life can become with these mystery issues? It's gotten worse and worse and I feel like those "healthy" teenagers who die "healthy" are defined by these standards. My heart acts strangely, sometimes opting to race and sometimes being slow and causing chest pain. There are times I legitimately thought I was done for, but I guess it wasn't time just yet. 

"Stomach Problems don't cause any cardiac issues or shortness of breath"

Well, I guess I'll just die then. My dear parents suffer so much because of me too. I can see the fear in their eyes every time I have the pain and shortness of breath. I'm just so miserable. All my fellow age young adults going to college and setting up their futures. How I envy them so...

If you made it this far, thank you so much for reading. Just sharing this gets a lot off my chest and just a little bit of sympathy comes a long way. Please don't be that one person who suggests heart failure, thyroid storms, heart attacks, pointe de torsades, COPD or whatnot anymore. I'm tired of pondering the possibilities. The tests say otherwise, so I just need to learn to cope(until I can't and succumb). 

2

Just so you know, you are not alone.  I'm 57 and I have some (maybe more) of the symptoms you have 24/7.  In my opinion is all reflux related and yes, reflux can spread around pain and give you asthma like symptoms. Maybe even COPD symptoms but is worse because we have no medication for it. ;-((   I'm christian so I trust in the Lord  I will reveive my healing, so fear is not an issue for me.

Many times we feel better when we know we are not alone, so trust me when I tell you you are not alone and there is always hope at the end. I believe your first step is to deal with fear and anxiety, they can do more damage than anyhting else. So join a facebook page and go to a church, is not good to feel alone. ;-)

God Bless!

Jose

 

3

Please don't give in or give up. It can be a debilitating illness if you let it. Take one day at a time. Set yourself goals for each day and I promise you that you will learn to manage your symptoms and recognise that you can cope. I have suffered for many years. Good and bad days but I get on with life. You must not let it take over your life. It really is not life threatening. Get help for your anxiety and I promise you the more relaxed you are and the less stress you have, you will begin to feel better.

Good luck

4

Hello!

I haven’t read all of your long email but I have empathy with a lot of what you have written and indeed, how you are feeling.

I’m a lot older but much of my symptoms were the same as yours.

I was fed up with GPs telling me to double up the dosage each time I visited them with increasing discomfort .

It seemed to be all about treating the symptoms and not the cause .

I asked to see a specialist and a gastroscopy procedure confirmed a hiatus hernia.

I have and had tried everything - as well as reading forums and the like but when nothing changed - enough was enough !

My friend suggested reading 

Dr. Jonathon Aviv’s book 

The Acid Watcher’s Diet .

It’s changed my life .

It’s a tough 3 months on a very, very strict diet but it worked for me ; not only am I symptom free but I do not need to take any medication either.

Don’t be put off by the size of the book as half of it is full of recipes to help you plan your daily diet.

I don’t know if it has or hasn’t worked for anyone else but I was at my wits end with the pain and discomfort-I tried it and haven’t looked back.

I also lost 9lbs in weight, which was an added bonus !

Good luck !

5

DMile, I am so sorry to hear you are suffering so terribly and that your physical pain is being compounded by unconcerned or uninformed medical professionals.  I read and reread your message carefully, PLEASE research the function of the diaphragm and hiatal hernia.  I am going through the same symptoms and researching everything I can find to try to get well.    People with hiatal hernia often have a malfunction in the diaphragm muscle that can cause shooting chest pains, shortness of breath, nausea, vomiting: With hiatal hernia, this is NOT anxiety, it is physiological caused by the malfunction in the diaphragm that controls so much in the body.   An endoscopy or barium swallow test can find a hiatal hernia.  You may have to keep calling and begging until you get help.  There are rare types of hernias that if left untreated can be dangerous.  There are breathing exercises, self massage, yoga breathing videos free on the major video share website here in US.

Remember, the ER is only there to keep you alive, they don't do studies to understand causal symptoms.  They make sure you are not dying today of any immediate life-threatening illness and send you home.  PLEASE find a gastroenterology doctor who understands hiatal hernia.  Ideas I use that may help a little, though I still have horrible symptoms that make my life miserable and leave me weak and lifeless  but I use these hoping for help:  Prevacid, ranitidine, carafate, phenergan for nausea, eating only small amounts, no food after 4 pm, small amounts of liquid, no carbonated drinks, no caffeine, no sugar, no dairy. Try oatmeal/porridge will soak up some acid, Eating bananas and saurkraut (not together) is an old remedy for balancing digestive enzymes and acids.  MAKE SURE you sleep sitting up as much as you can to keep acid in your stomach, put blocks under the foot of your bed, drink warm lemon water in the morning.  Raise arms if you can high into the air and do DEEP Breathing from the diaphragm.  

I send prayers and I am so very sorry.  Please feel less alone knowing that others hear you, understand and believe you.  We know the hell of the pain and suffering you are going through.  It is very scary the medical advice you have been given at 20 years old when no doctor has recognized your combination of symptoms paints a pretty clear diagnostic picture.  Don't give up, keep searching and get the right help.  If you consider hiatal hernia repair surgery, make sure you read ALL the research and all the forums.  Surgery has left some people far worse.  

Blessings and hope, C

6

Thank you for your share.  I have a 3 cm hiatal hernia, open stomach and nausea with horrid acid reflux literally non-stop.  IF you could share any of your tips with me, I would be so grateful.  I am reading horror stories of people who have had the surgery and I am terrified but dropping weight so quickly the doctor suggested a feeding tube and hernia repair surgery.

I am currently on prevacid, ranitidine, carafate, phenergan for nausea, eating only small amounts, no food after 4 pm, small amounts of liquid, no carbonated drinks, no caffeine, no alcohol, no chocolate, no sugar, no dairy, no oils, no mayonaisse.  I basically have to live an extreme Paleo diet but I eat small amounts of oatmeal/porridge in the morning that sometimes helps to soak up some acid, Eating bananas and saurkraut (not together) is an old remedy for balancing digestive enzymes and acids.  I have to sit up in bed as much as I can but cannot sleep well in that position (I am awake most all of the night due to pain or acid).  I drink lemon water in the morning to add alkaline to my system.  I am trying saurkraut and banana, an old time remedy for sick stomach.  

If you have any ideas to share, please let me know.  Thank you!

 

7

Christa. I have the same symptoms as you and more. I am currently on a liquid diet. That is the only way I don't have pain. Even a little yogurt will give me pain. I don't eat after 3 or 4. I drink extremely slow. It may take me an hour to finish a smoothie

Or an Ensure. My doctor told me that after the surgery I will be able to eat normal again. I hope that helps.

8

I am right there with you.  I pray your surgery goes well.  It is a horrible way to live, very limiting, isolating and depressing.  I may reach a point where i become desperate enough to pursue surgery but the stories I have heard make me very afraid.  Please keep me posted on your progress.

9

I am so scared of the surgery. I have been working with my primary doctor aand myinsuance company. My insurance have sent me to two surgeons and they both wrote letters to the insurance company telling them that my surgery is complicated and I would need a top quality surgeon and hospital. My primary doctor also wrote a letter to them. I told them that I don't want to die because you want to save money. So I finally got a referral to Loma Linda Hospital with an excellent surgeon. Now I an not scares anymore because I know I will get better now. It is just nice chatting with people in the same boat as I. I just needed to know that I was not alone.

10

What a blessing that you had these caring physicians advocating for you!  I will be praying for an excellent surgery with speedy recovery and perfect outcome!  You are NOT alone!  Blessings

11

Thanks Christa.

12

I have a hiatal hernia with all of the same symptoms and more. I’ve been to the ED for massive chest pain, back pain, neck and shoulder pain, vertigo, and horrific migraines. Over and over and they’ve told me time and again that they find nothing wrong and I’m a mystery, even when I tell them I have a sliding hiatal hernia. I had to find out on my own that all of these symptoms are related to my hernia, reflux, and the possibility that the hernia is pressing on my Vagus nerve. I had to insist on an endoscopy and have just recently learned that my tiny little hiatal hernia of five years ago is now so large, I literally have no LES left. The hiatal hernia protocol (at least in the US) is PPIs and other meds until you have no quality of life left, or it becomes a surgical emergency. I had to beg, in tears from pain, with full depression with suicidal thoughts, explaining that I have no quality of life whatsoever in order to get that endoscopy. Even small hiatal hernias cause massive problems and associated pain (which doctors do NOT take seriously). I don’t know when yours was last checked but I would insist on an endoscopy if I were you. Good luck man. I feel your pain.

13

I have the have symptoms as you. i was on the phoneyesterday crying to minsurance company and my doctors offices. I accused my insurance company wanting to kill me. I need surgery since my quality of life sucks. I have a surgery consult in two weeks, after the doctor my insurance sent me to is not qualified to do my surgery. It seems like nobody cares. I am just so frustrated a

nd livid.

14

Can  Faith comfort and heal ..well yes ...sometimes its not doing but believing ...It sounds easy but sometimes its the hardest thing for a person to do.. As a human being we want to do something when the Truth is it has already been done at Calvary (The Cross). So its not what I do, its what the Lord DID..that gives the Spirit the legal right to help us to Total Victory...Maintain your Faith their alone on a daily basis and gradually you WILL see the change and be prepared to receive it..as it may come in a unexpected natural form.The Enemy will try to move your Faith away from the Cross...but I found that he is the ONLY ONE I can count on NO MATTER WHAT,,,,

Best Wishes My Friend. Gal 2:21