Courageous Stories
Share your experience of living with a digestive disorder – it can be therapeutic for you as well as others who suffer. Share your story.
I am 22 years old and 6 months ago I was diagnosed with GERD. As a teenager I was always stressed, as I was living with an abusive step father. I suffered with panic/anxiety disorder along with depression. At age 13 I began regurgitating massive amounts of acid/ bile every morning. I went to a gastro-specialist who found gallstones and they wanted to take out my gallbladder because they thought that was causing the problem. However they said if they do take it out it may not stop the regurgitation, so what was the point? So I went to another specialist. I had multiple tests that a normal 13 year old shouldn't be going through. I can’t count how many endoscopies, MRI's, ultrasounds etc. that I have had; they found a good amount of damage in my esophagus. I was not surprised. They put me on esomeprazole but it did not help.
I stopped seeing the specialists because they couldn’t find a diagnosis. I began seeing a doctor who is a regular primary care doctor, not a specialist! He sat and talked with me for about 1/2 hour. He told me that it sounds like I have GERD, and he gave me samples of a different PPI since I have no insurance. About 3 days after taking the medication I completely stopped vomiting. It’s crazy that it took 9 years to diagnose me and fix me. I was so sick of waking up every morning just to vomit, I began thinking this is hell, and I don’t want to deal with this any more I wanted to give up! I am so happy that I found a doctor that actually sits down and talks and actually cares, not a specialist who is in and out giving me 3 minutes to explain what’s going on and to have to pay $200 a visit for 3 minutes of their time. That day I met my new doctor was the first day I walked out of a doctor’s office feeling relieved, and taken care of. I have been vomit free for 6 months! After 9 years of hell and I am loving waking up in a good mood.
– Lauren
July 4, 2010
I am 27 years old and have been suffering with GERD for the last 10 years. It all started when I was 17 and started having occasional heartburn when I would lie down and go to sleep. By the time I was 18 and starting my first year of college, the heartburn was so bad that I could no longer sleep laying down and had to prop a pillow up against the wall near my bed and attempt to get a couple hours of sleep every night. Eventually the heartburn became so bad that I was experiencing it all day long and not just at night time. When I was 19 I went to see a gastroenterologist who did an upper endoscopy and diagnosed me with GERD and told me that I had esophageal ulcers. Between the age of 19 and now at age 27 I have tried almost every single medication that is out there for GERD. They all worked great for a while and then after a year or so they would stop being effective. I have tried EVERYTHING; controlling my diet, lifestyle changes, everything, and nothing seems to effectively help my acid reflux. The current gastroenterologist I'm seeing said she doesn't think I'm a candidate for surgery. I'm not sure why, as I'm only 27, have had this for 10 years now, it's obviously not going away, and I've tried almost every medication there is without long-term success. I'm severely frustrated at this point in time, and after my appointment next week I think I'll be trying to find another doctor and get a second opinion.
– Kara
June 22, 2010
Do you know what it feels like to have a 50lb weight on your chest? What it feels like when your stomach has spasms for over 30 minutes? Heart palpitations that feel like they will never stop? Eating has become so stressful at times I'd rather not eat. If I eat something that triggers, if I eat too much, if I eat too little, if I eat too late at night, if I don't eat soon enough when I get up. I can't begin to remember the last time I had a full nights sleep. I have had symptoms like this for several years and within the last year I feel like I am in constant pain. I found out 3 weeks ago that I have Barrett's Esophagus, my mother and 4 of her sisters/brother have Barrett's or GERD, my grandfather died of esophageal cancer.
In the past weeks I have experienced every possible emotion and I try to remain positive but how is it that so many people can give out advice about something they know nothing about? I feel like I have lost so many things, including friends. I used to go for coffee in the mornings or drinks in the evening. Yes my friends are still there but they don't understand. Going out to eat is a chore, no soda, no alcohol, no ice tea-haven't found a restaurant that serves decaffeinated tea yet, no heavy sauces/spices. I feel trapped! I don't feel like having relations with my spouse because the pressure on my stomach. I wish I could live in my nightgown because that is the only piece of clothing that doesn't hurt. Some how I am supposed to change my lifestyle and move on. Like someone before me said, I understand there are so many people that are suffering much worse but I am having a hard time keeping my head up every day!
– Name withheld by request
June 18, 2010
I have been dealing with GERD now for 8 months. People around me seem to think I should lighten up about it because it is not like I was diagnosed with a terminal disease. I am not sure if they understand how, as much as you want to keep an optimistic attitude, it chips away at you every day. The constant chest pain, the constant meal planning, always worrying about what drugs you are taking and are they safe long term, the side effects and other digestive upsets caused by these drugs, being up all night and the fatigue from sleeplessness and pain. I have anxiety about going to bed because I have woken up many nights with rapid heart rates, bloating, gas, pain. I know that there are people suffering worse illnesses than me but I sometimes I just can't help but get really down about it.
– Name withheld by request
March 9, 2010
It was a Monday, and I felt uncomfortable in class. Tuesday rolled around and I was too sick to attend school. A visit to the doctors only resulted in "a virus" so I was told to stay home until I felt better. Too bad I didn’t feel better! As my absences started piling up, I tried to go back to school. but I wasn’t able. Two weeks and 3 doctors appointments later I was diagnosed with GERD. I am 16, and I was told to make lifestyle changes such as cutting out dairy, greasy foods, spicy foods, chocolate, soda, and any citrus foods. Do you know how hard this is? I don’t think people are aware how crazy this is, unless you have to deal with it. I will forever have to deal with this, and I don’t even know how I will. I can't imagine my life without chocolate.
– Name withheld by request
February 10, 2010[Editor’s note: Some foods worsen reflux. But everyone is a bit different in how they respond to food. Cutting back on a food (eating just a little) may help just as much as cutting it out and eating none. Talk it over with your doctor.]
Like others I had stomach ache as a child, heartburn in pregnancy and a 'delicate stomach' thereafter. My baby daughter was diagnosed as lactose intolerant, and I thought I might be too, so cut out the dairy. Much better! At menopause I started to get constant indigestion, and have just started on a proton pump inhibitor. I know this is supposed to be courageous stories and I am doing my best to be brave. Until I get a diagnosis I have resolved to be calm, patient, keep a positive mental attitude and distract myself with pleasant activities whenever I can. I am in the fortunate position of not having to care for anyone else and I do appreciate the fact that my time is my own. I can concentrate on things like diet modification and rest. My heart goes out to those of you caring for young children and managing a GI disorder.
– Sally
May 5, 2009
I have been struggling with severe acid reflux for the past 3 years. It began with severe stomach pain, but I did not have the traditional burning sensation one associates with GERD. I went to the E.R., and they treated me for acid reflux after testing to ensure I was not in a life/death situation. I took a PPI once a day for many months, felt better, and then decided to discontinue the medication. The GERD is back now, and I now also experience excruciating chest pain, which sometimes radiates into my jaw and side of the face. I have been to the E.R. twice, and have had an endoscopy once which, thankfully, came back clean. Last night, I experienced 5 hours of excruciating chest pain and decided to "tough it out". I cannot continue to go to the E.R., as it's not the answer! Just called my G.I. to help me get back on track. I am at work today, with only 3 hours of very uncomfortable sleep. My stomach is burning with residual pain from the night. The anxiety over the situation does not make this any better. Final note... hang in there, people!!! There are others that know the hell you are going through. I pray for each and every one of you.
– Name withheld by request
May 1, 2009
Up until about 5 years ago I had experienced periodic (but not frequent) heartburn and was occasionally aware of acid reflux. I used to treat myself with up to 6 or 8 Tums a day. A stress test revealed no problems but an endoscopic examination revealed erosions of the esophagus. My surgeon prescribed a PPI every day, which I have done faithfully. Shortly after starting this treatment all of my GERD symptoms disappeared and I reduced my intake of Tums to one or two tablets a week. After 5 years on this program I recently had a follow-up endoscopy which revealed that I still had some esophageal erosions, although somewhat less than at the time of the first exam. The surgeon described it as a grade one (the lowest of 4 grades, I believe). Nevertheless, he has instructed me to double up on the PPI at least until he schedules a repeat endoscopy in 6 months (and I strongly suspect he will then recommend my staying on that regimen for life.) He claims that many my age (77) are on this dosage of a proton pump inhibitor for the long term without ill effect, and he says my complete lack of symptoms is due to the fact that my reflux does not reach high enough for me to be aware of it. Still, I am very apprehensive about this high dosage every day, although after a week on this increased dosage I have experienced only slight, intermittent stomach pain but more frequent nighttime bloating and gas. I have read that this high dosage, at my age, can make one more susceptible to fractures (blocks absorption of calcium?) and I am an active skier. I wish I could get some independent advice on this.
[Editor’s note: A study published in 2006 in the Journal of the American Medical Association suggested an increased risk of hip fracture in persons taking a PPI, which increased if the patients were taking the PPI a longer period of time, or at higher doses. This is probably due to impaired calcium absorption when there is less acid in the stomach. It is of note that the patients with hip fractures in this study were much more likely to be a cigarette smoker, be thin, be a diabetic, be alcoholic, have had a stroke, had dementia or had previous bone fractures. If you need to take a PPI, you should talk with your doctor about your risk of osteoporosis. Details on this topic can be found in our Clinical Corner under "PPIs and Hip Fractures." Go »]
– Name withheld by request
February 8, 2009
During last summer, I was diagnosed with GERD. I had to go to the doctor's at least 9 times before they found out what it was. So, waiting so much without the proper medication, I also got Barrett’s esophagus. I'm 14, and I think that this is something I should not have to go through or worry about. I mean I’m not saying I’m the only one, but sometimes it worries me, like I wonder if it's gonna hurt me somehow, and not a lot of people understand what it is. They say "oh ya, GERD is just heartburn, no big deal" but to me, it is.
– Name withheld by request
November 14, 2008
I first started experiencing symptoms many years ago. I had constant heartburn, burning stomach aches, burning mouth; I always felt nauseous and I was constantly chewing on antacids, which did not help. Then I was no longer able to eat any foods or keep anything down. My doctor refused to listen to me and told me that young people do not have intestinal disorders and that I simply had an eating disorder since I was losing weight. However, the symptoms continued to control my life, I felt sick everyday, and I lost 20lbs.
I finally changed doctors who gave me an upper GI and found out that I had GERD, among other gastrointestinal disorders. Medication made my life so much easier in the beginning, however I have had to switch medications often and I always have to be careful about what I eat, when I eat, and I still sleep with the head of my bed propped up. The good news is that I have a new specialist who actually listens and is helping me to find treatments that work with my lifestyle. The lesson I learned is to listen to my body and to always have a voice with my doctors, because no one knows your body better than you.
– Name withheld by request
April 19, 2008
I have suffered from what I thought was heartburn, indigestion for more than 38 years. I am 60 years, just retired after 25 years in a very stressful job, which I did at least 2000 miles a week driving. It was really causing problems about 8 years ago so I decided to go to the doctor, who did an endoscope to see if I had an ulcer. He suggested it was a Hiatal hernia, and advised me to lose weight round my waist. However I tried antacids as a short term fix which helped immediately.
I had a really bad cold over Christmas which left me with a dry cough, and sore throat and tongue, and I also find swallowing very painful. But the ever burning pain is still happening every day sometimes twice a day.
I was concerned about my tongue and looked up on a web site for tongue infections, which linked with 'gastroesophageal reflux'. I then researched the symptoms, and found they all matched my own symptoms.
I have now made an appointment to see my doctor, to confirm that I have GERD, and then hopefully to find a cure with either medication or lifestyle changes.
Here’s hoping that my suspicion is correct and I can start some sort of treatment.
– Penny Clist
January 23, 2008
I always had stomach aches as a child. As a young adult, the heartburn became like an inner furnace in my chest. Then I was pregnant and so when I complained to the doctor I was told that it is a fact of life because of my situation. Living on antacids became routine. Eating small meals, sleeping high on cushions during the years of childbirth was acceptable. I had gone to a gastroenterologist after my first child and complained to him about the heartburn and back pain. He wasn’t concerned about the heartburn and thought I had an anal fissure.
After my youngest child was born, my back pain became more intense. An orthopedist could not find anything wrong.
Then the attacks started. With a sore tummy, painful to eat or drink, and constant heartburn, I had gone back to the doctor several times. He told me I had a virus. Finally, I told him I feel silly about complaining, but I have constant headaches, stomach aches, a hard time eating and drinking, and a lack of general energy.
My family doctor decided that perhaps because of my taking so much NSAID’s I gave myself a stomach ulcer. He gave me a proton pump inhibitor (PPI). It was like magic. I was able to sleep through the night. I made an appointment with a gastroenterologist again (12 years after the first one). He was upset that I had not come sooner. The endoscope showed that I have no ulcers in the stomach, but I have esophagitis. In addition to continuing on the PPI he suggested I try to make some lifestyle changes. That part of the plan is the most difficult. Being a mother of five young children and a working mother (I’m an RN) on shift work makes a routine lifestyle impossible. It took me a year and a half to get it organized. I am taking a year off shift work by opening a small home business. This way I am home all the time, can sleep every night, and enjoy family weekends. Wish me luck.
– Riki
August 15, 2007
I was diagnosed with GERD many moons ago. My primary symptom is a persistent dry cough to relieve a tickle in my throat, often to the point of light-headedness, and occasionally to the point of bronchial spasms. The coughing frequently throws me into a temporary asthmatic state. Sleeping with head raised and proton pump inhibitors help, but not completely. When I get a cold, watch out, because the coughing then get frequent and it triggered by almost anything, including swallowing saliva "crooked." Anything that I eat must be smooth since any roughage triggers the cough. There's got to be a better way! But what?
– Fred
August 7, 2007