Living with Bile Reflux Disease: When Your Stomach Hates You
What Is Bile Reflux Disease?
Many people in general conversation will acknowledge GERD or acid reflux disease. However, when I mention that I have bile reflux disease, the eyebrows raise in prelude of the barrage of questions. To me, it is a physical nightmare plagued with pain, days off from work, loved ones looking at you with hopeless concern, and, my favorite (and I mean this with complete sarcasm), a barrage of doctor visits usually plagued by the feeling the doctor doesn't believe you.
It is real and, for the most part, life-altering. When my gastric doctor first told me I had it, I wasn't sure what it was. You see, he didn't really explain. I had to go on my computer, look it up, and learn for myself. According to the Mayo Clinic, bile is caused when bile from your small intestine back flows into your stomach. For me, this causes my stomach to go into violent spasms. Think of it like the feeling the neighborhood boys had as kids when they would have fun punching each other in the stomach. While we're eating, we tend not to pay attention to every time we swallow. As soon as we do, we are already chewing the next bite. With bile reflux, you feel every bite hit your stomach. The first time this happened to me, it scared my family to pieces because I doubled over with every bite I took. Hence, an emergency room visit shortly followed.
This condition happened to me because I had my gallbladder removed years ago. Now I no longer have the organ to store digestive fluids from my liver. This does not happen to everyone who has had his or her gallbladder removed. There are many people I know who live perfectly happy lives without this tiny robin's-egg-blue organ. However, I do not happen to be one of those people.
You can also develop bile reflux disease from having gastric bypass surgery or peptic ulcers. Therefore, do not think that this condition is exclusive to people without gallbladders.
Symptoms of bile reflux disease are very simple and short. However, each one packs a powerful punch to your body.
1. Unintended Weight Loss: This is the most devastating one, in my opinion. I am not a very big person to begin with. For a person my size to drop 20 lbs. in nothing flat is not uncommon. This can be very dangerous for me and weakens my body. It takes months to regain what I can before the next episode hits me. Then I have to do it all over again. It is a vicious cycle. If you are unfortunate to be a tiny person like me, you get many people calling you anorexic or bulimic. I am neither of those. It is a fight I have to monitor with a weight scale daily. Up means I am progressing and my medicines are working. If my weight starts to drop, my digestive fluids are attacking me, and an episode will follow shortly.
2. Nausea: Everyone feels sick to their stomach at some point. However with bile reflux disease, you are sick to your stomach all the time.
3. Vomiting Bile: If you do throw up, there is no content to it, just greenish yellow bile that burns. Unfortunately if you start throwing up, you can't stop, and your stomach is already in spasms.
4. Occasional Coughing or Hoarseness
5. Frequent Heartburn: You feel it all over your stomach. It is a gnawing, burning sensation that does not go away. It is accompanied by the inflammation of your stomach.
Diagnosis and Treatment
I found out I had bile reflux disease by having an endoscopy performed, which I would recommend to anyone experiencing the same symptoms. Your doctor will then prescribe medications to contain and lessen the symptoms. However, there is no cure. There is just management. Be prepared to occassionally have lots of blood work done as well. I was told they do this to monitor my digestive levels in my pancreas. If left untreated, the bile can cause ulcers in your stomach or lead to cancer in your stomach, pancreatitis, and so forth. If your doctor does diagnose you, I would also recommend applying for FMLA through the company you work for. This is because you will miss work from having episodes, doctor visits, and so forth.
Most of the time, you don't really have anyone to talk to about this. The number of people with bile reflux is not high compared to people diagnosed with GERD. Their symptoms, though similar, are not the same. There are support groups for people with GERD, but I have yet to run into another person suffering from bile reflux disease. I am lucky enough to have a great partner who tries to understand what I am going through, but it isn't the same as speaking to someone else suffering the same things. I would love to start a support group, so people like myself can vent our feelings about this condition. It was depressing for me to sit in my doctor's office a year ago and be told that they can't fix this yet. That surgery usually is not successful. Lifestyle changes are not very helpful either. Though changing certain things in your eating habits might lessen the symptoms, it does not cure them.
A good online reference to read about bile reflux disease is located on the Mayo Clinic website.