5 Things That Helped Me Cope With Bile Reflux Disease
A Personal Journey
Reading some of the comments on my first article inspired me to write a second article about my experiences living every day with bile reflux disease. I probably could write a small novel about the experiences I have had. Each time there is what I call an "episode," the effects on me are draining. Based on the comments from my first article, it seems a lot of other sufferers go through similar symptoms. Keep in mind each case has basic criteria and symptoms the doctor uses and diagnoses you with. Each case is different in severity, pain, nausea, weight loss, etc., which leaves sufferers feeling very alone when we need support the most.
1. Evaluate Your Medical Team
Pay very close attention to your doctors. What I mean by this is very simple. Fire your doctor if you don't like him or her. In my case, my medical team wasn't working for me. They switched my medications around on a whim—prescribing things I didn't need such as antidepressants, vitamins, antihistamines, etc. It also seemed at one point they weren't listening to me or my symptoms. They wouldn't refer me to other doctors I asked to be referred to; they wouldn't help place me on medical leave; and I realized they weren't even doing the basic patient checkups during my visits. All the while, my "episode" was getting worse.
I was shocked to discover, once I "fired" my doctors and found new ones, just how sick I had become. I had vertigo so badly, and I didn't even know I had fluid on my ears. The old doctors said it was nerves, and placed me on an antidepressant. The new doctor looked in my ears—and placed me on antibiotics and helped me arrange a medical leave.
Now mind you, the vertigo I experienced is not part of bile reflux disease. However, in my case, I was so sick with an ear infection, it helped trigger the symptoms of my condition. Think about it, if your sinuses are draining heavily into your stomach, would one not feel the affects? The answer is yes. Because even the most talented nose-blower will not get all the mucus out; therefore it drains to your stomach.
When I am feeling my worst, I have noted (for myself and my condition), there are other things going on that usually trigger my symptoms. Logging the things I am feeling, even little pains, or things others might deem insignificant, are usually very important in helping relieve symptoms. If your doctors won't listen, fire them.
2. Educate Yourself About All of Your Medications
Something doctors tend to forget is that we are people who have lives. If a medication doesn't seem to be working, or if you experience adverse side affects, or if you're not sure if you should be taking the medicine at all—make sure you bring these questions to the attention of your doctor.
At one point, I was on so many medications I was losing track of whether I took them all or not, and the combinations of some of the medications were producing horrible symptoms. Do not be naive and think everything the doctor prescribes will help you. Bentyl can "dry you out," causing constipation (so can certain vitamins); however, Bentyl is great at relaxing your stomach and colon, which can be very helpful when your stomach or colon is in spasms.
"Drying out" can also occur with over-the-counter medications that are prescribed, such as Maalox. I am in no way advising you to stop taking these medications. However, you should educate yourself on the side affects, talk to pharmacists, note any changes, and immediately tell your doctor if you experience anything out of the ordinary.
In my case the doctors had me on all sorts of antihistamines, as well as Bentyl—and I also had various rounds of cortisone shots. Some antibiotics can also cause constipation problems. This time around I experienced a "back up" so painful and severe It would be a week before any bowel movements occurred. This was a new side effect for me. Then at times, when there was a bowel movement, it was the exact opposite. My blood pressure dropped so low that my loved one had to stand there with a wet towel on my face and help me up if I passed out. I didn't realize I had developed IBS (irritable bowel syndrome) in combination with my bile reflux disease. My body was poisoning itself because it wouldn't get rid of anything.
Now remember, not all medications do this, so don't let me scare you, but please make sure you educate yourself. What happened to me during this episode was different from past episodes I've had. In addition, what triggers my bile reflux may be entirely different from what triggers yours.
3. You Are in Charge of Your Health and Well-Being
When I am going through an episode, it scares me, it scares my loved ones, and at times I feel extremely helpless. This does not mean I need to be placed on depression medication. True, some doctors feel that difficult emotional situations might trigger an episode. However, bile reflux is not a mental condition. You are not crazy.
In the course of one 5-month period, I had a lot of blood work, a CT scan, multiple X-rays, an endoscopy, a colonoscopy, countless office visits, and many new prescriptions. In that same period of time I also got rid of my old doctor (DO, or doctor of osteopathic medicine); found a new doctor (this was is an MD); and also started seeing a new gynecologist and a new gastrointestinal doctor. I am feeling better with my new team.
Bile Reflux Disease needs to be managed. It takes a lot of research and work on my part, but the doctors should be qualified to help, as well. There will be many times you will be sitting in a doctor's office feeling completely alone, and at some point you may even feel completely crazy. You are not crazy. I can not emphasize this fact enough. There are no words to express the pain I go through when I have an episode. Just as I can not express the pain another sufferer endures. I have been suffering/managing this condition for almost 2 years now. I have good days, and I have bad days. There may not be a cure, but I do plan to have more good days than bad.
4. Never Give Up Hope
In my case, I battle daily with my weight. I am a tiny person, so it is very important to watch my weight so I don't get too thin. I am not anorexic, and I am not bulimic. I love food—some days a little too much!
Unfortunately, when one of my episodes occurs, I drop weight so fast it quickly becomes dangerous for me. People who do not understand what I am going through tend to think I have an eating disorders. Anorexia and bulimia are not symptoms of bile reflux disease. They are their own medical conditions that warrant special care of their own. Still, I sometimes hear an ignorant soul make a comment. It happens, and it will continue to happen. Don't let them get you down.
Implement a routine for yourself. I weigh myself every day, take my medications, and above all, I make sure I eat. My gastrointestinal doctor made a good point about protein and weight gain. I need protein, but not all supplements that claim to be good for weight gain are healthy for someone with bile reflux disease. Talk very closely with your doctor to see what would be good for you. I stress this because certain weight gain and muscle mass supplements can negatively impact bile reflux disease. I found this out the hard way with a past episode I experienced.
I never give up hope though. Everyday I tell myself I will gain that weight back. I have to, because in the back of my head, I know another episode will happen, and I must be prepared. Sometimes it feels like an uphill battle, but I just keep at it, sticking to my routine.
Another reason I weigh myself each day is that it can alert me if might be headed for another episode. If my weight starts dropping, and I know I am eating properly and taking my medications, it is very probable I am backing up again. I must manage myself. You must manage yourself. Find a routine that will help you try to maintain a healthy life.
5. Find Emotional Support
The best thing a bile reflux disease sufferer can do is find an emotional support system. Identify people in your life who love you and want to support you. Get daily hugs from that person, or daily chats on the phone. You need it. I cannot express all the emotions I have felt over the years, and how many tears I've shed. This condition is extremely draining to the sufferer. It is not a mental condition, but it will tug and tear at your emotional well-being, in addition to all the physical pain and suffering you go through
There are days I look at my companion and tell him it's not fair he has to go through so much with me. He tells me I shouldn't go it alone. Everyone needs to feel they have someone to talk to—especially when you are feeling your lowest.
When you are feeling sick, find ways to de-stress as best as possible. Do little things to pamper yourself such as baths, reading, walking, cooking a nice meal, lighting candles that smell great, etc. These things can help you feel good—but perhaps just as importantly, they help you feel like a a normal human being, and not a medical guinea pig.
Bile reflux disease currently does not have a cure; all you can do is manage the condition. Take back your life and control it. You will have episodes. I know I will have episodes. However, I refuse to stop living just because I have bile reflux disease. Educate yourself, take your medications, find ways to decrease the stress in your life, and find a support group if you feel alone. You are not crazy, and you are not alone.