Bile Reflux Disease - Ways to Cope with Your Stomach
Never Walk Alone... The Journey is Long
A Personal Journey
In reading some of the comments placed on my first article, it inspired me to write a second article about my experiences living day to 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 affects on me are draining. In reading some 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 individual in severity, pain, nausea, weight loss, etc., which leaves sufferers feeling very alone when we need support the most.
The first thing anyone diagnosed with this condition should do is pay very close attention to your doctor. What I mean by this is very simple; Fire them if you don't like them. In my case the "team" I had wasn't working. They switched my medications around at 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 too, wouldn't place me on medical leave, and I realized they weren't even doing the basic patient check ups at visits. All the while, my "episode" was getting worse. I was dumbfounded once I fired the doctors, and hired new ones, to discover just how sick I was this time. I had vertigo so badly, and didn't even know I had fluid on my ears. The old doctors said it was nerves and placed me on an anti-depressant. The new doctor looked in my ears, placed me on antibiotics, and 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 mucous 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 doctor won't listen, fire them.
Another thing a person suffering from Bile Reflux Disease should be aware of is the medications they are prescribed. Something doctors tend to forget is that we are people who have lives. If a medication doesn't seem to be working, or you experience adverse side affects, or question if you should be taking the medicine, then bring it to the attention of your doctor. At one point I was on so many medications I was getting lost if I took it or not, and the combinations of some of the medications were producing horrible symptoms. Do not be naïve thinking 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 is very needed when your stomach or colon is in spasms. "Drying out" can happen with over the counter suggestions they give you as well, such as Maalox, and products like it. I am in no way advising you to stop taking these medications. However, 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 they had me on all sorts of antihistamines, and the Bentyl, and I had various rounds of cortisone shots. Some antibiotics can cause constipation problems as well. 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, and it would drop my blood pressure so low, 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 scare yourself, but educate yourself. What happened to me this round, has differences from the other episodes I have had. In addition, what triggers my Bile Reflux may be entirely different from what triggers yours.
Never forget 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 certain things going on in ones life might trigger an episode. However, Bile Reflux is not a mental condition. You are not CRAZY.In the course of the last 5 months I have had a lot of blood work done, a cat scan, x-rays, countless office visits and medications redone, an endoscopy and a colonoscopy, got rid of my regular doctor (DO), and hired a new medical doctor (MD), new gynecologist, and gastrointestinal doctor. I am feeling better with the new team I decided to entrust my health with. Bile Reflux 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 completely crazy. You are not CRAZY. I can not express 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, I have bad days. There may not be a cure, but I do plan to have more good days than bad.
Never give up hope. In my case I fight weight every day. I am a tiny person, so it is very important to watch my weight. I am not Anorexic, I am not Bulimic. I love food, some days alittle too much. Unfortunately, when an episode for me occurs, I drop weight so fast it gets dangerous for me. People who do not understand what I am going through tend to label these two eating disorders quickly. 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 will hear some 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 things, make sure I eat. A good point my gastrointestinal doctor discussed with me was about protein, and weight gain. I need it, but not all things sold that say weight gain are good for someone with my condition. Talk very closely with your doctor to see what would be good for you. I stress this because some weight gainer and muscle mass helpers can cause ill affects on a Bile Reflux Disease sufferer. 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 too, because in the back of my head, I know another espisode will happen, and I will have to do this all over again. Sometimes it feels like an uphill battle, but I just keep at it, by sticking to my routine. Another aspect of the weighing myself each day is that it in a small way lets me know if I am heading for another episode. If my weight starts dropping and I know I am eating and taking my medications, it is very probable I am backing up again. I must manage myself. You must manage you. Find a routine, which will help you try to live a normal day.
The best thing for a Bile Reflux Disease sufferer, is knowing someone close or they love is there for them. Get daily hugs from that person. You need it. I can not express all the emotions I have felt over the years, or how many tears I 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 alongside all the pain and symptoms 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 destress yourself as best as possible. Doing little things to pamper yourself such as; baths, reading, walking, cooking a nice meal, lighting candles that smell great, etc... helps you feel good, but also helps you feel like a human and not a medical guinea pig, or worse feel completely alone.
In conclusion, Bile Reflux Disease has no current cure, just management of 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 while having to live with 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.
If you would like to chat more please visit: www.bilerefluxdisease-projecthope.webs.com/
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