Living with bile reflux disease isn't easy, but I've learned some ways to cope and want to share them with other sufferers.
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.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Marley86 on January 17, 2017:
dragonlady1967, I have found your articles very helpful. When I was 18 I had my gallbladder removed because I had gallstones. When I was 19, I had a colonoscopy and was diagnosed with IBS (probably a product of the gallbladder removal). I am now 30 and still having issues. Ever since I had my gallbladder removed I have had reflux, hiccups (random and consecutively), and inconsistent and inconvenient IBS. After doing some research I think Bile Reflux may be the root of my problems (to be explained below).
Since I was 18, I've been on every type of acid reflux medicine out there. Within the past 2 years I've had two Endoscopes (both totally clear), a barium swallow (in 2015), and pH monitoring (in 2016) and they've determined I have reflux (duh).
I have tried every medication on the surface of the sun. They worked at first and then stopped. Dexilant is the only one that works and as of July of 2016, my insurance is no longer covering it because it's not generic. There is no generic and there is a patent so there won't be one anytime soon. I tried going back on Nexium, Prevacid, you name it. I ended up feeling miserable, having trouble swallowing food, no appetite, and the nausea, I can't even begin to explain how bad it was. I missed several days of work (my co-workers thought I was pregnant bc of the nausea). It would be so bad that I would breakdown into tears. If it weren't for the Dexilant, I would have lost a lot of weight, but it masks the nausea so I'm able to eat. My husband felt helpless and frustrated because there wasn't anything he could do to help. He didn't/still doesn't understand that there is no answer or fix.
I've tried appealing with my insurance and they have denied the appeal all while I'm living off Dexilant samples from my doctor (since Sept 2016). I can't rely on samples and have to find some kind of relief without it.
The IBS I've learned to deal with. I've gotten over the shyness and it is what it is. The reflux I cannot deal with. I know that the symptoms of bile and acid reflux are very similar, but based on the nausea symptom that I have and the research that I've done, I think it might be bile reflux. I already avoid acidic foods, eat healthy, and exercise.
I also take meds for depression/anxiety and ADD. The depression definitely worsens when the reflux can't be managed.
I am going to the doctor in a few weeks and I want to see if he thinks it could be bile reflux. I don't know why he wouldn't have thought of that to begin with. I'm not all that happy with how things have been going so far with my doc. He doesn't seem willing to try and find an answer or a solution. He basically told me that no change in diet will help and that I'll be on meds for the rest of my life.
I know this is an old post, but it certainly felt good to get all of that out to a group of people who understand. My husband has been supportive, but doesn't understand how awful your insides are, mentally and physically, when the reflux is unbearable.
Thank you for listening,
GreenMind Guides from USA on December 25, 2016:
This is a tough condition and I would be much happier without it! Great hub on a terrible condition -- thanks for sharing.
angelaheairet on April 23, 2015:
My story starts with the removal of my gallbladder in March 2014 this was after I began having frequent stomach pain, indigestion and heart burn. At the time of my surgery my gallbladder was functioning at 25% and only had some sludge in it but the surgeon decided to remove it anyway. Months later I was diagnosed with bile reflux disease caused by the surgery. I was told that there was no cure for this disease or artificial gallbladder to reconcile the problem. Per my doctor there is no money in curing the disease or resources to do research due to the fact it does not affect enough of the general population. I feel the removal of my gall bladder was done swiftly and insufficient information was provided at the time about suspected results. I was told that only a small percentage of people have complications and I would have never guessed that I would be that small percentage. Prior to this surgery, I was a very active stay-at-home mom of two girls, 7 and 3. I ran a play group, coached soccer and softball, volunteered at church, participated in the Walk to Emmaus, and ran a 5k. I now live in chronic pain that has taken a toll on my body, mind, my family and our finances. The purpose of this letter is to offer and ask for help. I would love to share my story to help those who are affected and bring attention to this disease. Bile reflux disease causes severe abdominal pain, stabbing in the abdomen, nausea, heartburn, weight loss and irregular bowl movements. It hurts to eat and to not eat. It is not a mental condition, and changes in diet or lifestyle are ineffective in prevention or treatment. I believe bringing awareness to this disease will help thousands of people who live every day in chronic pain. Your assistance would be greatly appreciated as I am desperate to live the life I once had. I have attempted to contact Oprah at Own TV, 20/20/, and KLTV news.
firstname.lastname@example.org on September 18, 2014:
Wow, I found this article very interesting and much related to the issues, medically, have been having off and on for over a month now and is getting worse. Is there anyone out there to speak with on this about. I really, need some relief, HELP!!!!! I find these symptoms irritable and energy draining for me. I had never heard of this Bile Reflux Disease!!!
michelledelynn on September 18, 2014:
Hi Tanya. Yes, glad to see that someone is still out there. Do you know what happened to the origanal gal who posted, dragonlady1967?
Tanya Chaney on September 18, 2014:
Hello Michelle.. Are you asking for me?
MichelleDelynn on September 18, 2014:
I hope you are atill there?
Michelle Shiflet on September 18, 2014:
Are you still there? I need someone to talk to?
Tanya Chaney from Burnsville, Minnesota on December 14, 2013:
Hello everybody.. My name is Tanya. I have had the same health problem as everybody on this blog – bile reflux.
I actually found this blog 3 years ago while I was looking for any help.
I am 99% better then I was 3 years ago before I found the way to cure myself. I have my life back. 3 years ago I thought I was dying and nobody could help me.
So, I would like to share with EVERYBODY that it is REAL to cure bile reflux. You do not need to suffer anymore.
Bile reflux problem I fixed with NAET treatments and hiatal hernia with a help of the chiropractor. You can read the whole story at my website: http://allergyfreeforeverway.com/reviews/sickness-... The only natural remedy that helps in our case is Bentonite Clay. Please read about it: http://allergyfreeforeverway.com/266.
Most people suffering from bile reflux do not understand that the underlying cause of this problem is multiple allergies to different foods, minerals, vitamins, etc.
I even created my blog because I wanted to share and help people who have the same health problem as I had.
If you have any more questions, please send it to my e-mail email@example.com
All my best,
alexandra on June 06, 2012:
I have been suffering with IBS, Bile and acid reflux, and Hirshsprung's disease for the last 7yrs...the only answer for me is a high fiber diet, avoiding trigger foods such as wheat and gluten etc.(Makes for a pretty boring diet).
Getting diagnosed took a visit to Tunisia and a week of tests, the UK would not take my weight loss and complaints of sickness and stomach pain seriously as they explored via an endoscopy and were happy that I simply had bile in my small stomach and suffered from acid reflux but there was no need for concern.
On a recent trip abroad I had an 'episode' resulting in throwing up for days on end, not leaving the hotel and having to call the doctor to administer an anti sickness injection. I have never had such a violent 'episode,' I was honestly scared, which is when I came across your site, I have never heard of anyone with the same illness as myself so for this I thank you, none of my friends can relate as they are all healthy.
On return to the UK I visited my doctor and hove now had stool samples sent for analysis to see if there was a trigger or if there is a miss diagnosis... I will keep you posted to see if this is of any use.
I have found that supplement shakes that provide all the vitamins and minerals needed for the day help when eating food becomes an issue.
There is also another drug I use to control the spasms and the overall 'stress on the stomach' response. Spasfon is a relaxant that is available from Europe (not in the UK - I get them shipped in as there is no UK equivalent) in both tablet and effervescent form, this has been a lifesaver as I refuse to take anti anxiety medication or anti - depressants no matter how small the dose. Every time I feel a niggle I pop two and nothing could stress me out!
As I am naturally slim, loosing the weight takes me a year to put back on every time, I feel like I am stuck in a continual cycle of going from skinny to me and back again and reading that you had the same issues has helped me feel like I am not going crazy (keeping 3wardrobe sizes is always a challenge!).
Thank you for taking the time to publicize your problem x
abby on June 02, 2012:
Omg. Dragonlady you are my hero. I am an 18 year old struggling with nausea and awful burning and gnawing in my gut everyday for over 9 months :( I have been on ppi's (proton pump inhibitors) to decrease acid production in my stomach as my doctor thought I had acid reflux..finding your website and this blog has given me so much hope! I can never thank you enough. I am now armed with knowledge and am ready to go to my doctor and get this shit figured out. I woke up this morning feeling so disgusting (that nauseous, nagging, hungry feeling) that I couldn't even make myself eat saltines which can provide some relief. Finding your posts has been a life saver this morning! Thank you so much!! Reading what you and others have posted I feel like a can now give a name to this sickness I have been feeling and hopefully find some solutions.
paddlinfool on November 11, 2011:
I would agree that stress is definitely a major factor with BRD. Throughout the years each of my flare ups coincided with major stress episodes.However after many years it became a which come first, the stress or BRD? I do know stress can trigger and/or make the situation worse.I have a tendency to take all emotional situations in the GUT, good or bad. Fortunately my current GP doctor is aware of this fact.Biggest problem is finding anything to decrease symptoms, PPI'S do not help. Glad I found this site though, support is so beneficial. I have had healthy periods over recent years followed by horrible disabling episodes.
reflux from USA on November 02, 2011:
Stress is the main cause for Bile reflux.The nerves can become more active during stress, causing the intestines to be more sensitive.
dragonlady1967 (author) on January 08, 2011:
Thanks for your comment Kris - You are correct always look for a doctor who will take you seriously and help to find the cause and treat it. BRD is miserable and to have other conditions flaring it up is twice as bad.
Kris on January 06, 2011:
DrDavid,several months after having a choecystectomy, I started having episodes of the same severe abdominal pain. I waited to go to my Dr, thinking it would go away or that I was crazy. I was told it was possibly IBS or allergys and felt like it wasn't taken seriously. You are right about GI Associates, they are wonderful!!! After several proocedures I found out that I do have IBS, allergys, but also Bile reflux and gastritis! Keep looking for the right physician who WILL take you seriously.
dragonlady1967 (author) on August 18, 2010:
Hi April, It is a real condition, and doctors do look at you like you are crazy. The thing is you are not. The thing about Prevacid, Prilosec, and all the other OTC acid reducers is they reduce acid. This means the bile is still in your stomach even if they control the acid. I too had my gall bladder removed in 1999. Your pyloric valve may be damaged so the only way to know if it is is to see a Gastrointestinal specialist and have an endoscopy performed. Being in rural Ohio you may have to travel to a larger city to find a really good MD and specialist, ie: Dayton, Cincinnati, Cleveland, Lima, Toledo, or Columbus, etc... Mine are in Dayton, and I had to fire quite a few doctors before I found the 2 I am seeing. MD's are about the only ones that will study up on this condition aside from specialists. I can not tell you how lost I felt when my former DO told me he didn't know what to do for me. Stress is a BRD sufferers enemy, but there are ways to control it effectively. The main thing is to know you are not alone, and not let the doctors treat you like you are making this all up. I wrote another article with a lot of people responding. Their comments might be able to help you as well. I started these articles so we wouldn't feel alone.
April on August 18, 2010:
I really thought I was the only one living this way. I'm a high school English teacher, single mother living in rural Ohio. I had my gall bladder removed a year ago on summer break. My surgeon made a mistake when attaching my bile duct. It was connected too high inside of my stomach. I have been suffering for over a year. All of the same symptoms all of you have mentioned. I remember standing in front of my classroom with a wastebucket tucked under my podium, holding my head up at the white board to lecture, having missed too many days of work. This summer my symptoms were not so bad but with the school year about to start, plus I'm teaching two classes at a local community college, my stress level has soared, and so gas my bile reflux. The problem is that I still can't get the doctors to take me seriously or to treat me correctly. They have given me Prevacid and that's all. I drink jasmine tea and it really helps me. Sometimes I have oyster crackers and they are plain enough to help absorb the bile but can lead to constipation if you eat too many. I really don't know what to do, except for what I'm doing now, to get help. There aren't many options in health care here. I have felt so lost. I didn't even really know this was a real condition until I read that other people have suffered. I'm so glad I read your article.
Agata on April 22, 2010:
Hello, My name is Agata and I come from Poland. I am 34. My stomach problems started just after miscarriage, last year. I lost ca. 11 kg of weight over three months. I had an endoscopy done and I was diagnosed with gastritis, plus HP infection. The treatment did not bring me much relief. The PPI did not worked for me. Just the contrary, it made the things worse. Nausea, burning pains accompanied me everyday. I had plenty of medical exams: parasites, candida etc. No abnormalities were detected.
From a lively, energetic woman I turned into a miserable shadow of a human being. My husband and the rest of my family felt helpless, seing me in constant pain. I stopped sleeping at night, could not work, cried because of pain.
Only recently, they repeated an endoscopy which revealed a bile pool in my stomach. And that was it.
I tried to read some Polish sources (they are really few), but eventually, I found your site dragonlady1967.
Based on my experience:
This condition may, indeed, lead to a serious depression and anxiety disorder. Depression, in turn can worsen the symptoms we experience (the intensity of pain). There is a condition called: 'somatisation disorder', it is when our emotions manifest themselves by various bodily illnesses. And stress is a real killer. It is a vicious circle, really, hard to break away from.... In my case it could be a masked depression from the start, which directly attacked my stomach.
As the time went by, my symptoms aggravated. At some point I considered committing suicice. The burning pain, and constant nausea, were so intolerable.
In my case what helped me in my miserable condition was a combination of antidepressants and tranquilisers. Yes, antidepressants. However, it took my docs a long time to find the right drugs, and I have gone through hell taking PPIs, H-blockers, sucralfate etc.
What woreks for me now is a combination of venflaxinum (Effectin) and mirtazapinum (Mirzaten) (small dose). I feel much better, my symptoms alleviated considerably. I hope that my body, deprived of the burden of stress, will regain its balance.
And yes, of course, we are not 'crazy', but it is often some anxiety disorder / depression that its manifested by such symptoms. When being under constant stress, our digestive tract just won't work properly. It is so prone to emotional condition. Therefore, IMHO, it is good to consider antidepression treatment. It helped me a lot - maybe it will be the right choice for you too?
I hope that you find my remarks helpful.
I wish the best of luck to you all!
kim on March 25, 2010:
my daughter is having a real bad attack today everyone plz pray for her she is in so much pain i called the dr they said give her a phenerghan for nasia and see if it would help how is that gonna help her pain she is 15 and thay ack like she is just putting on and she is not i just wish i knew what to do for her
amanda on March 15, 2010:
How can you get a copy of your cat scan? I need to look into that, and get it, because this is definitly what i need to get done.. I think i am going to print out this blog and just show him.. lol. because i cannot describe to him the pain i go through everyday, without them thinking I am completely nuts.
kimberly on March 15, 2010:
my daughter was just told she had bile reflux and acid reflux we know what you are going through i have to set and watch my 15 year old go through this and she is out of school a lot it took me 7 months for the dr. to finaly run the scope in her stomache to find out what was causing all the pain when she has epasodes i feel so bad because there is nothing i can do to help her we have seen sergions and dr. after dr. they treat you like you are crazy until they find out the problem if you get this please email me @ firstname.lastname@example.org and please let me know how you are doing i hate that anyone has to go through this kind of pain but we are and i know how lost and awful it makes you feel i just wanna take the pain from my daughter but i cant it makes you feel useless and not worthy of anything to have to set and let your child be in this kind of pain
dragonlady1967 (author) on January 18, 2010:
Welcome Drdavid... Thank you for your comments. This condition really is life altering. I lead a "normal" life as well (or so I thought). I never thought having my gallbladder removed would ever spark something this horrible to live with. Today is a great day. I wish I could say tomorrow will be great. Managing the condition seems hopeless some days, and a victory others. I am glad that the articles give some hope. Especially with the thought that we are not alone, and we are not crazy.
Kayla on January 18, 2010:
Thank you for writing this. I jst read your other article and commented. I seen this one and had to again. I am glad to know that I am not the only one going through this.
drdavid6380 on January 17, 2010:
Well, another trip to urgent care today. Rough night. Went to bed and felt so-so, but then all of a sudden at about 0230, the pain was horrible. I can only describe it as an intense pain like someone is stabbing a knife into my stomach and it is horrible. I don't know how people live with chronic and ongoing pain. I have cut out just about everything I like to eat in my life. I love food and food is a central part of my family. We cook together, laugh together, and enjoy time spent together as a family in the kitchen. It is hard at times to even be in the kitchen, as food makes me want to puke. I have no appetite, but need to eat. While, dragon lady talks about bile reflux disease, I also have a stone in my pancreatic duct, which the most common cause can be from alcohol abuse. I do not drink, as I have had problems in college with my stomach and drinking and me do not mix because of my stomach. I do miss the occasional glass of wine, but live a wonderful life of laughter, friends, family and colleagues. Probably a good thing that I don’t drink, as alcoholism is in my family, as it is in many families. With the stress of my job, I probably would drink a gallon of wine a night if I could. Not something to joke about, but you have to have a sense of humor.
My stomach problems started when I was 14 years old and had a gang green gallbladder. I almost died and from that point on, I have had this horrible fear of medical doctors. About a year ago in October, I went to see my primary care doctor and my back and stomach were both hurting. I drive about 2500 miles every two weeks, so I thought a lumbar injury or strain. Took the usual meds for this issue, but it did not improve. I had an MRI, which showed en enlarged bile duct, which should have been my first clue. Over the next five months the pain increased and I felt like something was growing in my stomach area. I thought for the worse, but my doctor still did not do any type of lab work. He basically wrote it off as a back injury. It wasn’t until about March that my pain started to decrease, as the weather warmed up, which I thought maybe he was right. It was when he suggested injections that I said no more. I quit all the medications from pain to steroids and began to improve. Around October of this year it began again. I had back, kidney, stomach, leg, and testicular pain. I began to research on the computer, which can be very dangerous, as I realized that I had every cancer and medical problem listed or so I thought. I am not a hypochondriac, and soon realized I needed to get off the internet and find a doc I could trust and work with.
Today’s doctor visit 1/16/2010:
Urgent care visit: I met with a great doctor. The nurse looked at me like I was crazy. I don't think she believed me at all. I have this stone in my pancreatic duct (I had a copy of the recent CT scan), and this started a year ago with a miss diagnosis by my original MD, who told me it was a back problem. He did not even run one test to check on my system. Dr. Scully was wonderful today and made me feel like I was her only challenge for the day. She allowed me to express my frustrations and to discuss my concerns. She spent well over 30 minutes with me, which is unheard of, for the most part, in the world of managed care. The problem with the stone is that it is creating a back up of bile in my stomach and eroding the esophagus where it meets the stomach. In addition, I live in Wisconsin and there are only a handful of docs that will perform the removal of this stone in the pancreas, which creates a delay in treatment, thus, one deals with bile issues and the pain associated with the stone and bile reflux disease.
The one think I learned today, was to be direct and if you are not getting what you need-SAY SO. Don't let staff treat you like you are less than human or that you are crazy. I brought my folder of information in and had a copy of all my records from the last two weeks. This saved time and a lot of explaining to the nurse from hell. Unfortunately, we have many individuals who are drug seeking, as any community, and those of us who really need help to relieve our pain are often put into this category because of others who are malingering.
Today’s lessons learned:
Lesson learned: KEEP A COPY OF ALL MEDICAL RECORDS AND SCANS: Keeping a copy of your records with you when you have to go to the emergency room or urgent care can help with saving money on repeated test(s); explaining your situation multiple times to the nurse and the MD, DO or APNP.
Lesson learned: IF YOU ARE NOT GETTING PAIN RELIEF: I worked with a nurse practitioner who was hesitant to prescribe pain meds, as she felt I might have an upper GI bleed, which I can understand, but her treatment was borderline unethical and not good medicine. She told me that the GI people would prescribe pain meds. The GI people did, but told me that she should be prescribing for me until we get to the bottom of what is going on with the bleeding, the pancreatic stone, and other issues associated with all of this. I do not abuse drugs and cannot take pain meds during the day, as I am in a profession that does not allow me to be incapacitated at any time during the work day. The few providers I have had to see re the above issues were amazed that I was even able to make it throughout the day without a pain med. I do not want to become addicted to these medications and that is why one needs to be direct and move forward to get answers as quick as possible-in my opinion.
DrDavid6380 on January 15, 2010:
I read one of your articles and then I found this one. I am in shock of how this sounds like me. I had a double ear infection and the pain symptoms were mind blowing. I was on my knees at one point and wishing someone would just hit me in the head to knock me out. I had a gang green GB taken out as a 14 year old kid and have experienced on and off again stomach pain. Over the last year, I thought I was crazy. I had a cat scan about a year ago and they found nothing at all. I began to think I was going crazy and it was all psychosomatic-I'm a shrink. Finally, about two weeks ago, I got up the nerve and went to the doc and had a colonoscopy and throat job done. LOL. Awesome staff at GI associates in Wausau, WI. I was so sedated that I didn't get to ask questions after the procedure, but will be meeting with them again in the future. Thank you for your contribution to my understanding of this disease.
In addition, I am dealing with a stone in my pancreatic duct that just developed. I lead a pretty normal life and have cut alcohol out of my life many years ago. I watch what I eat, but it can be something good for me or bad and it depends on how the stars align if it will have me on the toilet or not. Maybe TMI, but it is what it is. I look forward to reading more about what you know and your experiences.