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    Old 12-01-2003, 06:27 PM   #1
    Beethoven_00
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    Chronic abdominal pain, polyps and more

    I have been following this board for some time now and this is my first post, it is lengthy but I hope you will find time to read it, as I am desperate for any suggestions. I have a lot to say and I hope there is someone out there that will listen. My name is Beethoven_00 and I have been suffering with chronic abdominal pain since I was 15 years old. I am now a 19-year-old young man who is desperate for answers. To start off I will give some history.

    When I was younger I suffered 3 attacks of severe upper abdominal pain. These occurred when I was 9, 11 and 13. I was hospitalized for two of the incidents. The pain would come on suddenly, last several days to a week and then disappear as fast as it had appeared. I was given Demerol to ease the pain. I was unable to walk upright, unable to eat or drink and scarcely slept. I would curl up and moan and take hot baths or use a hot-pad to try to ease the pain. I was told that some children suffer from "tummy aches." I feel I was not taken seriously and looking back on it now infuriates me, I know my pain was real but I was never given the proper examinations or even an ultrasound. From the time I was 13 to the time I was 15 I lived symptom free.

    In December of 1999 I got what I thought at the time must have been some sort of stomach flu, the problem was the symptoms never went away. It was sudden onset of nausea, I never vomited but it felt like I had to all the time. Almost like it was on its way up my esophagus, like a lump in my throat. Eating would cause the nausea to become much worse and when I ate I got intense upper abdominal discomfort and pain that prevented me from eating. I went from 145 to 120 in a little over 6 months. At that time I was so concerned about my weight and appearance I forced myself to eat through the nausea and pain and made it back up to about 130. I discovered early on that fatty foods contributed to my pain and decided that KFC was a particularly bad offender. The chronic nausea and pain in the upper abdominal section was steady from the time I got up to the time I went to sleep, every day of my life.

    The pain and nausea remained constant worsened by food, however there were times when a "flare up" would occur. In April of 2001 I had a bout of considerably worsened nausea accompanied by an attack of upper abdominal pain which lasted about 4 days. On the last day I am told I passed a very pale/off-white stool, as my mother recounts, however I do not specifically remember this. It was the first time I had not attended school due to my problems. I pushed on at all other times despite being in such pain at times that I could scarcely pay attention in class.

    From the day it started until now the pain has gradually worsened and while I have pushed on, attended school and even one year of college I am no longer able to do so. I have had many tests and have tried many medications for the nausea component of my illness, none of which worked. There are no findings of thyroid disease. I had a CT of the head, hida scan (without CCK), ultrasound, upper GI and small bowel follow through and endoscopy that have been unremarkable except on one occasion I had a small duodenal ulcer, very tiny, for which I took Losec and in a follow-up it was gone. Liver enzymes and CBC have been normal.

    In desperation my parents paid for a body MRI scan, with contrast dye. I believe it was the first and only place you can pay to have the test done in British Columbia. The report said:
    "A very small filling defect is identified in the gallbladder on the T2 weighted sequences and as a result I could not exclude the possibility of a small gallstone." The conclusion was "possible tiny gallstone. Ultrasound is suggested if not already performed. No other significant findings." Of incidental note was the presence of a small accessory (second) spleen, which I am told is nothing.

    On the recommendation resulting from the MRI I had another ultrasound. Leading up to the ultrasound I had been feeling worse than usual. Because of this I had been eating less. I almost went a whole day without eating before the ultrasound. After the ultrasound I had milk pepperoni and cheese bread, a horrible decision in hindsight. I went back to my apartment and was hit so hard by the abdominal pain I was sure something had exploded. I was in tears shaking and hysterical and I threw up. I had never had such a severe reaction and I hadn't thrown up because of my gastrointestinal problems since I was hospitalized at 13. My girlfriend and I went to emergency and I was in tears, something totally a-typical of my personality. It took 3 hours to get in and when the young doctor in training saw me she gave me some Demerol for the pain and sent me on my way, I wasn't even given a blood test. It eased the pain for an hour or so, but by that evening I was in such pain again that I went back to emergency. I waited another 2 or 3 hours and this time the doctor gave me an antacid cocktail, which didn't help one bit. She suggested I try some Losec, which earlier on in my diagnosis process I had been on for 7 months or so without success.

    A few days after this trip to the emergency and after a few days of recovering on an all-liquid low fat diet I got the results of the most recent ultrasound. It read:
    "There is a small non-mobile echogenic focus arising from the dorsal aspect of the gallbladder wall measuring 5.5mm in diameter - likely a solitary polyp. No abnormal gallbladder wall thickening or cholelithiasis. The common duct is not dilated with liver, pancreas, and kidneys unremarkeable. There is no free intra abdominal or pleural fluid. The spleen is not enlarged with a small accesory splenial in the region of the splenic hilum. The latter measures 1.2 cm in diameter. SUMMARY: Solitary gallbladder polyp."

    After my family doctor told me a polyp was normal and nothing to worry about I more or less demanded a referral to a doctor who helped write a paper for the Canadian Journal of Gastroenterology titled "Gallbladder polyps: Epidemiology, natural history and management." Based on the evidence highlighted in this paper, the authors recommend resection in symptomatic patients regardless of the polyp size and resection in patients whose polyps are solitary. In asymptomatic patients' regular ultrasound follow-ups are recommended at the very least. In another paper the same doctor helped write, it states. "The finding of decreased gall bladder emptying at cholecystokinin-cholescintigraphy is the only objective characteristic of gall bladder dysfunction. So basically the only way to determine gallbladder dysfunction is a hida scan with CCK. It will be 8 months at the minimum before I can see this doctor for my case is considered not life threatening.

    My family has an extensive history of gallbladder disease. My Mother, her sisters and my grandmother have all had their gallbladders removed including people on my dads side of the family as well a cousin who got one out at the age of 11. In Canada the hida scan with CCK is controversial and appears not to be recognized by many doctors. My doctor was unfamiliar with the test and wouldn't even entertain the notion of gallbladder disease in the absence of stones. In 2001 the local gallbladder specialist told me to he would never remove a gallbladder from a child in the absence of stones. He told me to tough it out till I was thirty or so. In Canada it appears only clear evidence of gallstones qualify for surgery, due to our stringent provincial guidelines. This new doctor I got a referral to is in another province. He said that even if he were to do a ERCP test, - a surgical scope of the gallbladder, that revealed any "congenital abnormalities" of the gallbladder or any other problems that "may be the cause of my distress" it would be considered gallbladder malfunction and therefore not warrant treatment. I was told to tough it out. The ERCP test was not done. This is one of the many reasons I have been looking to find doctors outside this sphere of ignorance.

    I have been told to go home and get on with my life. I am sick and tired and at the end of my rope. Lately I have found myself in tears of desperation, something I had avoided doing until recently. I am depressed and desperate. My family and girlfriend are supportive but unfortunately my doctor and the medical system are not. I live day to day, meal to meal with little hope of ever feeling normal for I have forgotten what to feel normal is like. The only hope I have is that this new doctor which I get to see in 8 months or so will recognize my symptoms for what they are. 8 months is a lifetime for one who lives in constant pain and discomfort. I believe the gallbladder is the only unexplored region left but I am open to any suggestions. Being told that there was nothing wrong with me…and even if there was it probably wasn't going to kill me, left me with nowhere to turn. It was hearing the stories of other people on this board in similar predicaments such as actudan, tweety 22, katie g and many others, that have given me some hope in seeing that I am not alone. Due to the lenght of my post my symptoms appear in a seperate post.

    Any suggestions are welcome, including those for pain management. Thank you for your time.

     
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    Old 12-01-2003, 06:28 PM   #2
    Beethoven_00
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    Re: Chronic abdominal pain, polyps and more

    To recount my symptoms at present are the following:

    - Nausea (constant and persistent)
    - Pain in the upper middle of the abdomen which becomes much worse when eating and staying much worse for an hour or more before the pain comes down to a more tolerable level, the pain is always present like the nausea.
    -During flare-ups there is a significant increase in pain that lasts for days before coming down to a tolerable level, however this doesn't happen often.
    -Pain becomes worse no matter what I eat but appears to react to fatty foods the worse, which I have eliminated from my diet, I am also very afraid of suffering another "flare up."
    -Small burps and gas after meals
    -Stomach acid on occasion in addition to the pain but completely separate (a newer development)
    -Starting to notice tenderness and pain when poking under right rib cage (newer development)
    -Often my stool is a light brown color, a yellow brown, almost a dark mustard

    I have also developed
    -Exaggerated tremors in my hands which are worse when tired or hungry
    -Urinary frequency
    -Insomnia to some degree

     
    Old 12-01-2003, 07:30 PM   #3
    carebear73
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    Re: Chronic abdominal pain, polyps and more

    I cannot believe that the doctors have told you to go home and tough it out. I was just wondering what part of BC you live in? I am in Vancouver. I had my gallbladder removed 6 weeks ago. I had been suffering with abdominal pain for almost 9 years. I am 30 now. My other symptoms didn't start until about 2 years ago. Nausea, shoulderblade pain, headaches, chills, belching, ab pain still, diarreah and just a general feeling of being sick all the time. I went for ultrasounds,xrays, barrium swallows.Everything was normal. I knew it was not all in my head. Finally at my persistance I told my doctor that this was enough. She sent me to see a surgeon who sent me for a hida scan. My gb did not fill up at all. No stones were detected. They determined I had chronic cholestistis (chronic inflammation of the gallbladder) I had it out 6 weeks ago. My advice to you is to either push your doctor or get a new one. Gallbladder problems run in my family too. 4 on one side and 1 on the other. I always had a feeling thats what it was.. and it was. I know how tiring and frustrating it can be believe me. I do feel alot better, although I am still recovering and can't eat normal foods yet. If you want to exchange emails, I could give you the names of a surgeon down here that has done alot of gb removals. Let me know. I know how you feel. Hopefully something gets figured out soon.
    Carebear

     
    Old 12-01-2003, 07:34 PM   #4
    carebear73
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    Re: Chronic abdominal pain, polyps and more

    Also, I know how hard it is to stay positive. Towards the end everything I ate bothered me. Including fruit. I ate mainly crackers and toast. That's about all I could tolerate. Let me know how you are doing. Thanks.

     
    Old 12-01-2003, 07:38 PM   #5
    carebear73
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    Re: Chronic abdominal pain, polyps and more

    No stones were ever found.. during the hida scan or after they opened the gb after the surgery. So just because no stones are found doesn't mean you can' t still have problems.

     
    Old 12-01-2003, 09:19 PM   #6
    Beethoven_00
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    Re: Chronic abdominal pain, polyps and more

    Thanks for the kind words. Its good to hear from a fellow canadian. I live in Northern British Columbia and have been up to Vancouver many times when I was younger to visit Children's during my diagnostic testing. I too had a hida scan in June of 2000 which told me "the gallbladder ejection fraction at 26 minutes following a milkshake is 35%" I would definitely be interested in swapping emails though I'm not entirely sure how to go about it without posting personal information on the board, which I believe violates some rule. How does one go about swapping emails on this board? Getting in touch with a gallbladder surgeon is great but I need one who believes my symptoms are a result of gallbladder problems and remove it accordingly. So far the only way I know how to do that is by getting a hida scan with CCK, the only test to show gallbladder function. Is that the type of test your surgeon refered you to, or was it a normal hida scan? I'm not sure if my gallbladder function is 0% percent but now that I think of it it has been a long time since I've had even a traditional hida scan, and things have gotten worse since then. My biggest problem is getting a surgeon who is convinced that my gallbladder is the problem. That must have been very tough subsisting on toast and crackers, and while I'm not at that point yet the foods I do eat have become more and more bland and low fat, so I can definitley relatate. Thanks again for your support.

    Last edited by moderator2; 12-03-2003 at 01:51 PM. Reason: Do not swap emails or contact information in any way whatsoever. This board is for anonymous use only. Please honor your agreement the use the boards as per the guidelines. Thank you.

     
    Old 12-02-2003, 12:41 PM   #7
    carebear73
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    Re: Chronic abdominal pain, polyps and more

    Quote:
    Originally Posted by Beethoven_00
    Thanks for the kind words. Its good to hear from a fellow canadian. I live in Northern British Columbia and have been up to Vancouver many times when I was younger to visit Children's during my diagnostic testing. I too had a hida scan in June of 2000 which told me "the gallbladder ejection fraction at 26 minutes following a milkshake is 35%" I would definitely be interested in swapping emails though I'm not entirely sure how to go about it without posting personal information on the board, which I believe violates some rule. How does one go about swapping emails on this board? Getting in touch with a gallbladder surgeon is great but I need one who believes my symptoms are a result of gallbladder problems and remove it accordingly. So far the only way I know how to do that is by getting a hida scan with CCK, the only test to show gallbladder function. Is that the type of test your surgeon refered you to, or was it a normal hida scan? I'm not sure if my gallbladder function is 0% percent but now that I think of it it has been a long time since I've had even a traditional hida scan, and things have gotten worse since then. My biggest problem is getting a surgeon who is convinced that my gallbladder is the problem. That must have been very tough subsisting on toast and crackers, and while I'm not at that point yet the foods I do eat have become more and more bland and low fat, so I can definitley relatate. Thanks again for your support.
    I'm not sure how to go about the email thing either. I had the traditional hida scan where they inject the dye into you intravenously.. after 2 hours my gb still did not fill up. So they gave me a small dose of morphine to shoot it back up since it was now in my lower intestine. That worked. The doc told me right there that they often see that in people with chronic cholestystitis. I know it's hard to find someone that believes you. I had that with my doctor. She sent me to a gastro doc and she said there was no way it was my gb. Well, look what happened. I kept telling my doctor it was my gallbladder. I guess after enough pressing something actually got done about it. You know your body best. If you have a feeling something isn't right.. then go with that. Having the history in your family should be a major factor for the doctor right there to have it looked into more. They didn't really investigate with me because all my u/s came out normal. And everything else turned out normal. Keep insisting.. that's all I can say. If not, get a different doctor who will not beat around the bush with you. I just know how hard it is to get someone to listen to you. And I wouldn't want anyone to suffer for years of not knowing what is really wrong. You have my support. There is a very good surgeon down here that specializes in gb removal. Unfortunately, I didn't get it removed by him lol. Just stay positive and assertive. You are in my prayers.

    Last edited by moderator2; 12-03-2003 at 01:50 PM. Reason: Do not swap emails or contact information in any way whatsoever. This board is for anonymous use only. Please honor your agreement the use the boards as per the guidelines. Thank you.

     
    Old 12-02-2003, 04:37 PM   #8
    Beethoven_00
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    Re: Chronic abdominal pain, polyps and more

    Thanks again.
    I noticed in another one of your posts you were suffering some pain after gallbladder removal. I hope that it is nothing more than your body adapting to functioning with no gallbladder. Im sure you did the right thing if it ended the chronic pain and discomfort you were feeling. You'll have to let everyone know how that turns out and I hope you are feeling well again soon. Thanks for the encouragement. I don't plan on giving up any time soon. Its good to hear of people who were in my boat. I will definitley get more information on the surgeon you speak of when the time comes but first I need someone to figure out its the gallbladder causing the pain. I'll just have to keep insisting. The doctor I plan to see in Alberta has an e-mail. I plan on getting a copy of my doctors referal to him, find out what he said. From there I will send this doctor in Alberta an e-mail or letter and stress my desperation or present some things my doctor may not have included in the referal. I hope that will speed along the whole process. Thanks for the encouragement and advice.

     
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