Discussions By Condition: I cannot get a diagnosis.

Digestive Problems - Undiagnosed

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Anonymous
  • January 27, 2007
  • 09:57 AM

Hello,

Approx. 3 years ago I started experiencing RUQ abdominal pain along with nausea, fatigue, and fever. I had my gallbladder removed. The doctor told me within 48 hours I should notice a significant decrease in abdomoinal pain (aside from the actual pain of the surgery and incision sites). The only thing I noticed was the pain getting worse. Several months later I had a sphincter of oddi manometry and ended up being admitted into the hospital and on a morphine drip for a week due to disabling pain.

I have had every test you can think of: colonoscopy, laporoscopy, blood tests, x-rays, CT scans, etc. etc. etc. and everything comes back normal.

Since this has started, my symptoms have continued to get worse. The pain is worse, the fevers are more frequent, I am exhausted all the time. I hardly sleep or eat. There is blood and mucous in the stool. The pain is no longer strictly RUQ pain, it seems to now be RLQ and occasionaly over my entire lower abdomen. I feel like I spend my life in the bathroom as I am constantly running to it, even awakening at night to go. I get sick with colds and anything else that is going around very quickly and it takes a long time to get rid of them. This is not only taking a toll on my personal well-being, it is also starting to take a toll on my professional life.

I have always believed that this is some sort of IBD. I'm curious if its possible that the disease was not advanced enough to be deteced and now that the symptoms have gotten worse if its worth going through all these tests again? My doctor is very disappointing and has pretty much written me off regarding this as "chronic pain" that I will just "have to live with." I'm sorry, but to me, thats the wrong answer. I am currently in search of a new doctor. Regardless, has anyone experienced this? I know that there is something wrong - I believe a person knows their body better than anyone else and knows when something is not right. I do not, however, believe that there is not an answer to what is happening. I cannot continue to live this way. Does anyone have any suggestions? I'd appreciate any feedback anyone may have.

Thanks,

Lex

Reply Flag this Discussion

9 Replies:

  • Lex - if the "traditional" testing and way of looking at things is not giving good insights and results (which is very obvious) how about finding another kind of doc who will look at things differently ? Naturopathic docs, chiropractic docs trained in evaluation and treatment for these types of problems, doctors of oriental medicine are the type I would recommend. If you are interested in that there are sources that can give you references for those type of docs in your area.
    Anonymous 42789 Replies
    • January 27, 2007
    • 02:36 PM
    • 0
    Flag this Response
  • Lex,Ask to be seen by a gastroenterologist. My husband has Crohn's Disease (part of the IBD family) and some of your symptoms sound similar to his when he's having a flare up. If you don't like your current doctor, fire him. Seriously, if we'd have learned this about 15 years ago, it would have saved my husband a couple of surgeries and permanent damage from over use of prednisone.
    bugdog 14 Replies
    • January 27, 2007
    • 03:20 PM
    • 0
    Flag this Response
  • Lex - if the "traditional" testing and way of looking at things is not giving good insights and results (which is very obvious) how about finding another kind of doc who will look at things differently ? Naturopathic docs, chiropractic docs trained in evaluation and treatment for these types of problems, doctors of oriental medicine are the type I would recommend. If you are interested in that there are sources that can give you references for those type of docs in your area.I've seen a naturpathic doctor but she was fairly "green," if you will. I need to find someone who has more experience. I'd definately be interested to take a look at anything you could recommend. When I saw the nat. doctor, she did do a stool test and said that my GI Immune system was incredibly over active and she also said that my GI pulse (she said this was Chinese medicine) was very weak. She had me do an elmination diet, etc. I've just gotten to the point that I dont eat really at all because I dont want to have to deal with another pain attack that I could have avoided by not eating.I've also seen an accupunturist. It was very relaxing. I understand that one needs to continue to see an accupunturist in order to get the results desired. I have had 6 surgeries in the last two years and I'm tapped out financially due to the hospital bill so I've had to cut back on things that not covered by my health insurance. But again, if you have information, I'd love to have it! Thank you so much for your help!
    Anonymous 42789 Replies
    • January 27, 2007
    • 06:47 PM
    • 0
    Flag this Response
  • Lex,Ask to be seen by a gastroenterologist. My husband has Crohn's Disease (part of the IBD family) and some of your symptoms sound similar to his when he's having a flare up. If you don't like your current doctor, fire him. Seriously, if we'd have learned this about 15 years ago, it would have saved my husband a couple of surgeries and permanent damage from over use of prednisone.I did see a gastroenterologist after my doctor decided she didnt want to deal with me. He is the one that ulitmately started all the tests and determined my gallbladder needed to be removed. When that didn't help, he referred me to the University Hospital where I saw another gastro. doc who did the sphincter of oddi surgery. During this surgery, I woke up half way thru (I have an extremely high tolerance for medications). Anyway, the new doc that I am seeing in three weeks is an Interist who works at the University Hospital. My goal is to see her and hopefully make her my new Primary Care doctor and also get the referral to the Digestive Health Center where there are teams of docs (gastroenterologists, internists, etc) who work on your case.I'm sorry to hear about your husband. I hope he is in remission now. Thanks for the feedback! :)
    Anonymous 42789 Replies
    • January 27, 2007
    • 06:54 PM
    • 0
    Flag this Response
  • Do you live near a big city? It's possible there is an alternative school there who treat patients for reduced rates...worth looking into. Especially an acupuncture or naturopathic school. Also, call some clinics and ask if they have reduced rates and/or sliding scale fees. I have NEVER turned down a patient because they couldn't afford treatment. Any good practitioner should do the same. Just because insurance doesn't cover alternative medicine doesn't always mean you can't get treatments. I've done trades and payment plans at my clinic. Getting back to your diet and helping your symptoms...if you visit www.wholeapproach.com you can print out a recommended food list which is not as limiting as it sounds. And if you haven't already please add a good quality probiotic and take this daily. Best of luck.DOM
    acuann 3080 Replies
    • January 27, 2007
    • 07:05 PM
    • 0
    Flag this Response
  • Do you live near a big city? It's possible there is an alternative school there who treat patients for reduced rates...worth looking into. Especially an acupuncture or naturopathic school. Also, call some clinics and ask if they have reduced rates and/or sliding scale fees. I have NEVER turned down a patient because they couldn't afford treatment. Any good practitioner should do the same. Just because insurance doesn't cover alternative medicine doesn't always mean you can't get treatments. I've done trades and payment plans at my clinic. Getting back to your diet and helping your symptoms...if you visit www.wholeapproach.com you can print out a recommended food list which is not as limiting as it sounds. And if you haven't already please add a good quality probiotic and take this daily. Best of luck.DOMI started probiotics several weeks ago and it seemed to make me very sick. I spent all day in the bathroom throwing up after I took those pills. I take a lot of vitamins, etc. because I know that I do not eat enough to get the nutrition I need. Do you think it's possible that I got sick because I hardly eat and take too many pills? That was my guess! I will check out the website you listed. Anything that helps, even just a little bit, is worth checking out to me! :) Thank you for your feedback, I appreciate it!Lex
    Anonymous 42789 Replies
    • January 27, 2007
    • 07:11 PM
    • 0
    Flag this Response
  • I'm sorry to hear about your husband. I hope he is in remission now. Thanks for the feedback! :) Thanks, I appreciate that. Glad to hear you're going to a university hospital. Those places have some great thinkers (and tinkers) and they do a world of good. We were lucky to have an awesome gut doctor and surgeon when we lived in Houston. Austin, not so much, but his current GI guy is ok and his surgeon was great. Eric's missing about a third of his small intestine and half his large due to surgery for Crohn's. Before we got married, he had a doctor nearly kill him - all this guy would do was bump up his prednisone. We were in the process of switching doctors when Eric ended up in the hospital with half his large intestine dead - he'd have died if he hadn't been in the hospital because shortly after he was admitted, it ripped open. That was about 15 years ago. Things have changed a lot in that time. Most importantly, we learned to take charge of his treatment where we could and be responsible for recommending new treatments to his doctors.
    bugdog 14 Replies
    • January 27, 2007
    • 07:19 PM
    • 0
    Flag this Response
  • Most importantly, we learned to take charge of his treatment where we could and be responsible for recommending new treatments to his doctors.I read some excerpts from Dr. Oz and Dr. Roizen's book: Finding Doctor Right. It bascially said the same thing, that we are responsible for taking an active part in our health care and this means finding the right doctor. I'm sorry to hear that the doctor 15 years ago had no interest in making your husband better. I feel I am experiencing the same things with my current doctor. She actually said to me when all this first started that she would like to give me drugs (I cannot remember what she gave me now as I've been on so many different drugs) to see if they would work before doing tests to find out what was wrong with me. I suppose this should have been my first clue that she is less than desireable as my doctor. I feel that its my own fault, in a way, as I didnt push hard enough. Now I'm so worn out its hard to push, but I dont have a choice. I am so tired of being sick. My quality of life is not what is was and I know this is taking its toll on my personal relationships. But I'm doing my best to remind myself that doctors are not the 'final answer.' They dont know everything. Alternative health options are good, too. I need to keep an open mind, but also be very firm and take a stance for my own well being. Hopefully, some day soon, I will have the answers I need. I'm not hoping that its IBD or anything else, for that matter. But I'm hoping for a diagnosis that will lead me to a treatment to at least make daily life bearable.
    Anonymous 42789 Replies
    • January 27, 2007
    • 08:02 PM
    • 0
    Flag this Response
  • There seems to bne many many people suffering from the same or simular symptoms. There a 5 or 6 at the top of the Can't get... list right now. Please check some of these for simularities.Real Dr House?Severe Abdominal PainHelp for my 5 yr old daughterand several more.
    Anonymous 42789 Replies
    • February 7, 2007
    • 08:41 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.