Discussions By Condition: Medical Stories

Lots of diagnosis no answers

Posted In: Medical Stories 13 Replies
  • Posted By: Sick Nan
  • June 24, 2008
  • 02:56 AM

:confused:I have been diagnosed with fibromyalgia, interstitial cystitis, chronic gastritis, GERD, and now ulcerative colitis. I have had so many tests, blood work, cultures, you name it.

The gastritis and GERD were so bad I agreed to surgery after the tests showed the inflamation was eroding my esophagus and the medication was not helping. Three weeks after surgery I was readmitted to the hospital passing blood. A colonoscopy revealed ulcers and bleeding all through the colon. Now after three weeks of medicine the bleeding is back. All byopsies and cultures are negative but I keep having inflamation in my insides with no reason why.

I was told today that I probably have an autoimmune disease that is fighting against my own body but they aren't sure what to do. I see another doctor tomorrow but don't know where to turn.

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13 Replies:

  • If you have inflammation in other parts of your digestive system other then the colon, then you have Crohns disease and not UC. For great support and answers to your questions you should visit: www.healingwell.com Good Luck!
    Anonymous 42789 Replies Flag this Response
  • Thanks for the suggestion but tests for Crohn's were all negative.:confused:Sick Nan
    Sick Nan 4 Replies Flag this Response
  • Time to find a good alternative doc to help with your problems. I highly recommend finding a good acupuncturist who is also a certified Chinese herbalist. This is so very helpful for gastrointestinal issues!!! I had severe pseudomembranous colitis and feel it would have become much worse had I not gone to my Oriental Medical doc. After two weeks of treatments and nasty tasting herbs:p, I was 95% better. I cannot recommend this form of treatment highly enough. IMO allopathic medicine does not treat GI issues well. Please consider this form of medicine - there are very specific herbs to help with blood and mucus in the stool, as well as helping autoimmune dysfunction. The next thing I recommend is called NAET. NAET is noninvasive and can help with autoimmune problems as well. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • :confused:I have been diagnosed with fibromyalgia, interstitial cystitis, chronic gastritis, GERD, and now ulcerative colitis. I have had so many tests, blood work, cultures, you name it. The gastritis and GERD were so bad I agreed to surgery after the tests showed the inflamation was eroding my esophagus and the medication was not helping. Three weeks after surgery I was readmitted to the hospital passing blood. A colonoscopy revealed ulcers and bleeding all through the colon. Now after three weeks of medicine the bleeding is back. All byopsies and cultures are negative but I keep having inflamation in my insides with no reason why. I was told today that I probably have an autoimmune disease that is fighting against my own body but they aren't sure what to do. I see another doctor tomorrow but don't know where to turn.have you been checked for c/diff bacterial infection,this infection destroys all the good bacteria in your system,leaving only bad bacteria,which can cause all kinds of problems in your colon,intestines,stomach,includingbleeding, inflamation, diarrhea,it can destroy your immune system,deplete your body of electrolytes. and even death
    RECONMARINE 2 Replies Flag this Response
  • All cultures for bacteria of any kind have been negative. This week they are doing more blood profiles and possibly more byopsies next week.
    Sick Nan 4 Replies Flag this Response
  • :confused:I have been diagnosed with fibromyalgia, interstitial cystitis, chronic gastritis, GERD, and now ulcerative colitis. I have had so many tests, blood work, cultures, you name it. The gastritis and GERD were so bad I agreed to surgery after the tests showed the inflamation was eroding my esophagus and the medication was not helping. Three weeks after surgery I was readmitted to the hospital passing blood. A colonoscopy revealed ulcers and bleeding all through the colon. Now after three weeks of medicine the bleeding is back. All byopsies and cultures are negative but I keep having inflamation in my insides with no reason why. I was told today that I probably have an autoimmune disease that is fighting against my own body but they aren't sure what to do. I see another doctor tomorrow but don't know where to turn.you dont seem to have the symptoms for autoimmune which arefever,wheezing,cough,rash,diarrhea,haemoptysis (coughing uo blood)
    RECONMARINE 2 Replies Flag this Response
  • have you been checked for c/diff bacterial infection,this infection destroys all the good bacteria in your system,leaving only bad bacteria,which can cause all kinds of problems in your colon,intestines,stomach,includingbleeding, inflamation, diarrhea,it can destroy your immune system,deplete your body of electrolytes. and even death Yes! This is what I had, and I thought I was going to die:confused:. Again, chinese herbs cleared this up for me. Clostridium difficile is a very specific stool test - it has to be requested specifically. I would just make sure the docs tested for this. Lastly, since you have inflammation but no infection I suggest ruling out celiac disease. Either way, I still highly recommend acupuncture and Chinese herbal medicine to help you. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Marie, So were mine. It can take years to have it diagnosed. If you have ulcers in any other part. of your intestine that are chronic. It is most likely Crohns...
    Anonymous 42789 Replies Flag this Response
  • My latest blood profiles for Crohn's and other inflamatory bowel diseases were all negative. I think they would probably give up on tests if I didn't keep passing blood. Now it's wait and see what they want to doi next week.
    Sick Nan 4 Replies Flag this Response
  • Can you please list all of the meds you are currently taking? DOM
    acuann 3080 Replies Flag this Response
  • Elmiron--interstitial cystitisLialda---colitisEsian----HRTLovastatin-cholestralLisinipril--blood pressureMilnacipran-study drug for the fibromylgia--those doctor's keep very close tabs on me. They said no one in the study has had any of these problems caused from the medicine. My other doctors have ruled out that possibility as well. It does work wonders for fibromyalgia. Now they say the colitis could be ischemic caused by low blood flow to the colon as a result of my surgery for the reflux.
    Sick Nan 4 Replies Flag this Response
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  • Hi. New to the forum but have a suggestion that will help you. Google "inclined bed therapy" does not cost anything and may well solve many of your problems. (lot of reading but worth understanding how something simple can make such a profound difference to a persons health) Andrew :confused:I have been diagnosed with fibromyalgia, interstitial cystitis, chronic gastritis, GERD, and now ulcerative colitis. I have had so many tests, blood work, cultures, you name it. The gastritis and GERD were so bad I agreed to surgery after the tests showed the inflamation was eroding my esophagus and the medication was not helping. Three weeks after surgery I was readmitted to the hospital passing blood. A colonoscopy revealed ulcers and bleeding all through the colon. Now after three weeks of medicine the bleeding is back. All byopsies and cultures are negative but I keep having inflamation in my insides with no reason why. I was told today that I probably have an autoimmune disease that is fighting against my own body but they aren't sure what to do. I see another doctor tomorrow but don't know where to turn.
    Andrew K Fletcher 2 Replies Flag this Response
  • Well could be cause by a protozoa infection.
    LINENUP 122 Replies Flag this Response
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