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Crohn's Disease / Ulcerative Colitis Community
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Avatar universal

Seriously need help!!

For the past 5 years I have been dealing with attacks of varying intensity of nausea, abdominal pain,bloating and tenderness, vomiting, diarrhea, constipation, mucous, and fatigue. When I say "varying intensity" I mean from mostly symptom free to several days in the hospital.  I have had many ct scans, a pelvic MRI, 3 colonoscopies (although never during an attack), 2egd, ultrasounds, many blood tests, fecal tests, nuclear hepatobiliary scan, hydrogen breath test, and I'm sure others that I'm forgetting. In the testing they have found inflammation of my colon several times, an ileus, abnormal blood tests, some gas that is stuck but cannot be explained, my gallbladder is constricted, I have had c diff 2/3 times, a couple of ulcers, some polyps, as well as some other things I'm forgetting right now.  What they have never found is a cause for these awful attacks!! Although my primary dr thinks I have an atypical presentation of crohns,for which he treated me with prednisone and I felt the best I have in years,  the GI dr does not.  I am so very frustrated!! The GI dr is now treating me for small intestinal bacterial overgrowth (SIBO) which has yet to give me any relief.  I believe I may have SIBO, but if that was the only problem it would have gone away when I had previously been on antibiotics.  I am reaching out here trying to see if anyone else has a crohns diagnosis that took this long and this many tests??? The symptoms fit perfectly and as I said the prednisone made me feel so much better but the GI dr is convinced that's not what it is.  She said in so many words that if it's not SIBO then it's IBS.  To me IBS is just the diagnosis they give when they can't figure out what's wrong.  I don't have just occasional discomfort and diarrhea.  I have debilitating pain, constant vomiting and diarrhea when these attacks happen.  In between attacks I am able to function but still have pain, fatigue and diarrhea or constipation. Whatever this is, it has completely disrupted my life! I lost a great job because I had to call off so often and was often gone for more than 2 weeks after hospitalization. Now I stay home because I am afraid I won't make it to the bathroom in time or simply because I'm in too much pain or too tired to do anything.  PLEASE PLEASE RESPOND if you have any info that can help me!!! I am desperate to figure out what is wrong and get my life back!! Thank you for taking the time to read my "question" !
1 Responses
Avatar universal
I too have much of the same symptoms as you and remain undiagnosed.  I have received a great deal of relief by working with a very specialized nutritionist, who is wonderful.  I am currently out of work, trying to get my diet straight to work for my body and to rebuild my strength.   I feel certain I have crohns which is greatly irritated by foods.  I am lactose intolerant, had sibo, inflamation in small intestines, hiatal hernia, reflux, precancerous polyp, uncontrolled asthma, extreme fatigue.  Additionally, problems with my adrenal glands, liver and gall bladderand csr, which is a pocket of fluid behind my eye, causing retina detachment.  I also have a problem with grains and have a very basic paleo diet, which have greatly reduced symptoms.  
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