I'm a newbie to the board, but not to ENDLESS "tummy troubles"...Wanted to post a "cliff notes" version of my problems -- if anyone has any advice/help it would be greatly appreciated.
about 20 years ago (I was in my early 20s) I began having lots of upper digestive troubles -- under a boatload of stress at the time, I was told I might have an ulcer --no tests... just Zantac (prescription at the time). Not much help, problem went on for years, eventually turned into what was then diagnosed at IBS...lots of D alternating with C (in C mode I would feel great...D mode... in bed sick). Just eventually lived with all this with not much relief.
Fast-forward to March 2007...I became serious ill with a horrific case of what I assumed was stomach flu (other family members became ill with same symptoms a few days later). Fever, chills, DDD...Everyone recovered, but I did not. I began having explosive D every morning almost every day since -- never have gone to bathroom normally. During this same time I began having these all night bouts of severe upper back pains (that's going to come back to haunt me later!) -- that lasted on and off about a month then disappeared. Doctor at the time said IBS...not interested.
2008 new doctor...still explosive D almost every time, always starting in the morning. I looked into celiac or gluten allergies and got myself tested from EnteroLab. Tests there indicated slightly high gluten sensitivity (mine was 17/cutoff level was 10), and borderline egg/milk allergy. When on elimination diet...not much relief, but some improvement. If I ate anything other than gf rice rolls...DDD big time. Doctor did bloodwork, said not to celiac, get off the diet. Got worse. Got myself tested for parasitic infection -- negative. Nighttime upper back pains came back big time. Back to doctor...ultrasound ordered. I was LOADED with gallstones.
Consult with surgeon...wouldn't do surgery because of the D (18 months straight at that point). I could barely eat at this point because of the excruciating upper back pains. On to gastroenterologist (took over a month to get an appt. ) Gatro doc turned out to be a complete idiot -- I had every symptom of a nearly ruptured gallbladder... brown urine, I actually looked yellow, I could barely stand up. Because my gallbladder pains were not in the upper right side (never were) didn't believe the gallbladder was a problem. Ordered every test in the book...went back to family doc who ordered a HIDA scan. Had scan on a Thurs. results Fri. -- gallbladder was about to blow. Surgery on following Mon.
Four days of no D and then right back where I began. It's been a year and if anything the D is worse. Doctor is now of NO help...just annoyed I'm still having problems.
Tried Questran...3 days blew up with gas and the third day massive D. Tried calcium carbonate no luck. I live on Imodium but am sick with D almost every morning -- sometimes before I eat, sometimes right after breakfast or after I take a sip or two of liquid. I often feel SICK...generally sick enough at times to just crawl into bed. Symptoms always go away by late afternoon Doctor now thinks I may have an intestinal infection -- wants me to try Flagyl 2X for 20 days even though I keep testing negative for any kind of parasitic infection.
Also tested for IBS from Prometheus Labs and was retested for parasitic infection. For reasons I can't fathom at this point my doctor will not sit down with me and tell me the results of either test. As I mentioned she is annoyed nothing has worked and is actually getting hostile (just what I need -- YIKES!). I've come down with numerous skin, and tooth infections during the past year and have been on Levaquin 4 times. I can't get to a dentist because of the D...she doesn't get it. I wanted to wait until I got the results from Prometheus before I took the Flagyl. In the meantime I got another tooth abscess...trip to doc...she literally became "crazed" when she found out I hadn't started the medication...I hesitated as I react pretty badly to most meds, so I thought it wise to wait for confirmation from the tests…but I guess that was a big "no, no".
I'm at a complete loss at this point. I don't know whether to start the Flagyl or see if I can get another opinion first. I sent away for my test results and am hoping if I put the results up someone can give me an idea what it all means. I feel horrible most of the time, need massive dental work done (that's another story), constant D in the AM, and have a hostile doctor as an added bonus.
Anyone have any thoughts about where I should go from here? So sorry my "cliff notes" version of my health problems turned into "War and Peace", but any advice would be greatly appreciated.
My Prometheus test results seem to be what the doctor based her infection diagnosis on -- as I said, she WON'T discuss this with me, anyone with any clues as to what these results mean???
Thanks so very much!!
47% probability IBS
Everything seemed in normal range EXCEPT
IL-1B (interleukin-1 Beta) <279.5 fg/ml
Reference Value 279.5 -1358.6 fg/ml
ASCA-IgA (Anti- Saccharomyces cerevisiae Antibody) <12.0 EU/ml
Reference value <20 EU/ml
CBirt (Anti-CBirt Antibody) 32.8 EU/ml
Reference Value <21.0 EU/ml