I went through five years of test after test being told that everything was "fine". Each time I heard that, it made me less inclined to disclose what I was experiencing. I became convinced that I wasn't really sick and that my misery was my own fault. (I ate the wrong thing, I was too lazy to exercise or cook nutritiously etc etc.)
...tests are only part of the picture. The most important piece is the patient.
I paid for my embarrassment and my unwillingness to be seen as a whiner. I'd rather be seen as a complainer and get appropriate treatment than to accept their findings when they are at odds with your experience.
There's a lot of good wisdom in what belleenstein says. I too have gone 7 months round and round with my GI and two colorectal surgeons. I had a diagnosis of IBS 22 years ago after an endoscope/colonoscopy that revealed nothing. Twenty two years of anti-diarrhea medicines and the constant pursuit of nailing down what I was doing to cause this infliction.
A CT scan revealed probably Crohn’s with inflammation, elongated colon and a couple other medical terms. An endoscope showed gastritis, although I never suffered from heartburn, with other complications. The colonoscopy removed four polyps; two massive and precancerous and the follow up removed two more adenomas. But none of this is why I finally went to seek medical assistance.
For a year I had an abscessing fistula that would be very painful and eventually burst. There would be quite a bit of blood and puss. I got creative about how to keep from being publicly humiliated if it burst at an inopportune time. I’m 42, so I thought it was something you got when you were older and it was embarrassing, so I kept it to myself.
It all came together in January. I couldn’t live like this anymore. My GI ran more tests but not immediately or thoroughly. He sent me to two different Colorectal Surgeons who said come back when it abscesses, but it was never a good time when it did. They all pretty much wrote the fistula and bleeding off as Type I hemorrhoids. After months of this I thought I was going crazy, that it was in my head until I experienced the pain. I don’t whine but I felt like a big hypochondriac. I too became reluctant to reveal anymore symptoms or experiences.
I finally two weeks ago went to a large leading hospital where the colorectal surgeon actually talked to me for a good long time. He then patiently let me show him precisely the area and he felt indentions/pouches which led him to schedule surgery. A week later he opened the fistula, (which happened to be two areas connected by a tunnel), validating what I had fought seven months to convince my GI, two colorectal surgeons and a handful of ER personnel. It was there and growing.
Remember that this disease has no test that is 100% accurate and simpler solutions or causes are what most doctors try first.
Someone here at the onset of my experiences suggested getting a GI that specializes in IBD and its patients. Don’t let a long drive stop you from seeking the best. Don’t let your doctor cut you off mid-sentence, make sure they listen correctly to what you are saying and make sure they are providing maintenance for your complaints while still being proactive about what is causing them. Sometimes it seems that you get more attention and care from a server in a restaurant than a doctor, but one gets paid a heck of a lot more money.