<p>"For eight years, Jessica Terry suffered from stomach pain so horrible, it brought her to her knees. The pain, along with diarrhea, vomiting and fever, made her so sick, she lost weight and often had to miss school.</p>
<p>Her doctors, no matter how hard they tried, couldn’t figure out the cause of Jessica’s abdominal distress.</p>
<p>Then one day in January, Terry, 18, figured it out on her own.</p>
<p>My last year of college was spent in a hospital lab setting where medical technology students would spend part of the day in lectures and part of the day in the laboratory learning different techniques. Everyone had to do an end of the year research project and present it in the students and department heads. Because of my Italian background, I chose to research Thalassemia. This was at a time when separating gene markers and such was quite time consuming and rather new. I used my blood as one of the samples and surprisingly, I discovered that I have Thalassemia Minor. It made for a very interesting and successful outcome of the project.</p>
<p>I had a problem in the 1990s which caused me tremendous pain. The doctors had the usual approach of pain killers and surgery if the pain killers weren’t enough. I found someone else with a similar problem on a Usenet group and built a device from his description with parts from Home Depot and the problem was 95% gone in one day.</p>
<p>You can buy this device from any medical supply store today but back then doctors weren’t aware of it in general. Someone in my office had the same problem a few years later and I told her what I did and she did something similar and solved her problem. Her doctor didn’t have any solutions for her.</p>
<p>There’s a lot of knowledge out there that doctors transmit to us after a diagnosis. Doctors can’t know everything. If you’re good with a search engine or have access to research databases, you may be able to diagnose a problem or at least learn where the state of the art is with regard to your problem. In other cases, you might be the first person discovered with the problem (I have a niece like this).</p>
<p>I have been donating money and time to CCFA for several years-
It’s ironic that in the same area where Mike McCready has helped to bring more attention to this disease that Jessica Terry’s Dr.s missed it.
[Crohn’s</a> & Me - Q&A with Mike McCready](<a href=“http://www.crohnsandme.com/pearljam/]Crohn’s”>http://www.crohnsandme.com/pearljam/)</p>
<p>She had been scoped. She was looking at her path slides from her scope bx’s, ones that had been looked at before and the granuloma had been missed. </p>
<p>No test is 100%. Nothing has 100% specificity and sensitivity. There are problems that are difficult to diagnose. If this bx was taken early in the disease, she might have had a single granuloma present on the entire set of slides. Inflammatory bowel disease is not always a straight forward diagnosis to make. Usually the diagnosis if found eventually. Endometriosis, interstitial cystitis and even celiac disease often exhibit symptoms for some time before the diagnosis can be nailed down. As I read the post, I though it was going to be celiac disease she found.</p>
<p>NotMamaRose, she was scoped - that is why she had tissue slides in the first place. The pathologist missed it and I guess it wasn’t visible enough for the GI doctor to see. How she got her own tissue samples from the pathologist, in this day and age, I don’t know, but she did. Someone had sent me this story several days ago as one of my kids has Crohn’s and it really upset me as this is a a difficult-enough disease to get diagnosed as it is. We had our own aggravation when DD, displaying suspicious symptoms, was scoped and the doctor did not biopsy because he didn’t “see” anything. Thus the DX was delayed by several months while she got sicker and sicker. A friend of mine, whose kid was DXed very young and is active in support groups, told me that bright, young women often get misdiagnosed by male doctors and are told they have IBS and need to relax. That is what happened to my kid. She was attending an Ivy League school and the doctor just assumed she was too overachieving and needed to take a Yoga class or do something to relax. People with more chronic symptoms – as opposed to an acute emergency – can often go years without a proper diagnosis. It took us three GI doctors and two years before we had a DX.</p>
<p>doesn’t surprise me. My friends son at the age of 19/20 had severe bladder pain frequency(interstitial cystitis) the Urologist told him he needed to get a girlfriend. Not jokingly either.</p>
<p>My son had a perforated appendix and the doctor diagnosed epididymitis (inflamation of the spermatic cord). Or, as my son later put it, “He thought there was something wrong with my dick.”</p>
<p>I diagnosed my own mono senior year of high school during biology when we were looking at blood cell types under the microscope. I was not yet clinically ill, and was puzzled by all the monocytes. A few days later, I got sick. And, yes, I did become a doctor.</p>
<p>I “diagnosed” both my kids with their chronic illness long before any MD would put a name to it–it was process of elimination that spanned so many years. We finally got it officially confirmed after 4+ years & countless docs & specialists. I didn’t use a microscope but just kept track of all the symptoms which we described ad nauseam. They saw the pediatrician, allergists, pediatric GIs, geneticist, cardiologist, mulitple psychologists & psychiatrists, pediatric pulmonologists, speech therapist, respiratory therapist, sleep specialist, ENT and more. None of us are interested in going into medicine but we are very grateful for the docs who stuck with us through the challenges.</p>
<p>I don’t care what any doctor says, irritable bowel syndrome is not about inability to relax! It’s also not a real diagnosis, only a description, hence, the vague name. I know plenty of people who suffer from it, and they span the whole spectrum of personality types.</p>