Crohnies -
Thank you for all of your stories and ongoing education, this group has been an incredible resource for me without even posting. I have been browsing the site since February 2010 and decided it was time to share my frustrating search for a diagnosis.
In September 2008 at the age of 27, I contracted a food borne illness that took its toll on me totaling 7 days of hospitalization and 6 full months of recovery. During that time I developed symptoms of Reactive Arthritis (ReA), which we all thought would resolve without treatment. The ReA and recovery continued to wreak havoc on my digestive system so a colonoscopy was ordered, inflammation skip lesions were found and the GI Physician mentioned Crohns after the procedure. However, pathology proved to be inconclusive and it was decided I did not have Crohns. The GI Doctor shifted from a tentative Crohns diagnosis to IBS, leading me to believe he was only guessing. After many other tests and an IBD serology, all of which came back normal, I quit searching for an answer and experienced a 'normal' year in 2009.
However, that all changed in February 2010 as I began to experience severe nausea, cramping, mucus, diarrhea (3-4x's per day), join pain, and eye pain. At first glance it appeared to be a mixture of ReA and Crohns, so I contacted a GI Doctor who was a friend. He admitted me to the hospital for observation and testing, which included a Stool Sample, Lab Work, CT Scan with contrast, Colonoscopy, and Endoscopy. The stool sample indicated leukocytes and the colonoscopy displayed inflammed skip lesions that led my GI friend to think Crohn's disease. However, the pathology sent to Mayo Clinic came back as inconclusive, demonstrating inflammation not defined as Crohns. Hence, we were quickly back to the IBS diagnosis.
During this same time my large joints and back began to experience increasing pain, exhibiting symptoms of chronic ReA. So, I connected with a rheumatology group in Houston, TX (4 hour drive) that are supposedly the 'experts' on spondyloarthritis. They agreed that the chronic ReA symptoms could be causing the joint pain and Crohn-like symptoms. During this time I was placed on a 3 month low-dose steroid taper, which helped initially but all benefits quickly faded. During that time all lab work, x-rays, and one MRI were normal leading them to believe my symptoms were too mild to employ the use of any disease modifying drug. I could not disagree more as there was/is nothing mild about my symptoms.
Fast forward to April 2011 and after a steroid taper that ended in January, I am back to experiencing the excruciating nausea and cramping that is always worst in the mornings. My GI Doc believes that it is still IBS and had me try two weeks of the anti-biotic Rifaximin, no change in symptoms. The rareness of ReA makes this entire puzzle (my life) more difficult to solve. So, my next step is to see the Rheumatologist who works at the same hospital as my GI Doc, in hopes that they will take a team approach to my health. In the end, I have done tons of my own research on my symptoms. The research helped me locate a clinical study from the early 1990's that performed a colonoscopy on a test group of chronic ReA patients. It was discovered that 67% of those patients presented with pathological signs of Crohns. From my perspective, my symptoms feel like the Crohns I have read about in these forums, but my physicians are hesitant to treat me for Crohns without hard pathological evidence.
So, where do I go now? I have contemplated the Mayo Clinic or Cleveland Clinic, but still paying on $7,500 in medical bills from last year makes that a difficult choice. If you have already been in a similar situation or know of someone who has what would you do to get an answer? Is there a physician, hospital, or clinic within the U.S. that has reputation for diagnosing hard cases?
Ultimately, I want a diagnosis so we can determine a course of treatment because it is more realistic to get somewhere when I know where I am going.
Thank you for all of your stories and ongoing education, this group has been an incredible resource for me without even posting. I have been browsing the site since February 2010 and decided it was time to share my frustrating search for a diagnosis.
In September 2008 at the age of 27, I contracted a food borne illness that took its toll on me totaling 7 days of hospitalization and 6 full months of recovery. During that time I developed symptoms of Reactive Arthritis (ReA), which we all thought would resolve without treatment. The ReA and recovery continued to wreak havoc on my digestive system so a colonoscopy was ordered, inflammation skip lesions were found and the GI Physician mentioned Crohns after the procedure. However, pathology proved to be inconclusive and it was decided I did not have Crohns. The GI Doctor shifted from a tentative Crohns diagnosis to IBS, leading me to believe he was only guessing. After many other tests and an IBD serology, all of which came back normal, I quit searching for an answer and experienced a 'normal' year in 2009.
However, that all changed in February 2010 as I began to experience severe nausea, cramping, mucus, diarrhea (3-4x's per day), join pain, and eye pain. At first glance it appeared to be a mixture of ReA and Crohns, so I contacted a GI Doctor who was a friend. He admitted me to the hospital for observation and testing, which included a Stool Sample, Lab Work, CT Scan with contrast, Colonoscopy, and Endoscopy. The stool sample indicated leukocytes and the colonoscopy displayed inflammed skip lesions that led my GI friend to think Crohn's disease. However, the pathology sent to Mayo Clinic came back as inconclusive, demonstrating inflammation not defined as Crohns. Hence, we were quickly back to the IBS diagnosis.
During this same time my large joints and back began to experience increasing pain, exhibiting symptoms of chronic ReA. So, I connected with a rheumatology group in Houston, TX (4 hour drive) that are supposedly the 'experts' on spondyloarthritis. They agreed that the chronic ReA symptoms could be causing the joint pain and Crohn-like symptoms. During this time I was placed on a 3 month low-dose steroid taper, which helped initially but all benefits quickly faded. During that time all lab work, x-rays, and one MRI were normal leading them to believe my symptoms were too mild to employ the use of any disease modifying drug. I could not disagree more as there was/is nothing mild about my symptoms.
Fast forward to April 2011 and after a steroid taper that ended in January, I am back to experiencing the excruciating nausea and cramping that is always worst in the mornings. My GI Doc believes that it is still IBS and had me try two weeks of the anti-biotic Rifaximin, no change in symptoms. The rareness of ReA makes this entire puzzle (my life) more difficult to solve. So, my next step is to see the Rheumatologist who works at the same hospital as my GI Doc, in hopes that they will take a team approach to my health. In the end, I have done tons of my own research on my symptoms. The research helped me locate a clinical study from the early 1990's that performed a colonoscopy on a test group of chronic ReA patients. It was discovered that 67% of those patients presented with pathological signs of Crohns. From my perspective, my symptoms feel like the Crohns I have read about in these forums, but my physicians are hesitant to treat me for Crohns without hard pathological evidence.
So, where do I go now? I have contemplated the Mayo Clinic or Cleveland Clinic, but still paying on $7,500 in medical bills from last year makes that a difficult choice. If you have already been in a similar situation or know of someone who has what would you do to get an answer? Is there a physician, hospital, or clinic within the U.S. that has reputation for diagnosing hard cases?
Ultimately, I want a diagnosis so we can determine a course of treatment because it is more realistic to get somewhere when I know where I am going.
