Steven D. Hylton, aka Psyche0

Steven D. Hylton Your Webmaster is a 34 year old gay man who has a passion for music and refuses to grow up, witness the Peter Pan costume! I earned a Bachelor of Arts in Psychology from UVa and have over 7 years of experience as a Social Worker and Mental Health Case Manager. Unfortunately I was forced to retire in 1997 due to the severity of my Crohn's Disease and Enteropathic Arthritis.

I was diagnosed with CD at the age of 18 and spent most of the next few months going in and out of hospitals until they finally placed me on a regimen of prednisone. In 1984, I developed an interovesicular fistula that eventually required surgery. I had approximately 18 months without any symptoms of CD following surgery, though I did pass my first kidney stones during that period. When the disease came back in the Fall of 1987, I was again placed on prednisone. Shortly thereafter, I experienced my only peri-rectal fistula and began developing severe symptoms of Enteropathic Arthritis.

Over the next 10 years, I survived with only one hospitalization due to an obstruction, but the damage my bowel had already taken along with on-going flares and constant steroid use was becoming more of a problem. My success as a Mental Health Worker was severely hindered by medically necessary absences and the addition of narcotic pain pills to help deal with my arthritis pain which was getting worse. More frequently, I was either unable to do some things because of the medicine or at home in bed. I gave up my apartment and moved in with friends so that we could share expenses and household chores. I spent most of my weekends sleeping, getting up only to go buy groceries on Saturday and watch football on Sunday. And it wasn't enough. So I retired in September 1997 and applied for Social Security. Since then, I have learned that the long-term steroid use has caused some damage to my bones as well -- my teeth are slowly disintegrating, and I have constant pain from joint aches and what appear to be stress fractures.

In the summer of 1998, my local GI specialist told me of a study being conducted out of a clinic in South Boston, VA -- about 60 miles east of my home. I got involved, and drove down to South Boston 3 days a week for 8 weeks with a number of special visits in between so that I could get -- potentially -- the new drug being developed by Isis Pharmaceuticals (see www.isip.com ) for treatment of CD. The process took a little over three hours each day, two for the infusion, then an additional hour of monitoring vital signs. In the meantime, we began tapering my prednisone until I was off of prednisone for the first time in 11 years. Miraculously, I didn't get sick. Looking at other participants in the study, the results were very encouraging. The half-point data was excellent with a success rate of about 34%, success being defined as a successful wean from prednisone with no flare-ups for about six months or clinical remission. Unfortunately, the second half of the study was less than stellar with a success rate of only 12%. At this time, Isis has decided not to pursue FDA approval for using this drug to treat CD, but it is still testing the drug for treatment of UC, rheumatoid arthritis and other autoimmune disorders, so the drug could become available yet.

Since that time, I have seen a lot of symptoms and difficulties with my digestive tract. My doctors theorized that my bowel and colon had already been severely damaged by the CD, surgery and long-term steroid use interfering with my normal bowel functions and bowel motility. In other words, I now have Irritable Bowel Syndrome on top of CD. This theory seems to have been proven in April 1999 when I had my second surgery. This time, they had to perform a bypass around a small portion of terminal ileum that kept collapsing and causing blockages. I still face the problems with IBS, but lab results continue to show that I am not having active CD at this time. I have to consider myself relatively lucky to have been in remission for so long.

I finally had my hearing before the administrative law judge regarding my eligibility for Social Security disability benefits in June 1999 and began receiving payments in November. This has eased some of the financial burdens, but I have had to take an increasing role in helping my family out. About the same time I began to receive payments, my father had another stroke and is still highly incapacitated. Someone has to be near all the time to help him get around and care for himself.

CD has been hard on me, but I have never given in to the disease. Every setback has meant taking a hard look at what new limitations there might be on me because of this disease and learning ways to work around those limits. I am a survivor, and I know I will always land on my feet. Although Lord knows there's enough padding on my fanny that it would actually be safer for me to land there! Hey -- just so long as I can get back to my feet again, who cares!

Contact Information:

Preferred Email: psyche0@digdat.com
Alternate Email: ispoilboys@oocities.com, xpsyche0@aol.com
AIM: psyche0AIM or xPsyche0
On the Web: www.digdat.com/~psyche0/index.html