Dear all,

I am new to this site and want to thank everyone for their candid thoughts and experiences. This journey becomes much less daunting when you realize that many others have helped pave the road before you. I wanted to share part of my journey with you, as it parallels many of yours, but has some unique twists along the way. I apologize if this is not the appropriate forum for this discussion.

I was diagnosed with UC 6-months following some medical work I did overseas. After a seemingly long time of misdiagnoses and meaningless testing, I was diagnosed. I still remember the day I was given the diagnosis. The curse about being a medical person is that I was already calculating my annual mortality and complication rate. I made the decision early to not let the illness affect me in any way possible.

The next 6 years of my life were the most grueling mentally and physically. Living by the mantra: "You are only sick if you act sick", I completed my medical training and medical residency. I fought tirelessly to maintain anonymity with respect to my illness. Only a very small circle of people who 'needed to know' were told about my diagnosis. I minimized my illness to my friends and colleagues. Few knew my daily struggles with constant pain, urgency, frustration, and hopelessness. I told myself that I was making this decision because people could only 'hurt' me, and letting people in could only have negative consequences. Really, I was scared that by letting myself accept my disease, I was really admitting to limitations and failure. So I quietly persisted. I completed my residency training, graduating at the top of my class. I also never missed a day of school or work due to my illness (despite many mornings wondering how I would last the day). Never until this past December.

My mantra took a toll on me mentally, physically, and emotionally. Outside of work, I slowly became introverted, emotionally drained, and irritable. I was also very isolated, refusing to share my fears and emotions with those close around me. Instead, I was left to ruminate in my own thoughts.

Having a foot in both camps, as a member of the medical community as well as a patient was a double-edged sword for me. In the first few years of my illness, I would read any medical information about IBD and UC that I could get my hands on. From medical textbooks, journals, to conference abstracts; I was determined that I would 'stumble' upon a cure. I also read books on gut health, nutrition and homeopathic treatments. Medically, I went through the same group of 'usual suspects' as many of you: 5-asa, imuran, even remicade. I kept hoping I would find the 'silver bullet'. Instead I found predisone, which became a crutch rather that bullet. After nearly 4 years of continually trying to wean it from my system, my world as I knew it came crashing down in December 2007.

For the first time in my illness, my disease took hold of my professional life. I was hospitalized with a severe flare. After 2-weeks of intravenous steroids and hospitalization, I was looking at surgery. I was devastated, not only because of the upcoming surgery, but also because I had to let people into my life and my illness. I was terrified as to how they would respond. I was convinced that I would be rejected both personally and professionally. I was wrong.

The people in my life both personally and professionally stepped up in a big way. I had unanimous support and encouragement. With their help, I sailed through the surgery (I left the hospital 3 days after my surgery, determined to be home for christmas) and returned to work after about 3.5 weeks. I also was able to complete my grueling set of board examinations this past May. It was a bittersweet end to the chapter of my life consumed with constant struggling, fear and hopelessness.

Now I am further on my journey through the j-pouch experience. Because of my semi-urgent initial surgery, my surgeons have staged my j-pouch surgeries over 3 steps. I had my second surgery (creation of the j-pouch with a temporary ileostomy) this past July. The second surgery has been a bit tougher on my physically than the first one. I am still having lots of liquid pass through the ileostomy. I had a brief readmission for dehydration (if anyone knows any good ways to slow the output that would be much apprecated- I am taking large doses of immodium at present!). I am looking forward to the final step next month and to starting a new chapter in my life.

So what did I learn from my experiences? Like the title of my article, I refused to slow down treating my illness as an unwanted hitch-hiker in my path to success. I felt that slowing down and taking time for myself was a sign of failure. I refused to let others travel with me along my journey. If I could change things 6-years ago, I probably would.

The present is predicated on our experiences of the past and I am happy to be on the road I am on, now taking time for myself and listing to the wise advise of others (loved ones always know best). I am also grateful to hear from the experiences of other, making the journey much less fearful.

I want to sincerely thank you for allowing me to share part of my journey with you.

Wishing you the best of health.

AM

Tough story. I am glad you had the support you needed through this point, and I hope you have it the way.

Keep this website in mind, and visit it often. It has helped me a lot.