To start this blog I’d like to share my story with you. After I was initially diagnosed I felt that I would never be able to lead a normal life. Now I want others who suffer from these challenging diseases to know that they are not alone and that there is hope for a better future.
I was initially diagnosed on August 9th of 2001 at the age of twenty-three. As I look back I remember all of the medications I was given, the hospital stays, the late nights spent in the emergency room, the surgeries, and most of all the pain and suffering.
This disease not only caused physical pain for me but it also tormented me mentally. I quickly fell into a deep depression but pretended it was not there. And even worse, I wasn’t the only one suffering. My parents and my siblings endured this pain with me and were heartbroken as they watched me deteriorate physically, mentally, and spiritually.
My doctors assured me that they would be able to control my symptoms with medications and that I would be able to lead a normal life. I was started on a regimen of Asacol, a drug that is commonly used to treat the symptoms of UC. After six months of being on Asacol there was still no improvement in my condition. My doctors decided to try other drugs and over the next three months I took approximately 10 different prescription medications. Not one of these medications worked for me and I was still suffering from the same symptoms I had when I was first diagnosed.
Naturally my parents began to worry and were losing their faith in western medicine. In June of 2002 they took me home to India to seek other forms of treatment. Once there a homeopathic doctor took me off all my medications and we began using alternative forms of treatment. I was taught how to change my diet to accommodate my disease, how to meditate so that I could control my stress levels, and how to exercise after eating to help my body better digest the food it consumed. I was also put on one “medication” that did not have any man made compounds in it and was completely natural. I was on this schedule of treatment for only a few days when I saw a dramatic improvement in my condition. My symptoms virtually disappeared and I began to feel like a normal person again.
Three weeks later I returned home from my trip and went to see my gastroenterologist for a routine check-up. He was concerned that I wasn’t on any medications and insisted that I stay at least on Prednisone (steroid) for maintenance purposes and to keep me in remission. I started taking Prednisone around the beginning of July 2002. Soon after my symptoms began to reappear only this time worse. I had a colonoscopy and the results came back showing that I had Toxic Megacolon. This is a condition that can be life threatening. As a result of this, on August 9th 2002, exactly one year after my initial diagnosis, I had surgery to have my entire colon removed. I remember, clearly, going to the hospital that day. I had never had surgery before and was terrified. I recall looking at my mom and dad as I was walking away with the nurse and saying to them, “it’s ok, I’ll be fine.” My operation lasted for nine hours. When I woke I remember my dad standing there with tears streaming down his face. I must’ve looked like I was in pain. I looked at him and said, “it’s ok daddy, it doesn’t hurt.” After that, my life was never the same again.
The feelings I had that day, physically and emotionally, are indescribable. After eleven days in the hospital I was able to go home, but I couldn’t take care of myself. At the age of twenty-four my mother had to feed me, help me use the bathroom, bathe me, and at times put diapers on me. More than anything else I was embarrassed and humiliated by my disease.
Six months after my surgery I was still having symptoms. Following numerous tests and procedures, including several colonoscopies, I was re-diagnosed with Crohn’s Disease in January 2003. This is a disease similar to UC but afflicts the small intestine and other parts of the digestive system.
Since August of 2003 I have had an additional nineteen surgeries and countless hospital stays for other complications due to Inflammatory Bowel Disease. In my surgeries were included the removal of bowel obstructions, removal of my gall bladder, placement and reversal of ostomies (bags worn on the outside of the body), and the scraping away of scar tissue. I also had minor surgeries for the placement of a Power Port, several PICC Lines, and feeding tubes. I became weak physically and discouraged mentally because nothing seemed to be working for me. My disease was out of control and I felt there were no options left.
Aside from the surgeries and procedures I was also diagnosed with other conditions that I still, at times, suffer from. Some of these conditions are either side effects of Ulcerative Colitis or Crohn's Disease or were caused by medications used to treat these diseases. These include:
Pancreatitis: An inflammation of the pancreas. This causes severe abdominal pain and usually requires admission to the hospital until symptoms have subsided.
Osteoporosis: A weakening of the structure of the bones. This usually occurs among older women who have already gone through menopause. I was first diagnosed with osteoporosis at the age of twenty-five.
Arthritis: Swelling and pain in the joints. This is also something that generally occurs among older people.
Anemia: I was diagnosed with anemia due to a deficiency of the vitamin B12. Because I became anemic I was required to get monthly IM injections of the vitamin.
Peripheral Neuropathy: This is a loss of sensation in certain areas of the body. I began to experience this in my feet and hands after being on a medication that my doctors now believe I am allergic to.
Epilepsy: I was diagnosed with epilepsy after having numerous, unexplainable seizures. I believe that this was triggered by high doses of medications I was on at the time of my diagnosis.
Infections: I acquired countless infections included a staphylococcus infection in my blood that spread to my heart and nearly took my life.
There were periods of remission where I would gain my strength back, when the depression would diminish, and I would feel confident about my future again. But these periods were short lived and I would quickly become depressed again. At times I felt like I had been robbed of my spirit. At this point I knew that my entire life was going to be changed and that I wouldn’t be able to have the future that I’d dreamed of.
I had no choice but to accept my disease. With the help of my family and loved ones I was able to regain some state of mental balance and clarity. I learned that whether I cried or laughed, at the end of the day I was still going to be sick. I didn’t want to spend my days in self-pity or fill them with misery. So I began taking things one day at a time and have learned to make the best of what I have.
Ulcerative Colitis and Crohn's Disease affect all areas of your life including having interpersonal relationships and raising a family. Living with Inflammatory Bowel Disease can be difficult, embarrassing and even humiliating at times. The most essential aspect of having control over this disease is accepting it. By accepting it yourself you allow others to become more empathetic and accept it as well.
I’ve also found that it is important to surround yourself with people that are going to have a positive impact on your life. I have parents and siblings that are loving, caring, understanding and compassionate. Even with all of the hardships and challenging experiences I've endured I feel very lucky to have the family that I do. Without their support I'm not sure I would have made it through all of this without losing my sanity. I am where I am today because of their selflessness and unconditional love.
I have learned and am still learning to lead a life with minimal stress, to eat right and to exercise in the best way that I can. I've also involved myself in support groups for people with Inflammatory Bowel Disease. In doing this I know that I'm not alone. There are others out there who are also suffering because of these diseases. Only they truly understand what I'm going through and are able to offer the kind of support you can't find anywhere else. I have made a firm decision that no matter what happens or how bad it gets I will not let this disease dictate my life.
I hope that this blog not only becomes a place of learning but also a place where you can come to find support. I will do my best to answer questions and make daily posts. I look forward to all of your comments and questions and to getting to know you!