I am an Indian, settled in Japan. I am blessed with one big, happy family; a loving husband, one son & daughter, my mother-in-law, my brother-in-law & his family, & my own mother & brother’s family living nearby. I always felt, I had everything one could wish for. But, things started to change in August, 1985.
On 11th August 1985, I suffered from a severe asthma attack. As we had been extending our house structure for more room, our house was filled with dust and a strong odour because of the heavy construction. I went to my regular doctor immediately, who was regularly treating my asthma & he gave me a medication in an intravenous drip. While my breathing smoothed gradually, I felt a sudden pain in my lower abdomen which worsened with each passing minute and hour. I felt a sudden urge to go to the bathroom. I went with the IV still in my arm and had a bowel movement. The stool was not extraordinary, but a strange smell I had never smelled before in my life gave me reason to be afraid of something unknown. I was in bad shape and couldn’t drive myself back home. The doctor called my husband and informed him about my situation & I was needed to be taken to a bigger hospital in emergency. My husband took me to a nearby hospital named Hokuto Biyoin, where I spent the night in fear and uncertainty about what was wrong with me. I felt scared, bearing a strong pain in my stomach, all whilst dealing with the stress and fear that my kids were small and I was not able to be with them. My son was 7 and daughter was 3 years old at the time. Due to all this fear & pain, I couldn’t sleep.
Somehow by the next evening, I was able to come back home with some lingering pain which I tolerated as I wanted to be with my family more than giving in to my pain and staying hospitalized. This was the Japanese Obon holiday period when all shops and businesses were closed including hospitals. My extended family and around 15 of our close friends had planned to spend the holidays on an island at the time. Our family including my kids and some friends had left two days before to go to the island as originally planned. I was stuck with my husband at our home on doctor`s orders which stated that I could only go for one night in my severe condition. The vacation itself was of no interest to me at that point except for the fact that I could not be with my young son and daughter all the while suffering from the mysterious pain.
After my short trip, I visited my asthma specialist doctor again who introduced me to a hospital near his own clinic, Teishin Biyoin Hospital. I was admitted there on the 2nd of September 1985; an unexpected HELL was waiting for me. I was already having bloody stools before the hospitalization, but now I was profusely bleeding every time I went to the toilet and losing weight rapidly. The doctors conducted various tests and colonoscopy in the hopes of finding out what was wrong. This was my very first colonoscopy and my worst experience; one which I might write about in more detail sometime later. Within 20 days of hospitalization, I had lost 15 kg and too much blood. I wasn’t even able to get out of my bed and walk up to the portable toilet right next to my bed in the room. Two nurses had to support me to get to the toilet which was literally within an arm’s length.
Then on the 22nd of September, God sent an angel in the form of a doctor, who was a family friend coincidentally visiting Japan for a family wedding. He paid me a visit that night around 1:00 am and immediately told my husband to transfer me to a bigger city or university hospital as this was not a common disease and needed immediate and serious attention. He said clearly that it was either Crohn’s or Ulcerative colitis which was VERY uncommon in Japan at the time. Most doctors had not even heard of the disease let alone treat it. By the next morning, I was transferred to the famous Kobe Shimin Byoin Hospital. Somewhere in my mind, I felt a little relieved thinking that I was in safe hands at last. I would be diagnosed properly and they would know how to fix this, like every other disease out there.
Little did I know of the gravity of the situation I was in.
Stage one: The diagnosis
24th September 1985, the Doctor told my husband I had “kaiyouseidaichoen”. It did not hit us what it was (at least not immediately), as we had never heard of this word before. With some research, we got it – “ulcerative colitis”. What the hell does this mean? Only the same fear and anxiety remained within.
The next day, my husband flew to Hong Kong to get some medical books in English, and came back with a bag full of books which I still keep on my shelf to this day.
Now that doctors knew it was #UC, the treatment was started immediately.
Stage Two: The Steroids
During that time, I was unable to even move my limbs and was in a miserable condition, and then I realized I had not seen my kids in many days. I was in my bed with so many tubes going in and out of my body, I was hardly able to speak or look around my room. The only thing I could feel was pain in my abdomen and the weightlessness of my own body. Through all the pain, my husband used to bring our kids to the hospital hoping to make me feel better. I was shocked to see my daughter hiding her face against my husband’s shoulder, to avoid looking at me. Perhaps, she was shocked to see me in that condition, tied to my bed with so many tubes and equipments beeping all around. I was shocked too and cried a lot as all I wanted was to hug her. My son was in shock too but was slowly absorbing the fact that his mom was seriously sick. His second grade teacher was very nice, gentle, and caring. She used to take him to school church to pray for me. Perhaps, his prayers with his tiny, little hands folded in front of the altar were heard and therefore, I am here, writing this today.
My steroids journey started with approximately 8 months of hospitalization, with several ups and downs, high dosage of steroids via catheters, and about 5 to 6 months of an intravenous high caloric diet; and all this while, the regular tests continued. During high doses of steroids, getting discharged from the hospital was not a possibility. Not until it was below the 25 mg range. Every time I had bloody stool the steroids dose was increased back to 60 mg. THAT meant another extended month of hospitalization. It was devastating. VERY painful and scarring emotionally. The more I missed my kids, the more my condition worsened. It was becoming clear that my mental condition and the stress of being away from my family were playing a major role in my relapses.
At least that was how I felt.
Stage Three: Coping with my disease and real life.
Finally, I was able to come back home, which was celebratory after 8 long months of being hospitalized. It took me time to settle back into my daily routine which was definitely not the same anymore. With steroids and other medications that continued for another three years, I had a lot of side effects; Headaches for very long durations; Hair loss and excess hair on the body; Irregular periods; Weight gain; Bloating; Emotional, angry outbursts.
But I was happy to be home with my kids. Every few months I would experience flare ups, and too often had to be hospitalized for weeks because of the increased dose of steroids I had to take again and again. This had to end somewhere. I have experienced many mishaps during this period which I will write about some other time in more detail.
I have always wondered how I got this illness, with different theories coming to my mind every single time. Now having traveled back through my painful memory lane, I realized that there were a few days when I thought I wouldn’t survive this horribly painful illness. But the thought of my children and my family always gave me the will and strength to fight for my life. After all these years, perhaps I can teach any doctor what ULCERATIVE COLITIS is. I am going to have to live with Ulcerative colitis whether I like it or not. Thus, I have had to look for ways to deal with it and love “myself with Ulcerative colitis” which is not easy.
I have a long way to go, but my first year with this disease was definitely the toughest on both me and my family and one that I will never forget.