Empathic Narrative of a 35 year old UC Patient

This current case report shows the empathic narrative of a 40 yr old male in his own words, on his 15 years journey with Ulcerative Colitis

"What can be more painful than having a disease well diagnosed, but not responding to any treatment? And when it combines with having to consume endless medicines and spending hours together in the toilet with no improvement, its worse than a nightmare. My journey with Ulcerative Colitis was the same, past 15 years. It all started in the year 2004, when I had regular episodes of abdominal pain, followed by bowel evacuation with blood and mucous. When I consulted a local hospital, I was put on a bunch of medicines without any proper diagnosis. Symptoms went on increasing day by day. I then consulted a gastroenterologist, who performed Colonoscopy, and gave the diagnosis of Ulcerative Colitis. Chills went down my spine when I have read about the disease over internet. 

I was already suffering with neck pain, lower back pain and headaches for years, and this added up now. I was started on steroids and few other medications. The doctors believed that the painkillers (NSAID) which I used continuously for my pains could have possibly triggered this. No dose of steroids gave me any relief, so were other drugs. I went on changing doctors for opinions, to check whether the diagnosis or the treatment was going well or not. It only made things more complicated, as every doctor asked for a series of fresh investigations before commenting anything. Any little variation in food used to trigger severe episodes of mucoid stools and abdominal pain. Headaches were a regular menace. Any oral medication for one issue used to trigger another problem.

My family life and social life got badly affected. The need to rush to toilet frequently made me stick to home, unemployed. I tried working from home for a while, but I was in a state of mental depression thinking round the clock about the disease, and reading about it. I was in a feeling of becoming a financial burden for my family, after which I silently went on consuming steroids and other medicines, probiotics and immunosuppressants from 2004 to 2016. Ten years have passed away with endless endoscopies, colonoscopies, biopsies and blood tests. Everything was pointing towards the same diagnosis. I had to undergo blood transfusion too in the middle, as my Hemoglobin levels have fallen low. It alters between 6-8 gm. Moving out of home was a herculean task. 

On advise of a friend and in search of cure with a hope, I retorted to Ayurveda treatment in the year 2016. I was evaluated and advised a few medications and therapies/treatments to be undergone. As I was skeptic towards AYUSH systems (for the bad experience I had with Homoeopathy), I was given contacts of other patients of UC at the hospital. It’s only after speaking to them, I could get courage to proceed further. Things went well for 2-3 years, and as my abdominal pain and episodes of stool evacuation reduced greatly, I was optimistic. Its then that things started to go out of the track again. Slowly my symptoms went on increasing day by day, and accordingly necessary changes were made in my treatment schedule, but in vain

I was back to the state of mental depression, when one day the treating doctor said I may have to restart modern drugs for a while to control acute episodes. I was greatly depressed, not only because of this, but on seeing other patients getting cured. I didn’t know what was going wrong in my case. There were many sleepless nights, thinking and reading a lot about this disease, and searching for a possible cure, but in vain. The worst phase of my life started in the year 2020, wherein I started to spend 4-6 hours in the toilet. I never expected that my health condition could detiorate to such extent. No medicine was working, and slowly suicidal thoughts took over my mental status.

At this moment again, I have approached another hospital on the advise of the Doctor treating me, and they planned to start a drug called Azathioprine, only after using steroid for a week. Cursing my fate, I have started it again.... "

By the patient's Ayurveda Physician:

On the evening of 5th day after starting steroid, the patient fell down unconscious while walking around casually. He was immediately rushed to a hospital, and on the way had a seizure activity.  CT Brain revealed Bifrontal hemorrhagic Infarction. Necessary management was initiated. He continued to be in vegetative state with no significant response. Re evaluation with MRI Brain revealed extensive cerebral edema, and he was planned for craniectomy. As the financial burden went on increasing, he was shifted to a Government Hospital, and there the patient finally lost his fight.