Ramesh B. Choudhari, 64 from Nagpur was not only afflicted with Ankylosing Spondylitis from a young age, but was diagnosed very late which led to fusion of his joints and consequent surgeries. But that did not stop him from working, and leading a normal life to the best of his abilities.
Please tell us a bit about your condition
I have been suffering from Ankylosing Spondylitis (AS) since 1972 ( my age was 14 yrs then) , but I was only correctly diagnosed in as late as 1997. I have had multiple flare ups of AS. The last flare up was in1984, which was so severe it had lasted for as long as 2 years and this had done the maximum damage to my joints. During this attack, I suffered spine fusion , TMJ (Temporomandibular Joint) Ankylosis Fusion and Bilateral hip and knee fusion and these rendered me completely helpless. I could not move at all, I could not even open my mouth and so had to be on liquid diet only. Fusion in the joints made me a disabled person. Gradually, with some movements and 3 operations, I am right now almost leading a normal life.
I have had TMJ operated 3 times and I also went through with a bilateral hip and left knee replacement at the age of 58.
Now I am leading almost a normal life, but I still have a spine fusion and I cannot bend down. I also have difficulties folding my knee after the replacement.
When were you diagnosed?
The correct diagnosis was in 1997 by an orthopedic surgeon, by which time I had almost suffered a fusion of joints.
What were the challenges of a late diagnosis?
At that time many doctors were not aware of an autoimmune condition as AS. There were also no doctors solely for rheumatic diseases, which were more often than not wrongly diagnosed as gonococcal polyarthritis, bone TB, Gout and rheumatoid arthritis. But if I had managed to get an early diagnosis, I could have taken some autoimmune disease tablets which are prescribed now, or I could have even got some physiotherapy done. But I went without any medication, and only received symptomatic treatment from doctors. So, my condition spiralled out of control.
How did you cope with it?
After my severe attack in 1984, I was totally bedridden. I could not move on my own, and I had to even take help to turn from one side to the other. So for me, it was 2 years of only pain and an endless wait. Gradually, when all my joints had gone into fusion, I gradually went into remission, because after all the joints had fused, the pain had become considerably less. I was gradually able to get out of bed and crawl from one place to another. When some strength started coming back to my joints, I took to crutches. Then I even started cycling. After this, I went for the TMJ operation. But even then I used to walk with a bent back. In 2016 I straightened a little. After the hip replacement ,I straightened up more.
What were the early symptoms of your condition?
It started with lower back pain, ankle pain, knee pain and even pain in the small joints of fingers, toes and wrist. The pain moved from one joint to another.
Is there a history of Ankylosing Spondylitis in your family?
Yes my mother had rheumatic disease but the condition was not so severe. And now my son also has Ankylosing Spondylitis.
What medications are you on?
I am on calcium supplements for the last 20 years as I had developed osteoporosis and I’m also taking Hypertension tablets after hip joint replacement. I take Zolodronic acid injection annually for osteoporosis.
Were there any side-effects of the medicines?
I had developed skin peeling off condition almost every where in the body when I was on heavy doses of steroids. A steady intake of painkillers has affected my digestive system and I have developed mouth ulcers as well.
As I was totally bedridden for a considerably long period, I had developed bed sores.
Long use of steroids has also caused early cataract for me.
Did you suffer from co morbidities? If so, how did you handle those?
No I did not have any comorbidities.
How did you manage the financial burden of the treatment?
Since I was on a training spell with the Railways, I initially got treated at the Railway hospital. But when I did not get much relief there, I shifted to Government Hospital Nagpur. But when my condition deteriorated further, doctors advised me to be taken home. My father being a Railway employee, he was looking after my medical expenses. But with increasing financial constraints, I had even shifted to homeopathy. I also had 2 Ayurvedic doctors visiting me, and they treated me for free.
What were the other challenges you faced and what is your advice to patients who face similar challenges?
AS has been a huge challenge in my life, and I have faced difficulties in every aspect of my life
- Education: I could not complete my education as there would be a gap every time I would get an attack.
- Job: There was a gap in my training period in Railway, but still I managed and rejoined even when I was not even able to walk properly. At that time, I used to walk with the support of my hands, crawling, and slowly as the strength came back to my legs, I would use crutches to stand and then use a tricycle to travel. So I have faced all these challenges, and yet continued with my job. I have faced all adversities with courage and a strong will power. Therefore, I would ask all AS warriors to never lose courage.
Have you learnt anything in managing your condition that you wish you knew before?
Had I known earlier that I would experience fusion of my joints to this extent, I would have gone for physiotherapy to maintain the mobility in my joints. Then I would not have had to go for joint replacements. I would also have started on calcium supplements much earlier in life.
What kind of specialists do you consult and how often?
I consult a doctor of internal medicine, and also my orthopedic surgeon to keep a track of my osteoporosis and knee replacement conditions.
Have you had to make some changes to your lifestyle because of your condition?
Yes I am not able to sit in the Indian style by folding my legs. So I have trained myself to stand for long hours. I was not even able to stand straight so I used to walk keeping one hand on my knees after my joint replacement surgery. I now drive a moped with side support wheels. I had to also change my eating habits, not to eat food which increases acidcontent in my body. I do yoga every day as well as strength improving exercises.
Have you tried complementary medicine or therapies, like homeopathy or yoga?
Yes I have tried ayurvedic treatment and homeopathy.I still do yoga exercises sitting on a chair as I cannot sit down. I feel homeopathy and yoga have helped me.
Has it been difficult emotionally to cope with your condition?
Yes it was very difficult, but my family has supported me to overcome all the pain and sufferings.
How has your family supported you?
The whole credit goes to my mother. If you see me alive today it’s because of her only. It was her courage and will power which kept me alive.. My condition was so bad that I could not even turn in bed. I would even do my motions in bed, and she would help me. And she never tired of helping me.
Did you see a counselor for support? Were you offered counseling by doctor?
No I didn’t take any counselor support but my friend used to come to give me counseling.
What was the hardest part of the treatment? And what kept you going?
I had a job. So I wanted to get better and have a proper life to look after my family.
Personal anecdote
I was appointed in Railway in 1982, got attacks in 1984 and I was totally bedridden for 2 years. All my major joints got fused and I was not able to stand. I used to move from one place to another by crawling, I thought of getting fitness certificate to rejoin my job in railway. I went to Railway Hospital Mumbai (Headquarter) and requested the Doctor to give me a fitness certificate to rejoin my job, The doctor asked me how I can give the fitness certificate to you to resume your job as you can barely walk and stand?
I replied that, if I can come to Mumbai in such a condition, I can also join work. Looking at my courage and determination to join work, the doctor gave me a fitness certificate and also a recommendation letter to my Manager in Nagpur to give me a sedentary job near my residence.
This shows that the world (Family, Friends, Doctors) can help you if you show courage and a positive attitude to fight back AS. And even medicines also work if you think in a positive way.
