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My Crohn's Story - From US to India

Hi!! My name is Harshad and just joined this forum. I am diagnosed with Crohn's and would like to share my story with all of you.

I was in US studying my masters when I was diagnosed with Crohn's in Jan 2013. It all started with bloody diarrhea. I underwent colonoscopy and was diagnosed with Crohn's. I had never heard about this disease and doctor said there is a medicine for that so I didn't even do any research on it. I took Lialda (Mesalmine) as well as Corticosteroids. Soon in 5 months I started feeling better and stopped my medicine on my own.

I graduated and started my job in Feb 2014. Everything was going well but then in July 2014 I started having bloody diarrhea again. I thought this was due to my irregular food habits had no idea that Crohn's is back. I took over the counter medication till August but didn't work out for me.

In August 2014 my health started deteriorating faster and I lost a lot of weight and had unbearable rectal pain. Soon I saw blood and yellow liquid coming out of rectum unnoticed. It used to visible from outside with a bloody patch on my pants which was naturally uncomfortable for me at work place. I was dumb I didn't go to doctor even after this.

Then on September 12, 2014 I went to a Gastroenterologist in Huntersville (NC). I was in great pain. He checked me and immediately asked me to undergo colonoscopy and CAT scan. After my colonoscopy he said there is a inflammation in small intestine and rectum but only a CAT scan will clear the findings. I did the scan and results were out in an hour.

I had developed large perirectal abscess. I got a call from doctors office saying I have to get admitted immediately and undergo an incision and drainage surgery the same night. I underwent two incision and drainage surgery with placement of Seton in a matter of 3 days. My gastro doc started Prednisone on me as well as Lialda. But my condition was getting worse day by day. Gastro doc said it looks like Prednisone and Lialda are not working on you, so the only option we have for you is Remicade.

Soon I started feeling better. The surgeon told me that I have to undergo Fistulotomy as I had also developed a Fistula. During my stay at hospital I took a lot of heavy painkillers like Morphine and Oxycodone. I never had such kind of pain before in my life. I have a special ability to stretch my pain.

I am very sensitive person, I used get anxious even when a nurse used to touch me. Doc said I am a 10 year old boy in a 27 year old body and he was really caring about me as I had no one in United States. My parents were back in India and I was all alone and on my own.

My awesome Gastro even helped me getting my parents come to US.

By December 2014 I had started my Indian food which my mom made for me and I was cleared for Remicade after a CAT scan.

In January 2015 I started Remicade. It really worked on me and within 48 hours I was on my feet. I was on bed on my stomach since September 2014. I was very happy.

As I had no one to take care of me in US my Gastro doc suggested me to move back to India as I will have my parents to take care of me if something goes wrong again.

By this time I went into depression as I had lost my job and had to return India leaving my dreams of settling down in US. I had to leave my Mercedes which was everything to me. I was devastated. I moved back to India in Feb 2015.

After reaching India my health started getting better at a faster rate. I believe its bcoz of the food plan I was having. The only pain I had was of rectum coz of the incision. I also gained weight and reached to 155 pounds.

I got in touch with a gastro doc in my home town and he advised me to continue Remicade. Crohn's is rare in India but UC is common. May be due to hot weather and different kind of bacteria in the environment. No one knew about it even some doctors.

In India we have alternative medicine known as Ayurveda. I talked with my doctor about it and he cleared me to go for it. I started Ayurveda medicine and it's been 4 months now. I also underwent a 7 day Naturopathy treatment at an Ayurveda Center at the foothills of Himalayas. It was awesome.

Currently I am still on Remicade and will take my 6th dose on August 19th.
My food plan has helped me immensely to get over this disease. After all its all about your food. Everything starts in stomach.

Food is the key. Remember your brain is connected to your stomach and vice versa. Indian food really helped me.

So this it, After 12 months of pain I am now on normal routine and looking for a job. I am reading a book which tell us about our food and its really helpful as it also has scientific evidences as reference which helps me in cross verifying.


Thank you so much for taking out your time to read my story
Lots of Love and hugs
Harshad
 
Hi,Harshad you've had a rough time mate, but I'm so glad you are now much better. Keep up the good work and keep healthy, sending love and best wishes...Mandy . PS good luck with the job hunt :)
 
Hey mandyk,
Hope you are doing awesome

Thank you so much for taking your time out and reading my story. And thank you very much for your wishes. It's nice talking to you.
Warm Regards,
Harshad
 
Hi Harshad, thanks for your reply, yes I'm quite well at the moment, my Crohns is behaving at the moment,I had ileostomy a year n half ago, had it reversed 6 mths ago and all has been good so far. Hope you continue to have good health too. It's a pleasure talking to you, all the way over in India, isn't it great how easy it is to connect to people all the world....take care of yourself and I'm here for a chat or advice if
needed.wishing all the best for your future :)
 
Hi Harshad,

I am glad you are doing good. I am also suffering from Crohn's and my doctor prescribed me to use either Remicade or Humira. Right now I am still thinking which one to use.
I came to know that both these medicines are pretty costly. Currently I live in California and these two medications are covered by my insurance. But after 1 year, I need to come back to India. And I am worried about the cost of these medicines in India.
Since you are using currently Remicade, can you let me know the cost of these two medications in India and also let me know is there is any health insurance plan that covers these two medications.

Thanks
Anand
 
Hi Anand,
Thanks for reading my post. I wish you good luck get better soon. Yes both Remicade and Humira are very costly medicines in UD and India. I wont be able to give you any info about Humira coz I never used it but can tell you about Remicade.

Remicade is available at a retail price of Rs.41000/- per vial in India. If you buy directly from the company they give you at a discounted price of Rs.34,000/- per vial.
I have no knowledge about health insurance plan of some kind in India coz I never went for it. In case you find something please let me know too.

Thanks and Regards, Harshad
 
Thank Harshad for details.
Can you give me the company details where you purchase the Remicade. Please share the contact number or email id or any website where we can purchase it online.
 
Sure Anand,

Please find the following details:

Naresh N. Nair
Area Business Manager – Janssen India | Immunology | Mumbai BO, Mahim |.: [email protected] |' +91 93 222 555 23
Johnson & Johnson Limited, Mahim, Mumbai.
 
Hi Harshad, I just happened to read your story. You've been through a lot. I hope moving back to India has helped you a lot now and you feel real better soon :)

Take care
Aarthi
 
Thanks for taking out your time Aarthi, Yes things are not that smoother but yes much smoother than before. I am used to the pain now :p, I distract myself from the pain.
 
Hi Harshad,
I am also from nagpur.
I was diagnosed with crohn's disease back in 2012. i was taking remicade and unfortunately i had formed antibodies to remicade and then this year january i started taking HUMIRA. so far its been helping me.
My concern is my visa is expiring next year and will be going back to india. You mentioned that you are in india and taking remicade. I want to know how soon you take remicade in india? also did you get chance to explore insurance options there?
I am trying to see if this is not end of the world for me since insurance won't cover for humira in india that too when its pre-existing condition.

awaiting your reply.
thanks,
Sarvesh.
 
Hi Sarvesh,
I wish you good luck get better soon. Yes both Remicade and Humira are very costly medicines in both US and India. I wont be able to give you any info about Humira coz I never used it but can tell you about Remicade.

Remicade is available at a retail price of Rs.41000/- per vial in India. If you buy directly from the company they give you at a discounted price of Rs.34,000/- per vial. It comes from Pune or Banglore, so should reach within 48 hours. Plus there are no infusion centers here in India, you have to go to your gastro doctor to get it infused.

I have no knowledge about health insurance plan of some kind in India coz I never went for it. In case you find something please let me know too.


Thanks and Regards,
Harshad
 
Hey Harshad,

Great to hear your story man. Great you are in remission. I too am studying in uni in Bangalore,India currently and pursuing cricket professionally here. Was diagnosed w Crohn's in 2011 and started on Remicade around 2014 have been in remission ever since. I am covered back in Dubai where my parents are but have been researching about remicade in india. It is extremely expensive for the medication here and pretty much all insurance companies, to my knowledge atleast, do not cover autoimmune disorders. I was wondering how you manage to afford it and if you have any advice for a college student here looking to work soon on how I could possibly afford the medication?

Thanks and look forward to your response
Nikhil
 
Hi Sarvesh,
I wish you good luck get better soon. Yes both Remicade and Humira are very costly medicines in both US and India. I wont be able to give you any info about Humira coz I never used it but can tell you about Remicade.

Remicade is available at a retail price of Rs.41000/- per vial in India. If you buy directly from the company they give you at a discounted price of Rs.34,000/- per vial. It comes from Pune or Banglore, so should reach within 48 hours. Plus there are no infusion centers here in India, you have to go to your gastro doctor to get it infused.

I have no knowledge about health insurance plan of some kind in India coz I never went for it. In case you find something please let me know too.


Thanks and Regards,
Harshad
Harshad,

Can you give me few doctors name who would do remicade infusion? I haven’t had much success finding a doctor in Lucknow.
 
Indian diets are so healthy for sure all that turmeric and curry and such. Pray Humira continues to work for you. Do you mind saying a typical daily diet you have. I'm going to start a strict one soon and taking a lot of notes. Thanks
 
Hi Harshadh,

Hope you are doing better in india. currently I am in USA I was also diagnosed with crohn's in 2016. Every year I get sick with symptoms I go india and take treatment there then I get better and move back to USA. I will be fine few more months and my symptoms starts again. Now I am in dilemma whether to move India perminantely or not. Based on my financial crisis I want to stay here for atleast few years but this crohn's is not letting me stay happy here. I have a better feeling that if I am in India this symptoms may not come back may be because of our food, environment etc. what about you? are the symptoms coming back since you moved to India.
 
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