How many people in US.Is there any Indian ??

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cdinhyd
Regular Member


Date Joined Sep 2006
Total Posts : 101
   Posted 7/21/2015 12:59 AM (GMT -6)   
@santosang

My CD is caused due to huge diet changes while studying for my MS in USA in 1980s. How many times have you undergone colonoscopy? From my experience too, Gastroenterologists from India in USA are also aggressive in their treatment. How effective is Humira in your case? Will you be able to taper off Humira?

You can find out my email address from members list on this forum. You can contact me, and I can give you the details that I learned. The disease is detrimental to daily life anywhere in the world.

Best wishes.
Male India 52 years Diagnosed CD in 1990 Fistula surgery 1988
Mesacol, Folic Acid, Lethyrox , recent Iron Infusion, Vegetarian

jaya
New Member


Date Joined Oct 2004
Total Posts : 13
   Posted 7/24/2015 8:12 PM (GMT -6)   
cdinhyd, how are you ? we communicated briefly back in 2010! good to hear from you again.

To others: my story follows similar pattern: came to US for grad studies, diagnosed with CD just before defending my PhD thesis (cleared it!), was kept on steroids, and now on 6MP and doing well.

I spent four years in college in Upper Michigan (where you don't get sun for months at a stretch some years!), and followed a pretty unhealthy life style (coming back from lab late night for dinner!). Back then options were limited for vegetarians so I did not eat out much, but what I did eat was definitely not healthy.
I can relate to some of the comments in this thread, how depressing it feels at times. In the first few years after diagnosis it was hard, but things did become much better with time. I learned my lesson and changed my lifestyle and diet.

I borrowed some ideas from Ayurveda-recommended-life style (like when to eat, what to eat, etc) and this definitely helped. Some herbs (Amla + Ashwagandha) also helped. Mung daal kichdi is my go to comfort food, especially when recovering from illness.

I have also been doing some basic yoga asanas, some spiritual chanting, and that has been a big help.

I believe if we hang in there, find out what works best in our specific case, and keep learning, that will help.

cdinhyd
Regular Member


Date Joined Sep 2006
Total Posts : 101
   Posted 7/25/2015 2:31 AM (GMT -6)   
@jaya and @pdpkind

I am not exactly feeling well - I am struggling with continuous stomach pain and weakness, sometimes unbearable.

My story is like as yours - being vegetarian, lived on microwave pizzas, cheese sandwiches and unhealthy food habits while studying in USA seems to have caused my CD.

@jaya Are you taking Amla and Aswagandha regularly? I am afraid that if I try any such alternatives, my symptoms will become worse - specifically abdominal pain, blood in stools etc.

Are there no side effects on being 6MP? How long have been on steroids and on 6MP?

@pdpkind My doctor did not prescribe so far anything beyond Mesacol 400 (5ASA Mesalamine). Humira may not yet be an immediate option in India right now.
Male India 52 years Diagnosed CD in 1990 Fistula surgery 1988
Mesacol, Folic Acid, Lethyrox , recent Iron Infusion, Vegetarian

jaya
New Member


Date Joined Oct 2004
Total Posts : 13
   Posted 7/25/2015 1:27 PM (GMT -6)   
cdhyd, sorry to hear that, hang in there, things surely will get better.

I was on steroids on and off for several years and my current GI wanted me to start Humira. After considering my options, I asked him to put me on a trial of 6 MP. I did read up a lot about 6 MP especially in this forum--looks like for some people it worked well, and they were on 6 MP for several years, but others had to stop it in a matter of months because of side effects.

My GI did order some lab tests which would indicate whether or not 6 MP would benefit me. (My GI is really thorough on these things).

It's been about one year, that I am on 6 MP and my GI has been monitoring my liver enzyme levels. In my case there were mild side effects at first, but they went away after a week.

In India, it is probably easier to access 6 MP that Humira, but it is extremely important to have your liver checked on a regular basis (every 4 weeks). Let us be clear on this one: the side effects can occur any time, and they can be serious.

In my opinion, it is better to start herbs when you are in remission. Yes, I take Amla and Aswagandha regularly. They are slow acting, and work well in the long term. Both are safe herbs to begin with, but
Amla is even more safe, probably the safest and most gentle herb in the entire Ayurvedic cabinet.

I always thought of Mesacol as a very low potency drug. Can you request your doctor for more options like Prednisone, or, 6 MP ? My understanding is that these are available in India, but I could be wrong.

jaya
New Member


Date Joined Oct 2004
Total Posts : 13
   Posted 7/28/2015 8:29 AM (GMT -6)   
pdpkind: sorry to hear that. Hang in there, I am sure Humira and Pred will get you through
to remission.

cdinhyd
Regular Member


Date Joined Sep 2006
Total Posts : 101
   Posted 7/31/2015 6:06 AM (GMT -6)   
@pdpkind:

Sorry to hear about hospitalization and medication. I too feel helpless with my abdominal pain and weakness.

Hopefully, you will be better soon.

@jaya:

Mesacol is just maintenance dose, not a remission drug. Pred and 6MP equivalents are widely available here, not sure whether my doctor will bump me to these medicines.

What makes you certain that Amla and Aswagandha are helping you with Crohn's?
Male India 52 years Diagnosed CD in 1990 Fistula surgery 1988
Mesacol, Folic Acid, Lethyrox , recent Iron Infusion, Vegetarian

my12yearson
New Member


Date Joined Aug 2015
Total Posts : 4
   Posted 8/2/2015 5:47 AM (GMT -6)   
New member!
My 12 year old son was diagnosed with Crohn’s in March 2015. Mild symptoms were seen at least 6 months before the actual diagnosis. Doctors put him on Dezicol, didn’t work. His symptoms are getting harsh with multiple bathroom visits full of mucus and blood. He is anemic too and I give him iron pills twice a day. There is some weight loss as well. Now Dr. wants him to start Remicade ASAP. I am hoping that it will work!

We are from India and have been in N. America for last 15+ years.

I did try to eliminate few food items like cheese and give him lactose free milk. I can really use the help on diet, please.

His symptoms were controlled during past school year. I am also worried what will happen once school reopens? He loves to play sports and now there is no energy to do so!

Has anyone tried Homeopathic medicines for Crohn’s / IBD?

cdinhyd
Regular Member


Date Joined Sep 2006
Total Posts : 101
   Posted 8/3/2015 5:17 AM (GMT -6)   
@my12yearson:

Sorry to hear that your son is diagnosed with Crohn's at such an early age, like another lady's son here on this thread. I have tried homeopathy and ayurveda but did not help. I stopped them.

Either diet or medicine, it is very difficult to say as what works for one patient may not work for another patient.

Was your son diagnosed with colonoscopy? Was there a huge change in diet that may have caused Crohn's?

Best Regards.
Male India 52 years Diagnosed CD in 1990 Fistula surgery 1988
Mesacol, Folic Acid, Lethyrox , recent Iron Infusion, Vegetarian

my12yearson
New Member


Date Joined Aug 2015
Total Posts : 4
   Posted 8/3/2015 7:48 AM (GMT -6)   
For some reason colonoscopy (very few ulcers) / MRI didn't show much of inflammation. It was later wireless capsule endoscopy which captured the inflammation of small intestines. By this time, his symptoms of mucus and bloody stool were also more prominent.

For all these years, I have tried to balance the diet with some Indian / American foods. We do not eat much of cheese, but in recent years, my son had developed taste for cheese! I didn't boil the milk as he doesn’t like the smell of boiled milk, which I think, may have contributed to his disease!

jaya
New Member


Date Joined Oct 2004
Total Posts : 13
   Posted 8/3/2015 9:14 AM (GMT -6)   
cdinhyd: sorry to hear that in your case, Ayurveda did not help.

I hope you find something that works, or may be another doctor who will prescribe other meds ! Probably you have a strong reason to stick with your current doctor ?

In my case, back when I started 6 MP, I saw improvements in some areas (nausea, stomach pain etc) and was able to weane off of prednisone. Similarly, I saw improvements in digestion, energy levels few weeks after starting herbs. The hair loss that I have been having (probably 6 MP side-effect) stopped as well.

You are right, each one of us is different, and what works for one, may not work another. Even
if something works, we may not always certainly know why and how it works.


my12yearson: sorry to hear about your son. I hope Remicade works for him. You are doing a good job trying to find out about diet etc. Hopefully you will find things that will help your son.

I have not tried Homeopathy and personally I do not believe in it. I do think dietary changes, nutritional
supplements, and herbs will be of help in some cases.

Post Edited (jaya) : 8/3/2015 9:34:00 AM (GMT-6)


momof8yroldboy
New Member


Date Joined May 2015
Total Posts : 16
   Posted 9/2/2015 11:42 PM (GMT -6)   
@cdinhyd: Our doctor is considering Remicade as my son's fecal calprotectin is 920 (too high). He isn't still in remission. My concern is.., we have no plans of staying in the USA. Husband came here for a project. We might have to move back to India in a couple of years. Does insurance cover remicade in India? Do you have any inputs on that?

cdinhyd
Regular Member


Date Joined Sep 2006
Total Posts : 101
   Posted 9/4/2015 6:40 AM (GMT -6)   
You do not depend on insurance companies in India for any kind of treatment. They do not cover pre-existing conditions, and cover only if you are hospitalized for more than 24 hours. Even then, many conditions are excluded.

That said, you can inquire about Remicade availability in your city in India. I believe it is available.

Best Regards for your son. Is it possible at some time in future to be off Remicade completely?
Male India 52 years Diagnosed CD in 1990 Fistula surgery 1988
Mesacol, Folic Acid, Lethyrox , recent Iron Infusion, Vegetarian

momof8yroldboy
New Member


Date Joined May 2015
Total Posts : 16
   Posted 9/17/2015 1:22 PM (GMT -6)   
Thanks a lot cdinhyd.

kavya
New Member


Date Joined Apr 2015
Total Posts : 6
   Posted 1/27/2016 2:30 PM (GMT -6)   
mal said...
Hi,
I'm wondering how many people have this crohns .We move here in US about 7 yrs back from India .In India no body knows(most people) about this crohns.

When i talk to my father in India about my husbands crohns he said come here back,he said I don't know that there is any disease like this which has no cure .He belive that now a time every disase has a cure this make me cry ....we are Indians and why this happen to my husband.



I told my father if we come back then we can't afford remicade but he not understand he said once you come this crohn's will go away by itself.But I login in this site some forums give me strength .As i look that we are not alone here this give me power .


hi

how was hsi problem now?iam also in US and recently my husabdn diagnosed with CD,your opinion would be great help?

Ritz
New Member


Date Joined Sep 2017
Total Posts : 4
   Posted 10/2/2017 4:15 PM (GMT -6)   
HI

I'm asian Indian was dx with Crohns last week after colonoscopy. I had severe diarrhea and cramping for two months. I will be starting Humira as soon as its approved by my insurance. I was on prednisone for 2 months. I will be going for capsule endoscopy.

I wanted to know how long one has to be on humira and about food..Can you eat everything. As per my GI , I can eat everything as I was eating before. I was also told by someone that with CD you suffer all your life?

I would be interested in knowing how other's are coping with CD.

Thanks
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