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

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mal
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Date Joined Jul 2006
Total Posts : 63
   Posted 7/10/2008 9:01 AM (GMT -7)   
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 .
 

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 7/10/2008 9:13 AM (GMT -7)   
You are not alone. I am glad that you can come here to get support. Even here in the US a lot of us have family members who feel much like your father, the "oh, why don't you try this" and "if you only did that" and the best "maybe if you went to a therapist..."

I do not know the prevalence of the disease in different parts of the world, but it is occurring more often now. It may even be that they are just diagnosing better when they attributed it to other things before. It could be this strange new world we have created. (My sister, 10 months apart from me in age, has rheumatoid arthritis with gastric complaints.)

But I digress, are you in India now? Is your husband receiving treatment? What type?

Lastly, I send out my gratitude to all the spouses and family members who have lovingly cared for us (me) during times of deepest despair. I do not know what I would have don without my wonderful father, and great and loving husband.

mal
Regular Member


Date Joined Jul 2006
Total Posts : 63
   Posted 7/10/2008 9:19 AM (GMT -7)   
No I'm not in India .I'm in USA.His crohn's started in 2006 may try different medicines didn't work then remicade every 8 weeks then 9 weeks all things was fine but from last week he has right side pain and loose stools GI gave him entocort and again 8 weeks remicade.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 7/10/2008 1:24 PM (GMT -7)   
Hi. I'm from India, Chennai to be precise. My husband (who is American) has been diagnosed with Crohn's. My parents also were very confused about Crohn's - they actually went and consulted with a gastroenterologist in Chennai to understand more about the disease, so that they would better understand what we were going through. I would recommend that your parents consult a good gastroenterologist in India, to gain understanding of this illness, so that they come to the realization that this is not a disease that will vanish once you step back to India again.

Unfortunately for us, Crohn's is not a common disease in India - it does happen, but it is not common. However, there are people in India who suffer from crohn's disease - please do not believe that going back to India will somehow magically make the crohn's disease disappear - that's just wishful thinking. From what I understand from my parents, there are crohn's disease treatments in India, but the expensive drugs like remicade are harder to come by. I do believe that Johnson &J Johnson understand the huge potential market that India is for drugs like remicade (for Crohn's RA, etc), and I think that these drugs will become available in the Indian market soon (if not already). As for the cost of this treatment in India, I'm not sure. I think that it will still be expensive, but not as expensive as it is in the US.

For right now, I'd advice you to continue to remain in the US, where the disease is better understood, and treatment options are more readily available. Hang in there, this is for now, a lifelong illness, and we need to stay the course. I hope your husband starts feeling better soon. I've come to realize that we need to enjoy the good days, and focus not so much on the illness. Instead, only focus on the illness when it cannot be ignored, and enjoy the rest of the time - while taking care of the basics (like taking all your medication, and keeping track of your symptoms, etc). You're definitely not alone - here on this board, you have lots of people who know what you're going through. Hang in there, and keep hoping for the best.

PV

pxsk
New Member


Date Joined Jul 2008
Total Posts : 13
   Posted 7/12/2008 9:28 AM (GMT -7)   
I am the newest member and Indian. Came to USA in 1998.
Dx with CD in 2004 at the age of 33, male. Had my First colonoscopy, Fistula surgery and abscess removal at the same time.
 
Right now:
Taking 4g of Pentasa/day.
Iron, multivitamins.
Turmeric pills, Flaxseed, Fishoil.
Trying all kinds of diet changes - reduced consuming meat, Stopped comsuming milk/milk products and bread products(flat bread seems fine). Trying to be only on Rice and Veggies.
 
Last month i.e June 2008, Had a Fistula surgery(no abscess) with seton replaced and a Colonoscopy. Didn't hear positive news.
Started having a stricture in the sigmoid colon but not serious enough at this point. No inflammation in terminal ileum. Other areas are inflamed but not serious enough. But was very clearly told by Colo-rectal surgeon(who did my colonoscopy), that if I am not aggressively treated, I will be 'very soon' back to him for a major surgery.
 
Currently, I have no diarrhea or abdominal pain. My fistula is healing well. Not sure, if I am in a remission period.
 
Will be seeing my GI end of this month. In the past, my GI discussed abt Remicade/Humira, but was not a candidate for those medications because I have latent TB. Was told most of the Indians have latent TB because of the BCG vaccination.
Whatever it is, I need to take TB antibiotics for abt 9months before I can start on Humira/Remicade.
 
Looks like I have very limited options for an aggressive treatment.
 
I regularily talk to my family back in India. They have no clue as none of my family members have CD.
Thought about moving back to India and my dad consulted few GIs there. They are aware of CD but no experience dealing with it. Forget abt medications, they are either not available or too expensive to import.
 
Totally confused and depressed.
 
 

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 7/12/2008 10:58 AM (GMT -7)   
I'm very curious about this.
 
When you guys came to USA, did you change your diets? Do pple in India prepare a lot of food from scratch or do they buy alot of processed or prepared foods like we do?
 
I have heard someone on here before who said that when they went to Africa and ate the natural homemade african food, they never felt better.
 
The prevalence of CD is highest in the western populations, especially Canada/USA. Some experts believe it could be bacteria in our milk/livestock that isn't found as much or at all in Asian/African countries.
 
Perhaps you guys from India have been exposed to something environmentally here that triggered the CD.
 
Sorry for your suffering. Get well soon.

pxsk
New Member


Date Joined Jul 2008
Total Posts : 13
   Posted 7/12/2008 3:27 PM (GMT -7)   
While growing up in India, I always had prepared food at home or School Dining hall. In south India where I grew up, we are used to buffalo milk. Its first time after I came to US that I started using cow's milk. But not sure, if milk/cheese/butter is the culprit.
 
There were very few choices of processed/packaged food until about a decade ago in India.  But now with Indian economy roaring, I see lots of processed food being consumed by the population. I guess its just matter of time that IBD cases becoming common in Asian countries.
 
Ofcourse, my diet changed after I came to US. With the lifestyle here, its not always possible to cook at home. So it is possible that I was exposed to something that is causing immune response. Or maybe I was predisposed to CD genetically, which just got activated by some environmental trigger. I have no clue.
 
 

Post Edited (pxsk) : 7/12/2008 4:30:19 PM (GMT-6)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 7/12/2008 6:12 PM (GMT -7)   
I agree Roni!!! It seems those with Indian background either used to live in the US or currently live in the US. My inlaws are American but lived in Asia (Singapore) for years and are very intrigued by the differences in health in the two cultures. While I was in Singapore (visiting) my health was excellent. I believe diet plays a huge part. Also, where my husband's family lived they did not have cold milk. They had a milk called Klim (yes, milk backwards) but it was sold at room temperature. Even though it was cows milk it must have gone through some other process to make it safe without refridgeration. Maybe that process killed the MAP bacteria.

(PS lets not turn this very important thread into a MAP debate... I don't even know what I believe but if MAP is one possible cause this is an interesting point. If you MUST debate the idea of MAP lets start a new thread lol)
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


mal
Regular Member


Date Joined Jul 2006
Total Posts : 63
   Posted 7/14/2008 8:14 AM (GMT -7)   
Hi pxsk,
welcome to the board.My husband also went through 9 months treatment of TB because of BCG.
Wr are having a hard time without remicade.Lots of side effct with prdnisone and other medicines.
I think milk is something to do with crohns.In India we boil the milk in evey house i think but in here thought it is pastuarised but i think MAP is still there once i read in one article since then I BOIL MILK AND NEVER FORGET.WHERE YOU GET THE TERMURIC PILLS?I think termuric is good in crohns.My In laws and my parents also said that come back in India but this crohns treatment is so costly.
Keep posting .Its good to know that we r not alone .

cdinhyd
Regular Member


Date Joined Sep 2006
Total Posts : 101
   Posted 5/19/2015 4:59 AM (GMT -7)   
I am in India, I had undergone fistula-in-ano surgery in USA while studying for my MS in 1988, at age of 25. US physician did not suspect IBD, did not ask for colonoscopy because I am an Asian Indian, not a candidate for Crohn's.

I believe my Crohn's started in USA because of vast change in food habits (as opposed to always freshly cooked meals) - uncertain times, too much of cheese, microwave pizzas, bread etc. (I am a vegetarian so forced to depend on self prepared or ready to cook food).

My Crohn's disease was identified after my return to India in 1990 by a local well known gastroenterologist through colonoscopy. Initially, it did not affect my regular work, but as age progresses, it takes starts to take toll on health progressively with increasing stomach pain/spasm/burn, anemia, thin frame, innumerable trips to rest room, quick decline in quality of life, fears about future, and dropping out of competition with peers.

Indian Gastroenterologists are aware of Crohn's, I have consulted many in USA and in India. My observation is that treatment in USA takes aggressive turn quickly (from 5ASA to Pred to Remicade), but in India, treatment is usually restricted to first stage drugs. This may *not* be true in all cases of Crohn's.

Remicade costs about Rs 30,000 here per infusion (again you need to *enquire* yourself), and not many patients undergo this treatment here.

There are couple more Indian members on this forum with Crohn's and few Indians known to me in USA who have developed Crohn's there. The main discussion here about Indian Crohnie's choice of life in USA vs in India - depends on many issues. Best Regards.
Male India 52 years Diagnosed CD in 1990 Fistula surgery 1988
Mesacol, Folic Acid, Lethyrox , recent Iron Infusion, Vegetarian

Canada Mark
Veteran Member


Date Joined Jan 2013
Total Posts : 3365
   Posted 5/19/2015 10:08 AM (GMT -7)   
Here is a somewhat informative paper for you and others.

In India (Just as in China and a few other countries) it was often confused with Intestinal Tuberculosis - as this and other many other resources point out. There are some threads on this in the past as well.

CROHN’S DISEASE: THE INDIAN PERSPECTIVE
www.apiindia.org/pdf/medicine_update_2012/gastroenterology_01.pdf

There is a Facebook group I believe as well which might be a good resource to connect with others.

The prevalence if Crohn's Disease in India is probably quite a bit more than one would expect.
Diagnosed Crohns-Colitis 12-13 years ago - Past Meds: Antibiotics, Prednisone, Methotrexate, Imuran, Remicade - Current Meds: Imuran 150mg/daily, Natural: WOO/Thyme Oil, All organic food no additives as best as possible. I stopped taking probiotics as I felt they were not helping much.

“The only person you're destined to become, is the person you decide to be"

ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 559
   Posted 5/20/2015 8:44 PM (GMT -7)   
For whatever it's worth, I live in Taiwan and I was diagnosed in 1989. I was the first case in my city (population 600,000). I'm not Taiwanese, but rather of eastern Europe extraction.

Fast forward to today. I'm still in Taiwan, and my GI doc says that he's got several Taiwanese patients with Crohn's. The disease has increased here, along with the Westernized diet. I assume that there is a relationship between diet and Crohn's, but I don't know what specifically in our modern diet causes this illness.

Hat tip to FitzyK23 - I never realized that Klim was "milk" spelled backwards. Of course! I've mentioned it now to several Taiwanese, they just fall over laughing.
Crohn's since 1988
3 resections

cdinhyd
Regular Member


Date Joined Sep 2006
Total Posts : 101
   Posted 5/21/2015 4:12 AM (GMT -7)   
It is true that IBD is generally mistreated as TB in India. This was before advent of colonoscopy. With colonoscopy becoming cheap and available everywhere and with radiologists gaining experience in detecting IBD, more cases of IBD in India (probably other places like Taiwan) are being detected.

Before colonoscopy, it was just Barium Meal, a worst experience to patient, but can not detect IBD.
Male India 52 years Diagnosed CD in 1990 Fistula surgery 1988
Mesacol, Folic Acid, Lethyrox , recent Iron Infusion, Vegetarian

jobhoo
New Member


Date Joined May 2015
Total Posts : 2
   Posted 5/21/2015 1:55 PM (GMT -7)   
hello -I recently diagnose with chrons diseases, i am Indian, never heard of it. i am strong healthy person, just getting frustration, help needed, how you all are experiencing with disease.

cdinhyd
Regular Member


Date Joined Sep 2006
Total Posts : 101
   Posted 5/22/2015 4:25 AM (GMT -7)   
jobhoo - are you in USA? There are few Indians with CD in USA on this forum, and Indians with CD in India posting on this forum.

It is frustrating to cope up with this disease, and managing life with CD is difficult. Every patient's experience on long CD journey varies.
Male India 52 years Diagnosed CD in 1990 Fistula surgery 1988
Mesacol, Folic Acid, Lethyrox , recent Iron Infusion, Vegetarian

jobhoo
New Member


Date Joined May 2015
Total Posts : 2
   Posted 5/22/2015 4:27 PM (GMT -7)   
Yes I am in usa, we moved here in 2007, no body in our family diagnosed with this desease. My doc said its in mild stage, he put me on Apriso,

cdinhyd
Regular Member


Date Joined Sep 2006
Total Posts : 101
   Posted 5/23/2015 4:20 AM (GMT -7)   
I am also on mesalamine, you may see if your food habits, diet change has caused CD. None of us have ever heard of such disease before I was diagnosed with CD.
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 6/28/2015 11:12 PM (GMT -7)   
I'm one of the new members. My son (8 year old) is diagnosed with Crohn's in April'15. He has moderate to severe Crohn's affecting his colon. We are still in the process of achieving remission for him. We are Indians who moved to USA in 2012. We are vegetarians and our food hasn't changed much. My son is a very clean eater and prefers home made food. He never ate junk.

Post Edited (momof8yroldboy) : 6/29/2015 12:21:29 AM (GMT-6)


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 6/28/2015 11:46 PM (GMT -7)   
At an IBD conference last year, one of the speakers presented epidemiologic data on IBD. It's well-known that IBD is more prevalent in the U.S., Canada, Western Europe, and Australia, and less common in Africa, India and Southeast Asia.

Interestingly, they looked at rates for immigrants to the U.S. He did say that for immigrants to the U.S. from Asia and India, the rates of IBD stay low for the parents (the first generation) - but that their children have higher rates, equivalent to the rates of other people in the U.S.

cdinhyd
Regular Member


Date Joined Sep 2006
Total Posts : 101
   Posted 6/29/2015 4:42 AM (GMT -7)   
momof8yroldboy - was CD diagnosed with Colonoscopy? Sorry to hear the news that your 8 year old son. Best wishes for his recovery. Was there any change in his intake like more cheese, processed food? Or change in climate?

beave - I believe I was affected with CD when I was studying Masters in USA, mainly due to cahnge in food habits.
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 6/29/2015 11:11 PM (GMT -7)   
cdinhyd - yes. His diagnosis was after the colonoscopy.
I don't think his diet has changed. My son is a very clean eater. He didn't like eating cheese, fries, soda or any kind of junk. I think, the change in the climate might have triggered him.
I was wondering if going back to India would ease his symptoms. But. ..there is no clear cut answer.

cdinhyd
Regular Member


Date Joined Sep 2006
Total Posts : 101
   Posted 6/30/2015 4:51 AM (GMT -7)   
Your replies seem to rule out food change almost. Climate change can be a suspect. I think you should try staying in India for one year to see if symptoms ease, but I may be going out of my way in making such suggestion.

Moving to India involves decisions at many levels as there is huge difference in education, medicine, doctors, hospitals, insurance, career, living conditions between India and USA. As I have mentioned in one of my posts, treatment in USA tends to go aggressive quickly from 5ASA to remicade and surgery, where as Indian treatment is rather steady. Of course, this may not be true in all cases.

Again I may be going out of my way in asking this - does your son have a sibling? I have an elder brother in USA who has IBS but completely under control.

Best wishes for your son.
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 7/1/2015 9:06 PM (GMT -7)   
Thanks for your reply cdinhyd.
I know, moving back to India is a huge decision. Especially when you aren't sure if it's gonna be worth. Crohn's is better understood here in the US.

He's my only child.

cdinhyd
Regular Member


Date Joined Sep 2006
Total Posts : 101
   Posted 7/3/2015 4:15 AM (GMT -7)   
You can find doctors who can treat Crohns here too. I think you can try staying for one year in India, instead of planning to move back to India. Best Regards.
Male India 52 years Diagnosed CD in 1990 Fistula surgery 1988
Mesacol, Folic Acid, Lethyrox , recent Iron Infusion, Vegetarian

santosang
New Member


Date Joined Jul 2015
Total Posts : 1
   Posted 7/20/2015 7:38 PM (GMT -7)   
Hi cdinhyd,

I am in the same boat as you. Came here for my MS in September 2012 and was diagnosed with CD in July 2014. No major diet changes and almost everyday I cooked my own food. Not sure how I was diagnosed with CD.

I agree with you in that the doctors here are very aggressive, although I am seeing an Indian GI. I was put on Mesalamine first, and then put on Budesonide for a few months and now currently on Humira.

I plan to India in 2 years from now and was wondering what my options are. I had no plans of staying in the US anyways and was here only for my MS. But now I am dependent on Humira. I'd be really grateful to you if you could share your experiences with CD in India.
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