# Crohn's indians Support Group



## guideme

Hi 

I would like to invite all the indians to share their Crohn's experience here. Thanks


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## SUNIT

Yes agree lets invite all Indian here


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## Madhu

Hi guys. Came to US from India in 2014. My husband was diagnosed with Crohn's in 2015 and the doctor said it could be because of the environment change because of moving to US.


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## SUNIT

I got Crohn with in 6 month of coming to London..now going back to India for a small vacation just to see if i get some change by going back


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## Madhu

SUNIT said:


> I got Crohn with in 6 month of coming to London..now going back to India for a small vacation just to see if i get some change by going back


Great! Let us know how it goes. We are planning for a vacation to India this year too. I hope you feel good.


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## SUNIT

Thanks Aarthi just hope so...Hope your husband doing well and in remission


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## Madhu

SUNIT said:


> Thanks Aarthi just hope so...Hope your husband doing well and in remission


He is better now. Not officially in remission yet. Looks like most people from India here got Crohn's only after moving out of India!! Makes us think if that is the reason.


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## SUNIT

Nice to hear he is doing good..hope he achieve remission soon..But now a days Crohn is picking up in India also..So not sure how far we can contribute to Moving but surely there is link.


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## shankar

Add me in.. Now in chennai for holidays.. live in canada..


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## vinu

i have been identified with Crohn's in 2011-Oct.
Am now 27 years-male. I am living in india only.And have homely foods.
Its the first time me and my family hearing about this disease.
Initialy i was anemic and was very tired always and started loosing weight.
Consulting a local doctor, taking iron tablets did not do much cure.
Later i consulted a Gastro enterologist and identified the disease. But one thing is i donot have severe pain in abdomen. All other symtoms i have like diorehea, fistula, anemic, vominting etc.
Then i started taking medicines and i gained my weight.
I was given some steroids and inflamation healing tabltes and vitamin tablets.
I am not good at taking medicines regularly.I am running a shop in the town.
When i feel like am ok, feeling good and gaining more weight i will stop medicines.
Also am worried  about the side effects of taking medicines and steroids.
For the last 6 months i was not taking any medicines and was ok.
Now now again i started loosing weight and have naussea.
Again i went to doctor and now am taking tablets. I also heard that the disease will be in remission after the age of 30. Is that true?

Now am 27 years and started thinking about  a  family.
My family and i have a great concern about my disease .
Can i lead a normal life. Can i have kids(Hope the medicines do not have the side effects).
I will be into an arranged marriage. So should i speak about this disease to the girl and her family in the beginning itself? My family had a concern that if we spoke about it, even the disease can be maintained, or in remission 
the girls family will not agree for a diseased son-in-law. Or after fixing everything, we can raise the concern of having this disease at last and thay can decide on to continue with the proposal. 
Or is it ok not to tell them about this?

Need some opinion from out of  family.?
Please help.


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## shankar

vinu said:


> i have been identified with Crohn's in 2011-Oct.
> Am now 27 years-male. I am living in india only.And have homely foods.
> Its the first time me and my family hearing about this disease.
> Initialy i was anemic and was very tired always and started loosing weight.
> Consulting a local doctor, taking iron tablets did not do much cure.
> Later i consulted a Gastro enterologist and identified the disease. But one thing is i donot have severe pain in abdomen. All other symtoms i have like diorehea, fistula, anemic, vominting etc.
> Then i started taking medicines and i gained my weight.
> I was given some steroids and inflamation healing tabltes and vitamin tablets.
> I am not good at taking medicines regularly.I am running a shop in the town.
> When i feel like am ok, feeling good and gaining more weight i will stop medicines.
> Also am worried  about the side effects of taking medicines and steroids.
> For the last 6 months i was not taking any medicines and was ok.
> Now now again i started loosing weight and have naussea.
> Again i went to doctor and now am taking tablets. I also heard that the disease will be in remission after the age of 30. Is that true?
> 
> Now am 27 years and started thinking about  a  family.
> My family and i have a great concern about my disease .
> Can i lead a normal life. Can i have kids(Hope the medicines do not have the side effects).
> I will be into an arranged marriage. So should i speak about this disease to the girl and her family in the beginning itself? My family had a concern that if we spoke about it, even the disease can be maintained, or in remission
> the girls family will not agree for a diseased son-in-law. Or after fixing everything, we can raise the concern of having this disease at last and thay can decide on to continue with the proposal.
> Or is it ok not to tell them about this?
> 
> Need some opinion from out of  family.?
> Please help.


I am 27 too.. This crohns/IBD has recently been into my life for past few months or so.. I am no expert in medical field.. I will try to answer from what i have read before.. The medication treats crohn's symptoms and not the disease.. That is the reason people take life long medication with IBD, unless some miraculous cure comes up (very unlikely in the next 20 yrs or so.) .. There is no magic age number like age 30 after which the disease will have remission. You are basically try to keep the disease in check, But according to statistics everyone who has crohns will eventually need a surgery.. thats why its a chronic disease..
You can lead a normal life with Crohn's, so many people diagnosed at young age live with it.. It has no effects on lifespan.. The medicine has various sideeffects depending on the medication you are prescribed.. you need to be aware of it.. So far none of the medicine i know affects sperm production. So, you shouldnt have any problems in having a kid.. But again there is statistics, which say that IBD is genetic, and your kid have higher chance to get IBD than an average kid.. Again its just the numbers, its like the kid inherits so many attributes from father and essentially has same diet and same living environment.. So that could be the factor.. No one knows.. So, you can have a kid and not to worry about that.. 

Living with crohns is very hard without an understanding partner.. She will be a part of your new life ahead.. You shouldn't start by lying/hiding the truth.. Your parents will need you to hide, so that they assume you get a better bride and when she comes to know.. and kid can grow up, and most likely the inlaw family will forget the issue and everything will be normal..

From their perspective , it will be.. But think of your wife, She is kinda forced to live the life with you which started with a lie.. IBD is certainly something, not many are aware of..  Its better you let her know that you have, and what are the complications/effects it could have.. Say her the truth.. that matters.. Because she will be your only support, she is gonna take care of your food/medications or deal with emergency situations.. You clearly don't wanna go through argument with everyday life, and it creates a whole new chain of problems/depression and other related issues.. Your parents and her parents doesn't have to know.. If you both are compatible in other way, Then talk with her.. make sure you explain everything clearly.. She will get hesistant.. But i believe that's something you should do for your future selves.. 

P.S : I am married, and i have lots of personal problems with marriage/families and we are not living together yet.. Its quite complex..


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## guideme

Hi Vinu,

You must disclose about the disease to the girl's family before marriage itself. otherwise it will lead to divorce on the medical grounds. (i am not threatening you but this happend to few people). The purpose of marriage will not be fulfilled. Most important is the girl and her family feel cheated and so many disturbances will come later. Rather than disease feeling cheated hurts the girls family. They might feel that only for having kid and to continue your generation you got married. This will not add any happiness to your married life even if you are too good to the girl and her family. 

Remember the girl has to bear all the consequences of your disease. Try to tell her that it is not life threatening and you can lead normal life. But you should have medical checkups regularly. Marry only those who is ok with your disease (i am sure you will get one). It might take time and you need to go through frustrations. It might be difficult in the beginning but thats ok. But be patient for lifetime happiness. 

I have seen a situation like this. Girl family felt that the boy ruined their lives. They said that this guy would have married a poor girl who is ok with his disease. If the boy got the disease after marriage, we would have served him for life time. Girl family was prestigious and still they opt for divorce as per hindu marriage act.

Think and plan how to deal with the discussions about your disease. Think and take the right decision.


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## Madhu

Hi Vinu

I second everyone's opinion. Its best you tell them before hand. There are sensible girls who understand that this is something out of hand and they wouldnt have done anything if you got it after marriage. You can also tell them you are leading a normal life and the disease does not interfere with your life (If it is the truth). 

No, age 30 does not have anything to do with remission. It depends on how the medicine reacts with your body and how good you are feeling. It does not have anything to do with age.

I hope you feel better


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## vinu

Thank u everyone for the support and advices...


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## SUNIT

I am travelling this weekend to India for few days..(First time after DX crohn's)

Will be landing in Delhi and then will go to Rajasthan vis raod..

Does any one have suggestion on things to carry and worry of some thing.

My biggest worry is diarrhea...


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## Kancer

guideme said:


> Hi Vinu,
> 
> You must disclose about the disease to the girl's family before marriage itself. otherwise it will lead to divorce on the medical grounds. (i am not threatening you but this happend to few people). The purpose of marriage will not be fulfilled. Most important is the girl and her family feel cheated and so many disturbances will come later. Rather than disease feeling cheated hurts the girls family. They might feel that only for having kid and to continue your generation you got married. This will not add any happiness to your married life even if you are too good to the girl and her family.
> 
> Remember the girl has to bear all the consequences of your disease. Try to tell her that it is not life threatening and you can lead normal life. But you should have medical checkups regularly. Marry only those who is ok with your disease (i am sure you will get one). It might take time and you need to go through frustrations. It might be difficult in the beginning but thats ok. But be patient for lifetime happiness.
> 
> I have seen a situation like this. Girl family felt that the boy ruined their lives. They said that this guy would have married a poor girl who is ok with his disease. If the boy got the disease after marriage, we would have served him for life time. Girl family was prestigious and still they opt for divorce as per hindu marriage act.
> 
> Think and plan how to deal with the discussions about your disease. Think and take the right decision.


I am 19 right now and I have thought of all these already. I understand that one should disclose their disease before marriage but there are some insensitive people (potential spouse or their family) that leak the information if they choose to no longer proceed with the arranged marriage. 

Thats my main concern. I am perfectly willing to disclose my condition but there will always be some that will not care about how hurtful it can be to simply disclose to a 3rd party.


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## shankar

Kancer said:


> I am 19 right now and I have thought of all these already. I understand that one should disclose their disease before marriage but there are some insensitive people (potential spouse or their family) that leak the information if they choose to no longer proceed with the arranged marriage.
> 
> Thats my main concern. I am perfectly willing to disclose my condition but there will always be some that will not care about how hurtful it can be to simply disclose to a 3rd party.


You are just 19.. Just focus on keep yourself happy.. surround yourself with positive people.. You are normal, you will fall in love with some crazy girl in the mean time .. Nothing matters when you both love each other


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## kavya

aarthi said:


> Hi guys. Came to US from India in 2014. My husband was diagnosed with Crohn's in 2015 and the doctor said it could be because of the environment change because of moving to US.


Aarthi

please share your details,i live in Atlanta have same problem for my husband


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## kavya

whats the medicine doctor prescribe in india?other than steroids?if they prescribe can I know remicare cost in india? or humira?


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## shankar

Remicade 100 mg vial costs 42000 INR .. You may need 4 to 6 of them over the course of weeks.. I haven't taken that, I just researched on Google.. In US,its 2 to 3 times its cost ..


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## deepika

Hi everyone,
My husband is having Crohn's. He is taking infliximab injections. Doctor told me that he should take them for life time and this disease will also be for lifetime. He is taking feronia as well for which his teeth getting black. I am so scared to be close to him with these consequences.

We have been trying for kid for past one year but nothing happend.

Loosing hopes on future. Diseased husband, no kids, no peace. Marriage ruined my future. I am thinking of leaving him and at the same time doubting if this is the right thing to do.


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## SUNIT

Sorry to hear that Deepika...I have seen many people here having crohn but manage to have family and kids so not sure if crohn has any thing to do in your case.


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## kavya

Deepika

Dont loose hope,You are not the only one ,here lot of people due to lifestyle change and fast food eater are now gettign this disease,Iam in US atlanta,GA
ifyou want i can get in touch with you over phone

here in india and US people are getting this Crohn's so dnt loose hope and it can be manageable and i have one kid and my husband have crohns
here is my email id kavithababu2005@gmail.com,wil get in touch

regards
Kavya


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## anmonk

hi guys,
i am glad to see a forum for Indian as IBD is a less heard disease in India. 
I am 24 years old from Bangalore,India. Its been 3 years since i was diagnosed with crohn's its been a hell of a journey. I have had 4 surgeries till date. The last one being 4 months ago. I am currently in remission and understood a lot about managing my health. I aim to stop alll medications that i am currently taking in the next 5 years (Yes, after doctor's advice ONLY!!) I am really happy with my life and the things what crohn's has thought me. All i would like to say is crohn's is my disease and i control it. Crohn's can't stop me from achieving my goals and living my life to the fullest. Cheers!!


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## kavya

anmonk said:


> hi guys,
> i am glad to see a forum for Indian as IBD is a less heard disease in India.
> I am 24 years old from Bangalore,India. Its been 3 years since i was diagnosed with crohn's its been a hell of a journey. I have had 4 surgeries till date. The last one being 4 months ago. I am currently in remission and understood a lot about managing my health. I aim to stop alll medications that i am currently taking in the next 5 years (Yes, after doctor's advice ONLY!!) I am really happy with my life and the things what crohn's has thought me. All i would like to say is crohn's is my disease and i control it. Crohn's can't stop me from achieving my goals and living my life to the fullest. Cheers!!



Hi

Nice to hear,tell me your journey it would b helpfull for others?


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## anmonk

hello kavya,
i am happy to share my experience with crohn's if it would help others. Before i start sharing, i would like to say few important things in the beginning...
1) Every persons symptoms and disease activity is different and anyone who is recently diagonised with crohn's need not get scared reading my story cause it does not mean the experiences i have faced will be faced by others too..
2) keep your minds open and just read the story without comparing it with your experience..there might be few similarities but do not over think..

So here it is...

Time travel to 2012 March. I am a regular 20 year old college going kid who is in final year of under-graduation studies. Healthy, well build, athletic (i was going to gym as well) and as any regular college kid i used to eat junk and street food. Now and then i had trouble with my stomach which used to cured with a few anti-diarrhea medications. I thought it might be due to the junk food or some infection. Although, my health din't bother me much, i was normal and healthy. During March i had fever which lasted for few days and disappeared after a dose of over-the-counter paracetamol. Again after few days i had fever so i visited the doctor who thought it might be infection and prescribed me antibiotics. After completing the dose i dint feel good, though i din't have fever. Days went on i felt tired and in couple of weeks i had stomach pain. I visited the doctor and after my ultra sound he thought it might me appendicitis which is common. i was scheduled for appendectomy the following week. After the surgery i was told that the surgeon found something usual and had suspected it might be tuberculosis infection, hence had to remove part of my colon and for confirmation had send the biopsy to lab. After a couple of days i get the report which says i had tuberculosis infection ( first blunder which leads to a misery of suffering and pain). So, i get discharged being skinny. i lose around 15 kgs in 20days and i weigh around 54 during discharge. It takes a couple of months before i start recovering and going to college again (yeah, i was taking tuberculosis meds which has to be taken for a duration of 9 months) i was gaining weight and started to feel normal. After 5 months somewhere in the end of december 2012 my stomach issues start and i start losing weight gradually. My doctor refers me to one of the most popular gastroenterologist in bangalore. 

This doctor reviews my history and suggests me to undergo colonoscopy and few other blood tests. After the tests are done the next week i again meet the doctor and he reveals that have crohn's and my tuberculosis was a misdiagnosis (even now, as i type my story i get scared thinking about that moment). As i am a biotechnology student all i had heard of crohn's is that it is a type of autoimmune disease and it affects the intestines mostly. The moment i hear my diagnosis from the doctor i am shocked and hardly have anything to say. My doctor was really sweet, he did not scare me all he told was crohn's is manageable and i need not worry there are diverse treatments available.So, i start taking corticosteriods with other immuno-suppressive drugs i start getting back to normal. IF you guys are thinking what happened to my academics i had to take a year break cause i of my illness. After 6 months of treatment i was feeling normal but not to the fullest, i was OK. I started going to college and my life changed, i was visiting my doctor every month with blood tests, colonoscopy was like any other normal tests ( i was adjusted to the colonoscopy prep solutions). I could not hang out with friends cause i was scared about my irregular bowel movements, i din't know even a roti would make my stomach upset, i ate mostly curd rice. i had lost my confidence, energy and my identity. When things were just passing by, my doctor started to notice a pattern of continuous increase in my c-reactive protein levels, which indicate inflammation, and put me on infliximab therapy just few days before my final exams (i still remember me studying when the IV was attached to one hand). Once the meds started to take charge i had drastic decrease in the inflammation. So happily i manage to complete my final exams thinking this is the last time i would be bothered by my crohn's. After exams i start to visualize myself studying post-graduation in one of the best universities in India and i started applying. I managed to get merit seat in one of the best college away from my hometown. 

i leave my hometown and shift to my university hostel. suddenly my life started looking beautiful with new friends and amazing hostel life though i had lot of food restrictions i managed to eat the kind of food which suited my stomach. Just as  i started to think i am normal like others i start to have constipation with severe stomach pain (start of another misery) i go back to bangalore and my doctor says i have obstruction of my colon (the first time i here the word 'obstruction' associated with 'colon'). I was started on corticosteriods again with no improvement. My family thought it would be nice if we consult an ayurvedic doctor seeings the miracles advertised on the internet by ayruveda speacialist. I happened to go to kerala that best place for ayruveda in India. The doctor said it can be treated and  i was admitted in the hospital for 15 days with horrible food restrictions. Basically i was put on liquid diet for 15 days and was asked to continue the same for 2 months. I manged to go on liquid for 1 month after which i was half dead and unable to even respond to the pain of obstruction (the word 'pathetic' sounds very modest in describing the pain) That was the first time in my life i wished i would be dead. I was carried on a stretcher to the hospital and after giving me protein supplementation in IV i was administered with antibiotic which miraculously would clear the obstruction. (This would last upto a week after discharge and again my colon would get obstructed) ------>repeat this sentence 8 times. Because that were the number of times i would be admitted before i was finally scheduled for surgery in August 2015. My dreams of graduating shattered and i have to withdraw from M.Sc. 

If you can't believe that life can push you down even when you are close to death, my life is an example.  

Somehow with the help of my family and doctors i managed to build the courage and i was ready for the surgery the next day. After 3 years i am again on the operation table with the nurse asking me to count from 10 to 1 reverse before i become unconscious so that a part of my colon can again be resected (hemicolectomy) after the surgery which i was told lasted for 4  hours i gained conscious and hardly had energy to speak. The next day i remember the doctor telling me that the surgery was successful and i would be fine. After a couple of days went the doctor opened my wound for dressing he could see the wound had been infected he thought it to be minor and would heal itself. The next day morning my mother sees the bed sheet become green color while i am asleep and when she wakes me, we realize that a green color fluid  is oozing from my surgical wound (that moment i thought i would die the same day). The doctor sees the fluid and  schedules me for a emergency surgery and does a temporary ileostomy. The moment i wake up after the surgery i see a bag sticking out of my right abdomen filled with green fluid. Later my mom and doctor explain to me about the  ileostomy bag. Within a span of one week i undergo 2 surgeries i am left with no flesh in my body and i weighed only 39 kgs being 6.1 feet tall.

During this time i started to contemplate about my life. Being bedridden gave me the chance to  prioritize the aspects of my life. This is where i made the most crucial changes in my ideology of life. I started to realize that without health even if we are breathing we are dead. Health gives you freedom, it helps achieve your dreams, it helps you to contribute to the community. Ultimately, health gives you life. 

During ileostomy i was put on high fat and protein diet. I followed the doctors instructions strictly and managed to again 20kgs in the next three months (your body starts to gain weight rapidly during recovery from severe weakness.) And finally on December 4th 2015 I had my final surgery during which my ileostomy was reversed. After the reversal i was adviced by the doctor that except the rectum and some portion of my sigmoid colon, most of my colon was removed i would have trouble in water absorption due to which i may have more bowel movements. Believe me after facing near to death experiences due to crohn's i had the courage like never before to face whatever is thrown at me with full optimism. I just smiled at the doctor and felt the hospital. Yes i had around 20x times of bowel movements a day but now it has reduced to 4 to 5 times on an average. I have been eating healthy food and my lifestyle has completely changed i am managing my disease well. Now i know what it takes to beat crohn's. I can assure you that now i have started living my life to the fullest with the first priority being my health. I started exercising after one month of my surgery, i started with walking and gradually started road cycling and since one month i have started slow jogging. I am competing with myself and i am better today than i was yesterday. I have few important life goals of which one among them is to work on crohn's disease as i have seen the impact it has on the life of patients. Hopefully i well be able to make the lives of IBD patients better by treating them one day. I wish to be a role model to show that crohn's is not a limiting factor. In fact, it craves you into the bravest humans one can be. RESPECT to all you IBD suffers you guys are real heroes. JUST remember that no one can put a smile on their face and walk facing the situations as we do every single day in our lives. Make certain goals in your lives put all your efforts to achieve them, do not compare yourself to others as life has a special meaning for each one of you. This is what Crohn's thought  me.


All the best guys


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## shankar

deepika said:


> Hi everyone,
> My husband is having Crohn's. He is taking infliximab injections. Doctor told me that he should take them for life time and this disease will also be for lifetime. He is taking feronia as well for which his teeth getting black. I am so scared to be close to him with these consequences.
> 
> We have been trying for kid for past one year but nothing happend.
> 
> Loosing hopes on future. Diseased husband, no kids, no peace. Marriage ruined my future. I am thinking of leaving him and at the same time doubting if this is the right thing to do.


Do not let a medical condition determine your life.. Take your time.. get opinion from at-least 6 different people you know and trust(make sure none from the family) .. take your time before taking a decision.. Sometimes decisions in life are tough.. But make sure that you wont regret from your decision..You may get a medical condition later on life or accident (anything can happen) , your crohn's husband will understand your pain and feelings much better than someone who have never been through anything like that.. Sometimes life doesnt have to be same life everyone you see (perhaps, what you see cant be real as well..) .. There are so many factors in life to take a decision which no one in the forum is aware of.. Do not take a decision by feeling guilty for leaving/looking at the sad state of husband.. Its your life.. choose what you think its right, but give it time so that the decision will  be wise :hug:



anmonk said:


> i am happy to share my experience with crohn's if it would help others. Before i start sharing, i would like to say few important things in the beginning...


You are incredible.. im glad where you are now :hug:


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## smt

shankar said:


> I am 27 too.. This crohns/IBD has recently been into my life for past few months or so.. I am no expert in medical field.. I will try to answer from what i have read before.. The medication treats crohn's symptoms and not the disease.. That is the reason people take life long medication with IBD, unless some miraculous cure comes up (very unlikely in the next 20 yrs or so.) .. There is no magic age number like age 30 after which the disease will have remission. You are basically try to keep the disease in check, But according to statistics everyone who has crohns will eventually need a surgery.. thats why its a chronic disease..
> You can lead a normal life with Crohn's, so many people diagnosed at young age live with it.. It has no effects on lifespan.. The medicine has various sideeffects depending on the medication you are prescribed.. you need to be aware of it.. So far none of the medicine i know affects sperm production. So, you shouldnt have any problems in having a kid.. But again there is statistics, which say that IBD is genetic, and your kid have higher chance to get IBD than an average kid.. Again its just the numbers, its like the kid inherits so many attributes from father and essentially has same diet and same living environment.. So that could be the factor.. No one knows.. So, you can have a kid and not to worry about that..
> 
> Living with crohns is very hard without an understanding partner.. She will be a part of your new life ahead.. You shouldn't start by lying/hiding the truth.. Your parents will need you to hide, so that they assume you get a better bride and when she comes to know.. and kid can grow up, and most likely the inlaw family will forget the issue and everything will be normal..
> 
> From their perspective , it will be.. But think of your wife, She is kinda forced to live the life with you which started with a lie.. IBD is certainly something, not many are aware of..  Its better you let her know that you have, and what are the complications/effects it could have.. Say her the truth.. that matters.. Because she will be your only support, she is gonna take care of your food/medications or deal with emergency situations.. You clearly don't wanna go through argument with everyday life, and it creates a whole new chain of problems/depression and other related issues.. Your parents and her parents doesn't have to know.. If you both are compatible in other way, Then talk with her.. make sure you explain everything clearly.. She will get hesistant.. But i believe that's something you should do for your future selves..
> 
> P.S : I am married, and i have lots of personal problems with marriage/families and we are not living together yet.. Its quite complex..



You write: "But according to statistics everyone who has crohns will eventually need a surgery.. thats why its a chronic disease.."

This is patently untrue. And also, it is not a chronic disease because of that. This assertion is meaningless.

_The Crohn's & Colitis Foundation of America estimates that about 70 percent of Crohn’s patients eventually need surgery to repair damage or remove an obstruction. 
_

Source:
http://www.healthline.com/health/crohns-disease/facts-statistics-infographic#4


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## anmonk

shankar said:


> Do not let a medical condition determine your life.. Take your time.. get opinion from at-least 6 different people you know and trust(make sure none from the family) .. take your time before taking a decision.. Sometimes decisions in life are tough.. But make sure that you wont regret from your decision..You may get a medical condition later on life or accident (anything can happen) , your crohn's husband will understand your pain and feelings much better than someone who have never been through anything like that.. Sometimes life doesnt have to be same life everyone you see (perhaps, what you see cant be real as well..) .. There are so many factors in life to take a decision which no one in the forum is aware of.. Do not take a decision by feeling guilty for leaving/looking at the sad state of husband.. Its your life.. choose what you think its right, but give it time so that the decision will  be wise :hug:
> 
> 
> 
> You are incredible.. im glad where you are now :hug:


Hello Shankar, I am living in Bangalore now...I'll be starting my master's degree again..how about you? Where do you live?


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## chipmunk2016

Hello everyone!

It is great to see a community here. We are all in this together! 

I would really appreciate if you could give recommendations and share your diet (what veggies do you take, cooking styles as per Indian cooking/cuisine) . What did you change after being diagnosed with Crohns?

 I understand that everyone is different, hence the foods that might be sensitive to you is not for another person, but I just want to get a general idea.

Thanks in advance!


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## alchemy

Agree, so great to see a community here and we are all in this together.


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## alchemy

If any of your family members would like to volunteer, here is a good resource
http://www.gemproject.ca/

Also donating to this and MAP project might be good..


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## alchemy

*Diet*

On diet:
http://nutritionfacts.org/video/preventing-crohns-disease-with-diet/

If anyone is serious and committed enough, 
Dr Hunter, who practiced and worked on Crohn's and UC patients over many decades and claims it can be get into remission with diet and the success rate is 70-90% (better than taking conventional medication and without any side effects)
http://www.crohns.org.uk/crohns_disease/nutritional_therapy

You can also get his book from Amazon


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## ravioliyears

Hi, I am Gujarati, aged 17 and have been living in the UK my whole life. I started getting symptoms of IBD when I was 11 and was diagnosed aged 15 with Ulcerative Colitis.


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## venkat

anmonk said:


> hello kavya,
> i am happy to share my experience with crohn's if it would help others. Before i start sharing, i would like to say few important things in the beginning...
> 1) Every persons symptoms and disease activity is different and anyone who is recently diagonised with crohn's need not get scared reading my story cause it does not mean the experiences i have faced will be faced by others too..
> 2) keep your minds open and just read the story without comparing it with your experience..there might be few similarities but do not over think..
> 
> So here it is...
> 
> Time travel to 2012 March. I am a regular 20 year old college going kid who is in final year of under-graduation studies. Healthy, well build, athletic (i was going to gym as well) and as any regular college kid i used to eat junk and street food. Now and then i had trouble with my stomach which used to cured with a few anti-diarrhea medications. I thought it might be due to the junk food or some infection. Although, my health din't bother me much, i was normal and healthy. During March i had fever which lasted for few days and disappeared after a dose of over-the-counter paracetamol. Again after few days i had fever so i visited the doctor who thought it might be infection and prescribed me antibiotics. After completing the dose i dint feel good, though i din't have fever. Days went on i felt tired and in couple of weeks i had stomach pain. I visited the doctor and after my ultra sound he thought it might me appendicitis which is common. i was scheduled for appendectomy the following week. After the surgery i was told that the surgeon found something usual and had suspected it might be tuberculosis infection, hence had to remove part of my colon and for confirmation had send the biopsy to lab. After a couple of days i get the report which says i had tuberculosis infection ( first blunder which leads to a misery of suffering and pain). So, i get discharged being skinny. i lose around 15 kgs in 20days and i weigh around 54 during discharge. It takes a couple of months before i start recovering and going to college again (yeah, i was taking tuberculosis meds which has to be taken for a duration of 9 months) i was gaining weight and started to feel normal. After 5 months somewhere in the end of december 2012 my stomach issues start and i start losing weight gradually. My doctor refers me to one of the most popular gastroenterologist in bangalore.
> 
> This doctor reviews my history and suggests me to undergo colonoscopy and few other blood tests. After the tests are done the next week i again meet the doctor and he reveals that have crohn's and my tuberculosis was a misdiagnosis (even now, as i type my story i get scared thinking about that moment). As i am a biotechnology student all i had heard of crohn's is that it is a type of autoimmune disease and it affects the intestines mostly. The moment i hear my diagnosis from the doctor i am shocked and hardly have anything to say. My doctor was really sweet, he did not scare me all he told was crohn's is manageable and i need not worry there are diverse treatments available.So, i start taking corticosteriods with other immuno-suppressive drugs i start getting back to normal. IF you guys are thinking what happened to my academics i had to take a year break cause i of my illness. After 6 months of treatment i was feeling normal but not to the fullest, i was OK. I started going to college and my life changed, i was visiting my doctor every month with blood tests, colonoscopy was like any other normal tests ( i was adjusted to the colonoscopy prep solutions). I could not hang out with friends cause i was scared about my irregular bowel movements, i din't know even a roti would make my stomach upset, i ate mostly curd rice. i had lost my confidence, energy and my identity. When things were just passing by, my doctor started to notice a pattern of continuous increase in my c-reactive protein levels, which indicate inflammation, and put me on infliximab therapy just few days before my final exams (i still remember me studying when the IV was attached to one hand). Once the meds started to take charge i had drastic decrease in the inflammation. So happily i manage to complete my final exams thinking this is the last time i would be bothered by my crohn's. After exams i start to visualize myself studying post-graduation in one of the best universities in India and i started applying. I managed to get merit seat in one of the best college away from my hometown.
> 
> i leave my hometown and shift to my university hostel. suddenly my life started looking beautiful with new friends and amazing hostel life though i had lot of food restrictions i managed to eat the kind of food which suited my stomach. Just as  i started to think i am normal like others i start to have constipation with severe stomach pain (start of another misery) i go back to bangalore and my doctor says i have obstruction of my colon (the first time i here the word 'obstruction' associated with 'colon'). I was started on corticosteriods again with no improvement. My family thought it would be nice if we consult an ayurvedic doctor seeings the miracles advertised on the internet by ayruveda speacialist. I happened to go to kerala that best place for ayruveda in India. The doctor said it can be treated and  i was admitted in the hospital for 15 days with horrible food restrictions. Basically i was put on liquid diet for 15 days and was asked to continue the same for 2 months. I manged to go on liquid for 1 month after which i was half dead and unable to even respond to the pain of obstruction (the word 'pathetic' sounds very modest in describing the pain) That was the first time in my life i wished i would be dead. I was carried on a stretcher to the hospital and after giving me protein supplementation in IV i was administered with antibiotic which miraculously would clear the obstruction. (This would last upto a week after discharge and again my colon would get obstructed) ------>repeat this sentence 8 times. Because that were the number of times i would be admitted before i was finally scheduled for surgery in August 2015. My dreams of graduating shattered and i have to withdraw from M.Sc.
> 
> If you can't believe that life can push you down even when you are close to death, my life is an example.
> 
> Somehow with the help of my family and doctors i managed to build the courage and i was ready for the surgery the next day. After 3 years i am again on the operation table with the nurse asking me to count from 10 to 1 reverse before i become unconscious so that a part of my colon can again be resected (hemicolectomy) after the surgery which i was told lasted for 4  hours i gained conscious and hardly had energy to speak. The next day i remember the doctor telling me that the surgery was successful and i would be fine. After a couple of days went the doctor opened my wound for dressing he could see the wound had been infected he thought it to be minor and would heal itself. The next day morning my mother sees the bed sheet become green color while i am asleep and when she wakes me, we realize that a green color fluid  is oozing from my surgical wound (that moment i thought i would die the same day). The doctor sees the fluid and  schedules me for a emergency surgery and does a temporary ileostomy. The moment i wake up after the surgery i see a bag sticking out of my right abdomen filled with green fluid. Later my mom and doctor explain to me about the  ileostomy bag. Within a span of one week i undergo 2 surgeries i am left with no flesh in my body and i weighed only 39 kgs being 6.1 feet tall.
> 
> During this time i started to contemplate about my life. Being bedridden gave me the chance to  prioritize the aspects of my life. This is where i made the most crucial changes in my ideology of life. I started to realize that without health even if we are breathing we are dead. Health gives you freedom, it helps achieve your dreams, it helps you to contribute to the community. Ultimately, health gives you life.
> 
> During ileostomy i was put on high fat and protein diet. I followed the doctors instructions strictly and managed to again 20kgs in the next three months (your body starts to gain weight rapidly during recovery from severe weakness.) And finally on December 4th 2015 I had my final surgery during which my ileostomy was reversed. After the reversal i was adviced by the doctor that except the rectum and some portion of my sigmoid colon, most of my colon was removed i would have trouble in water absorption due to which i may have more bowel movements. Believe me after facing near to death experiences due to crohn's i had the courage like never before to face whatever is thrown at me with full optimism. I just smiled at the doctor and felt the hospital. Yes i had around 20x times of bowel movements a day but now it has reduced to 4 to 5 times on an average. I have been eating healthy food and my lifestyle has completely changed i am managing my disease well. Now i know what it takes to beat crohn's. I can assure you that now i have started living my life to the fullest with the first priority being my health. I started exercising after one month of my surgery, i started with walking and gradually started road cycling and since one month i have started slow jogging. I am competing with myself and i am better today than i was yesterday. I have few important life goals of which one among them is to work on crohn's disease as i have seen the impact it has on the life of patients. Hopefully i well be able to make the lives of IBD patients better by treating them one day. I wish to be a role model to show that crohn's is not a limiting factor. In fact, it craves you into the bravest humans one can be. RESPECT to all you IBD suffers you guys are real heroes. JUST remember that no one can put a smile on their face and walk facing the situations as we do every single day in our lives. Make certain goals in your lives put all your efforts to achieve them, do not compare yourself to others as life has a special meaning for each one of you. This is what Crohn's thought  me.
> 
> 
> All the best guys


 Hi anmonk,  You are so brace... and that's the way.  My story is a bit similar, diagnosed last month with Crohns.  I shared my story in the forum.


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## mellyag

Yes agree lets invite all Indian here


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## Newhope123

Hi guys,
How you all are doing? 
Just found out this group. Any improvement with conventional or alternative medicine?


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## shankar

Doing great. how are you doing?  I don't believe in alternative medicine. so just hanging around.


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## Newhope123

I am not doing that great. still with loose bm. But I am strictly against medicines. That is what brought me here at first place. 
Have you tried changing food? 
Did that help? I am now thinking to go for probiotic food fermenting them at home.


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## Madhu

My hubby's doing ok. He had the beginnings of a flare in March but we were able to control it quickly luckily. He is now on 4 week Remicade infusions.


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## Hemant

Hi Everybody... Looking for your help on some input. My daughter was diagnosed with CD at the age of 4. She is now 6 yrs old and on Mercaptopurine and Allopurinol, which is working in her case at this moment. We live in USA currently and I am on working visa. In case we need to move back to Mumbai I am looking answers to some of my questions -
(1) Are there good Doctors/Hospitals who can treat CD in Mumbai? I read that CD is not very common in India hence asking this. 
(2) Given a choice do you recommend strongly to stay back in US for CD treatment or looking at the current development in India no issues moving back to India as far as the treatment and her future medical conditions are concerned?
(3) She is taking Mercaptopurine 10 MG/ML daily, which is in liquid format. 10 MG/ML is not available in regular pharmacy stores (available in 50 MG tablets) so we need to order it in a Compounding Pharmacy and make it every month. Any idea if 10 MG/ML i.e. lower dosage in liquid format can be made available in Mumbai pharmacies? If available any idea about the cost?
Really appreciate your input and Thanks in advance for your response!


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## Madhu

Hi Hemant, I'm sorry your little one is going through this. Your questions are totally valid. My husband and I are on working visa too in the US. Few months back, we were making backup plans if we had to go back to india. 

1. There are doctors and hospitals for CD in India. I'm not sure where but you have to check. For my husband, we were going to ask my parents to take his reports to a GI in Chennai and check what kind of treatment they would provide there. Even if you're not moving back right now, it's a good idea to have a backup plan. Our situation has stabilized somewhat for now, so we are yet to check it out.

2. I'm sure there are developments in India and medications are available for CD. But right now I would stay in the US to continue treatment. That's what we are doing. 

3. I'm sorry, I don't know specifics about meds there but i do know that insurance works differently in India and we may have to shell out a lot out of pocket compared to here. 

I wish your family good luck. Try checking practo.com, I found few doctors in Chennai treating CD.


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## Hemant

Thanks Madhu and really appreciate you taking out time and responding to my queries. Yes, I am working on my backup plan and hence collecting the information as much as I can. I am so much worried because of her age and the whole life in front of her. Question on Remicade. Is it covered by insurance in US? I am sure insurance in India do not cover any medicines but only hospitalization I believe. Any idea about the cost of these medicines in India? Thanks again!


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## Madhu

Hemant said:


> Thanks Madhu and really appreciate you taking out time and responding to my queries. Yes, I am working on my backup plan and hence collecting the information as much as I can. I am so much worried because of her age and the whole life in front of her. Question on Remicade. Is it covered by insurance in US? I am sure insurance in India do not cover any medicines but only hospitalization I believe. Any idea about the cost of these medicines in India? Thanks again!


Yes Remicade is covered by insurance in the US. It's an outpatient process and no matter the cost of the medicine, what we pay depends on the insurance plan we have, as I'm sure you're aware. In India, I know that insurance doesn't cover unless you're hospitalized but I don't know how they would bill remicade. Maybe as a chemotherapy session? Because here, they submit claims that it's a chemotherapy treatment. So that might help in India, I guess. There was one person in India on this forum few years back. He was taking remicade in Nagpur. He told me that it costs around rs 32000 per vial and if we get it directly from the manufacturer, it costs a bit less. Again we will have to think about how many vials would be needed. 

It's all a big headache, but having a backup plan is the right thing to do. Please update here if you get any information from India, so it will help others as well. Also, I know pediatric crohn's is said to be worse than adults, your little one is strong. I'm sure she will pull through it.


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