Crohn's Disease Forum » Support Forum » Crohn's indians Support Group


 
04-29-2016, 11:46 PM   #31
alchemy
 
Join Date: Aug 2012
Location: San Jose, California

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Agree, so great to see a community here and we are all in this together.
04-30-2016, 12:35 AM   #32
alchemy
 
Join Date: Aug 2012
Location: San Jose, California

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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..
04-30-2016, 01:14 PM   #33
alchemy
 
Join Date: Aug 2012
Location: San Jose, California

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On diet:
http://nutritionfacts.org/video/prev...ase-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_dise...tional_therapy

You can also get his book from Amazon

Last edited by alchemy; 04-30-2016 at 07:34 PM. Reason: adding more info
01-21-2017, 06:16 AM   #34
ravioliyears
 
Join Date: Jan 2017

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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.
03-30-2017, 09:55 PM   #35
venkat
 
Join Date: Feb 2017
Location: India

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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.
03-31-2017, 06:41 AM   #36
mellyag
 
Join Date: Mar 2017
Location: Mountain View, California

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Yes agree lets invite all Indian here
08-17-2017, 04:09 AM   #37
Newhope123
 
Join Date: Mar 2017

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Hi guys,
How you all are doing?
Just found out this group. Any improvement with conventional or alternative medicine?
08-17-2017, 12:18 PM   #38
shankar
 
Join Date: Dec 2015

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Doing great. how are you doing? I don't believe in alternative medicine. so just hanging around.
08-17-2017, 09:26 PM   #39
Newhope123
 
Join Date: Mar 2017

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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.
08-21-2017, 12:48 PM   #40
Madhu
Senior Member
 
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Join Date: Jul 2015
Location: Texas

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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.
__________________
Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
02-22-2018, 12:23 AM   #41
Hemant
 
Join Date: Feb 2018

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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!
02-22-2018, 06:15 PM   #42
Madhu
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Join Date: Jul 2015
Location: Texas

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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.

02-23-2018, 12:10 AM   #43
Hemant
 
Join Date: Feb 2018

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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!
02-23-2018, 07:58 AM   #44
Madhu
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Join Date: Jul 2015
Location: Texas

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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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