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Crohn's Disease Forum » Your Story » Need advice for better treatment of crohn's disease


07-30-2014, 08:29 AM   #1
krishna
 
Join Date: Jul 2014
Location: Hyderabad, India
Need advice for better treatment of crohn's disease

Hi All,

From last 9 months, I am suffering from pain in right side of abdomen. Before 6 months according to the reports pathologist said there might be tuberculosis or crohn's disease I am suffering. To find out this, I have consulted many doctors...And they had said, In INDIA there is no chance of getting Crohn's disease, So I should have Abdomen TB only. And they have given the treatment for abdomen TB three months. And while using the Anti TB medicines, I had suffered with severe Side effects like fever, Jaundice, severe stomach pain. Because of this side effects, even after changing the medicines 3 times , there has no improvement. Finally Doctor had advised to Undergo for Surgery. 2 Months before I have undergone for surgery and 25 cms of intestine(infected part of Large intestine and Small intestine) has been removed. After Surgery I have taken 20 days complete bed rest as it is Major surgery. Doctor has given medicines to prevent to occur Crohn's disease in future. He said that I have take these medicines for next 2 years.

From Last 35 days, I have started eating food. I am able to eat both veg and Non veg. Sad thing is still I didn't gain my weight. But I didn't had stomach pain this 35 days.

But from last 2 days, again stomach pain is coming after having food. I am worrying, is pain coming because of the food I am taking or is there any problem in my stomach only.

Friends, If any one had suffered with similar situation, Kindly advice what need to do.

Thanks
Krishna
07-30-2014, 08:35 AM   #2
nogutsnoglory
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I'm sorry to hear doctors dismissed your crohns. People in India can definitely get crohns and we have had quite a few members here from India.

What medication did the surgeon place you on after intestinal resection?
07-30-2014, 09:12 AM   #3
krishna
 
Join Date: Jul 2014
Location: Hyderabad, India
I forgot to mention in above thread, after surgery Surgeon had sent infected part of intestine to LAB for testing. And in reports they have double checked and confirmed I have crohn's disease.

As you said, people in india also can get crohn's disease.

And coming to medication, as per doctor's advice after surgery I have taken the below medicines for 1 week
==================
Monocef - O 200 mg, Pan 40mg, Zincovit
Hifenac - P (if pain comes---but stopped after 3 days as there is no pain)
==================

As per the reports from Lab, Doctor has confirmed I have Crohn's disease and he advised to take below medicines to prevent to occur crohn's disease in future
-------------------
Rowasa 1g---after breakfast and dinner
Azoran...after breakfast
------------------
I am taking above two medicines from last 30 days. As I mentioned above, from last 2 days again pain is coming and going.
07-31-2014, 04:08 PM   #4
Lady Organic
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Hi I hope you can find a gastro-enterologist who knows about crohn's and that you'll call back the first doctor who said crohns doesnt exist in India. he must be aware so not to commit the same error with other patients. Once you are on medication such as Azoran, you have to be closely monitored. Who is fallowing you now? Also if symptoms start again, you should inform a doctor as soon as possible. Azoran, if it works, can take up to 3 months to be effective, but you dont want to wait 3 months in pain and risking more damages. There are other medication to control inflammation on ponctual demand. In the meantime of seeing a doctor, i would encourage you to keep a food diary of what you eat as some food could trigger your attacks, especially if you mention getting cramps right after food. you could try avoiding some food groups for a while and see if it can help you, such as milk products, gluten, rafined sugars (white sugar, corn sirup...), etc... Try to chew as much as possible to maximize puree food and avoid unnecessary work for your stomach and intestine and eat small portions each time.
good luck
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07-31-2014, 04:44 PM   #5
Lady Organic
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also as I am thinking you are from India, try to avoid very spicy food as I know food can be extremly hot in India !!!
08-02-2014, 01:08 AM   #6
krishna
 
Join Date: Jul 2014
Location: Hyderabad, India
As you said, I will call back my previous doctor and let her know about Crohn's situation in India. As for now I don't have severe side effects with Rowasa 1g and Azoran, Iam using these medicines from last 40 days. But in 6 days, I got stomach pain(not severe) continuously 2 days. And Intially when I started to have these medicines, I have diarrhea. But now Iam feeling good.
Yes In India, people eat spicy food. As you said, I will avoid milk products also.
Doctor advised to eat Non veg, Iam also eating chciken, fish. I dont have any problems with that.

Could you please let me know can I eat Bread, Chapathi(wheat),
08-02-2014, 04:50 AM   #7
DustyKat
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Tagging sid.
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08-03-2014, 01:46 AM   #8
dajanes4
 
Join Date: Aug 2014
Sorry to hear you're having such problems. I had surgery (20cm removed) on March 24th. Exactly 8 weeks later had cramping pains and a CT scan which showed the "active crohn's" had returned. This is not unheard of, but really lousy luck! Maybe you should get a scan.

David
08-03-2014, 08:18 AM   #9
Lady Organic
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yes wheat has gluten, If you want to try excluding it from your diet. I must say I now prepare a lot of indian inspired food since 3 years I have been doing a pretty strict diet and my diet is nothing like the typical american diet anymore. I eat nothing already prepared in grocery stores with weird ingredients. I just love indian food and think you guys have the best flavors in the world. Everyday I eat vegetables, lentils and chickpeas curries (not much chillies inside) along with fruits and vegetables salads.
08-04-2014, 03:38 AM   #10
krishna
 
Join Date: Jul 2014
Location: Hyderabad, India
David, After the CT scan report, what did doctor advised. Did you undergone to surgery again or taking medicines to get crohn's cured.

Krishna
08-04-2014, 03:36 PM   #11
sid
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Hi Krishna,

sad to hear about your condition. It is really so weird to see people in India who have crohns are either from kolkata or hyderabad (90% of the crohns sufferers I know of atleast). Anyways, I am really shocked to know your doctor really said that because there are so many crohns sufferers in India. A biopsy should have revealed the crohns desease, and am sad to know you learnt it after the surgery. At this moment Krishna all I would say to you is that although Crohns disease is incurable at this moment, it is pretty manageable and you can lead a normal life with few changes especially with the diet we have available in India. The conditions in india is very suitable to manage this disease so you should not worry much...especially when you see forum members discussing their extra intestinal issues. Trust me you wont experience most of the problems.

Few things that you must do is:

1. keep in touch with your doctor and if needed please 'DO NOT' hesitate to change him/her'.

2. Keep track of your vitamin profile especially B12 and Vitamin D (vit D should not be a problem in India especially in a hot place like Hyderabad)

3. From personal experience I would suggest try going for vegetarian food as far as possible and avoid red meat.

Lastly Krishna, I would suggest , just don't loose hope and always try keeping a positive attitude, it definitely helps..the more your keep relaxed and have fun, the least this disease can bother you. And if you need any help or suggestion just send me a PM. Ll the best buddy !!
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08-05-2014, 05:29 AM   #12
krishna
 
Join Date: Jul 2014
Location: Hyderabad, India
Thanks for the reply Sid. It means a lot to me. How is your health now ?

Is there any good doctors who can treat Crohn's disease well. Because I can say my Doctor is good, But not very good.


Today only I have consulted my Doctor, He told that I need to use the medicines next 3 years to not occur the same Crohn's in future.

He has told to take Pentasa 1 gm also from today onwards.
08-05-2014, 06:51 AM   #13
dajanes4
 
Join Date: Aug 2014
Hi Krishna,

Hope you're feeling better! I told you I had a run of bad luck when the crohn's returned 8 weeks after surgery. I pretty much have been on prednisone ever since, Humira, Pentasa, and Flagyl. Hospitalized a week ago for another bowel blockage. Now that I'm back home, I am being very careful to stay on a low fiber/residual diet. My stomach continues to be very distended and bloated. I am considering traveling to either the Mayo or Cleveland Clinic - must get this flare under control!

David
08-05-2014, 01:09 PM   #14
sid
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Thanks for the reply Sid. It means a lot to me. How is your health now ?

Is there any good doctors who can treat Crohn's disease well. Because I can say my Doctor is good, But not very good.


Today only I have consulted my Doctor, He told that I need to use the medicines next 3 years to not occur the same Crohn's in future.

He has told to take Pentasa 1 gm also from today onwards.
I am doing great krishna...I too was very frighetened when I was diagnosed first but now I am as good as I ever was.

pentasa is good to keep the inflammation in check...keep taking it as your doctor says...just make sure you drink a lot of water throughout the day, make it a strict habit...Pentasa was the only medicine I took that too for few months before I stopped taking any medicine...but the crohns I suffer from is a mild one..but you be sure to take all your medicines and always consult your doctor before any changes in the diet or med, that will help you in the long run.

and yes there are lot of good GI in india..infact the one who sees me is an amazing doctor and totally understand my condition. an online search will give you many results for your search of good GI in your city.
08-06-2014, 03:57 AM   #15
krishna
 
Join Date: Jul 2014
Location: Hyderabad, India
Thanks a lot for all your devices in above posts....From today onwards I have started also strict diet, eating vegetable salads. Fruits, eggs, weekly once chicken with less oil and no spicy(for keeping the weight) As my weight is not increasing after surgery.....Before 10 months My weight is 64 kgs...Now 54 kgs...
08-08-2014, 06:44 AM   #16
krishna
 
Join Date: Jul 2014
Location: Hyderabad, India
Hey Sid, Could you please share what diet you are following?

Also Is drinking tea would affect our health ?
Because you know tea is the most common drink in India.
08-08-2014, 10:48 AM   #17
sid
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I keep making changes to diet Krishna, i regularly keep adding new stuff and removing some for some time..I found this process helps me keep fit and maintain a healthy weight. Primarily its a vegetarian diet with lot of fruits and juices. But there are other things that learn from this forum and other friends as well and keep adding them.


in lunch its mainly Rice (it is easy on stomach than roti) with a different type of vegetable everyday, mostly its karela, lauki, parwal, and different kind of saag...especially saag I love them and full of cholorophyll (you might want to grind the saag as its very fibrous so it may not suit you).
atleast twice a weak I have khichdi with a lot of different vegatbales and bhartas (aloo, baingan, tamatar, kareka etc )

For dinner its roti/rice with some vegetable curry or dal. I lke different dal with a strong tarka..and if you can tolerate ghee just pour in some pure desi ghee...I make sure to have a lot of Raw Onions with each meal..pure desi style ..initially that gave me gas but later on it was ok).. also add soya chunks if you like them regularly, it is full of protein, definitely helps.

For snacks I mainly have Dosa, Idly or dhokla, fruits and fruit juice....these are fast food but healthy.

So you see Krishna whatever I have listed there, is something you alreasy are used to, so you will not miss anything and all these are Crohns friendly with no gluten or preservatives..all are home made (dosa,idly and dhokla I buy from a fast food centre on the street, but then you get it in every corner India.

Few things I make sure I have everyday:
Turmeric tea (twice)
Fruits juices including lauki
a pomegranate a day
amla - either chutney or juice mixed with other juices that i have (usually i put int wo amla with other fruits when I am juicing in my juicer).

and as you can see my signature I am not taking any medicine but I keep taking Vitamin B12 injections and Vitamin D3 gel capsules as prescribed by my doctor after the tests.

---------------------
about your second question Krishna on tea..sadly many of us with crohns cant tolerate neither milk nor caffein and chai contains both. so if you can tolerate it, you can definitely have it....I personally miss masala chai a lot...i am currently trying a green tea with prbiotics, so far it seems good. If you want you can replace the cow milk with almond or soya milk for your chai..it will be equally good.
08-11-2014, 07:37 AM   #18
krishna
 
Join Date: Jul 2014
Location: Hyderabad, India
For Dinner, you were eating Roti which contains Wheat or Jowar ?
08-11-2014, 11:05 AM   #19
sid
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For Dinner, you were eating Roti which contains Wheat or Jowar ?
I make it from multigrain sometimes and sometimes atta from local chakki..the wheat in the roti is somehow easily tolerated as we make the dough using hot water...although wheat cant be sugar or gluten free it is way better than white bread..infact even better than brown bread and very healthy. Keep in mind that few people cant tolerate jowar..but if you can,you must include it..its super healthy.
08-14-2014, 02:55 AM   #20
krishna
 
Join Date: Jul 2014
Location: Hyderabad, India
Thank you very Much Sid for the above info.

Is there any issue eating Dates for crohn's. Did you tried ?

Regards
Krishna
08-14-2014, 08:48 AM   #21
Lady Organic
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dates are super good to make deserts. I use soaked dated and nuts and mix it in pureed balls in the fridge. super good. Soaked dates can be a replacement for all types of sugar in any recipe, just mash it and incorporate it. Personal sensitivities to any foods are quite common and not only in CD. If you notice your symptoms gets worst after eating dates, that will be a red flag for you.

Asafoatida a common spice in India contains gluten often. If you use it, check for filling ingredients. Also about frying. You can try gently boiling your meat instead. Deep frying is harder to digest than boiled. the best way to eat meat is really to boil it gently in a stew with veggies for instance.

I do hope food approach will bring you some help. It does for a lot of people with crohns. However keep in mind it might not resolve your situation. I fallow an extremly strict diet since 3 years and I still have to take very strong meds otherwise I get really sick. I diet now for my general health knowing I have flaws in my digestive track and must take the best care for myself for the future. seems like logics for me. I diet for a general future health purpose. I refuse to give my crohns and body crap food and food I know are unhealthy anymore.
let us know how you are doing.

Last edited by Lady Organic; 08-14-2014 at 07:47 PM.
08-14-2014, 01:41 PM   #22
sid
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Thank you very Much Sid for the above info.

Is there any issue eating Dates for crohn's. Did you tried ?

Regards
Krishna
ye i did try it and it wasnt really a problem for me.
08-16-2014, 06:51 PM   #23
Cla
 
Join Date: Aug 2014
Has anyone tried alternative treatment methods?
08-02-2017, 11:16 PM   #24
abhishek
 
Join Date: Jul 2017
Location: patna, India
Hi sid and Krish how are you now bro can you tell me best doc for ibd in patna
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