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Diagnosed with crohn's last week

Hi friends,

I dont know how to start. I never heard of this disease before. never knew something like this existed before. I am 23 years old energetic guy living in kolkata, India. Life was so cool until last yuear when I started having a lot of gas in my stomach,heartburn and breathing problems. started taking medicines for gas but it didnt help..constant pain in the chest due to gas lead me to belive I had heart problem for which hudred of tests including ct scan,holter ecg were done..everything came fine. But still the pain didnt go away and always had the bloated stomach. after suffering for 1 year with that and no clue of what I was suffering from..finally went to a gastroenterologist who confirmed after an endoscopy and a colonoscopy that I had an easophageol ulcer and Infalmatory bowel desease...my biopsy report said Infalamatory bowel desease compatible with crohn;'s desease.

My doctor diodnt tell me what exactly it was but said I'll be fine in a year after taking medicines (perhaps he didnt want to upset me).

What really amazes me is that i had no basic symptoms f crohn's desease.
I never had dirrhea, vomiting, nausea or stomach ache or cramp. the only thing sI experienced was bloated stomach, gas and pain in the chest area due to gas. That sit.

currently I am on pentasa 500 mg ( 2 tablets 3 times a day ).
also my eosinophil counts was high (20%) for which I am also taking other medicine.

I am supposed to go to canada for a two years study course, and suddenly this has happened to me. I dont know wether I should cancel my tour or go ahead with it as i dont know whats in stire for me in the future.

I would like to know from the foru members that I have seen so many ads and claims on the internet that Crohn's desease can be treated some natural products and also diet and lifestyle changes..are those stories true ?

very depressed at the moment. feel like suicidal.
 
hi :)

first of all IBD is not a death sentence.. there is life with crohns.. you can still travel especially if you have no other symptoms..

second of all.. I NEED you to go and tell your doctor you feel so depressed.. please? You obviously know a little about depression for you to recognise it in yourself, you also will know that this is the point you need help.

I am sending HUGE crohnie cuddles over the waves from Australia to you in India :)
 

Jennifer

Adminstrator
Staff member
Location
SLO
We do take suicidal thoughts very seriously on the forum so we'd like to know if you're joking or if you actually feel suicidal.

As mentioned Crohn's is not a death sentence so stay in there! Most people require medication to stay in remission rather than sticking strictly with alternative treatments. So please listen to your GI doctor about their treatment options and figure out a treatment plan that works for you personally. Remission is a possibility for everyone so keep that in mind. Please let us know if you have any other questions, we're here for you. Welcome to the forum! :D
 

David

Co-Founder
Location
Naples, Florida
Hi there Sid and welcome to the forum :) I'm sorry you're feeling so down :(

How is the medication working for you? Is it alleviating your symptoms at all? If not, I would suggest heading back to the doctor as sometimes it can take a little while before finding the proper treatment regimen.

Not everyone with Crohn's Disease has the "stereotypical" symptoms. There are many factors that determine symptoms so everyone is a little different.

If your symptoms are under control, I'd personally go to Canada. Don't put your life completely on hold.

We're here for you bud :)
 
hi :)

first of all IBD is not a death sentence.. there is life with crohns.. you can still travel especially if you have no other symptoms..

second of all.. I NEED you to go and tell your doctor you feel so depressed.. please? You obviously know a little about depression for you to recognise it in yourself, you also will know that this is the point you need help.

I am sending HUGE crohnie cuddles over the waves from Australia to you in India :)
Thanks you Leebie.

I am gping to study hotel management in canada. its a two years certificate course. Although I know I have crohn's now, the only thing that is like a ray of hope for me is that I dont really have very bad symptoms..al I am facing now is the bloated stomach, gas..which is also getting better as I started to take the medicine. But whats pulling me down at the monet is the very thought of having an incurable desease. and also I am foodie (which is the reason I am into this line of hotel and catering), so i dont know how I'll cope up withthe diet changes,etc. sounds silly, but here in India...we are in love with our spices and spicy food. I know god ain't that cruel to me..but I cant take this, I got my parents to take care of who are already diabetecs and and my mom is also a heart patient. although I havent told them aboyut this.
 
We do take suicidal thoughts very seriously on the forum so we'd like to know if you're joking or if you actually feel suicidal.
I am no more what I was a week before. I havent got a single moment since then when this though has got out of mind...wethe ram sleeping,eating or whetever..I keep thinking about this. I know this is not the solution..but I just cant get this out of my mind.

As mentioned Crohn's is not a death sentence so stay in there! Most people require medication to stay in remission rather than sticking strictly with alternative treatments. So please listen to your GI doctor about their treatment options and figure out a treatment plan that works for you personally. Remission is a possibility for everyone so keep that in mind. Please let us know if you have any other questions, we're here for you. Welcome to the forum! :D
thanks crabby. I know I cant give up. I will talk to my doctor soon.
 
Hi there Sid and welcome to the forum :) I'm sorry you're feeling so down :(

How is the medication working for you? Is it alleviating your symptoms at all? If not, I would suggest heading back to the doctor as sometimes it can take a little while before finding the proper treatment regimen.

Not everyone with Crohn's Disease has the "stereotypical" symptoms. There are many factors that determine symptoms so everyone is a little different.

If your symptoms are under control, I'd personally go to Canada. Don't put your life completely on hold.

We're here for you bud :)
Thanks sir,

I am not sure about the main symptoms which I actually never had for which the Pentasa is prescribed. But I dont know about canada as of now..although I am supposed to apply for visa next week. although my parents want me to go. I think I'll go if that makes them happy..they are everything for me. I know my mom and dad should never come to know about this.
 
Hi Sid,
When i was diagnosed with Crohns is 1993, nobody gave me any information about it, and i was scared, i was 19. I had to get any scrap of information myself. Since then I have had two children who are now 24 and 21.
Two pieces of advice I would give you Sid. Find out all you can about Crohns. You can fight anything when you have the knowledge, and we have so much more knowledge and medication than was around in 1993.
The other thing is yes we do have a disease with no cure at the moment, so as much as we can we have to rule it, not let it rule us. Dont give up
Good Luck
 
HI Sid, I agree with Polar and everyone else too. When I was diagnosed last year it was the lack of knowledge that scared me. I thought I was on a roller coaster downwards and that my life would stop. I too am on Pentasa and you may be like me and have it only very lightly. There are some people who have it quite bad and so I would recommend getting out and enjoying life as much as you want too. Why should Crohns stop you? Dont let it. I would love you to go to Canada and enjoy it as I think it may be something you regret if you dont. I still eat a fair amount of what I like although I cut out nuts and wholemeal foods but generally I am ok with everything. I have exams at the moment and am just extra careful at times I think I may get stressed as that seems to bring on an upset stomach. Please please dont give up. You can always come on here to find out more and the more you know the less frightened you will be. If your doctor has not given you any information on Crohns then I think that is quite naughty. Mine was a little like that but did give me reading info and a link to this forum at least. Please talk to him if you need to and tell him how you feel. You are one of us now and that is good thing cos we make a damn good team! :hug:
 
Sid, I was diagnosed over 8 years ago and I have had a lot of symptoms but you have to try and be stong. You are not just your illness, it my not seem like it at the moment, but I would suggest you think to your future, Canada is a modern country with other people who have Crohn's disease. Maybe you could contact a local support group in the area you would be living. I try not to let my Crohn's get in the way of my life. Since I was diagnosed I have completed my studies including a university course and have travelled to many different countries, India 3 times, Tunisia twice, Egypt, Turkey to name a few and in November I am going travelling to Vietnam and Cambodia. It's all about being sensible and being prepared.

You can still be whoever you want to be - crohn's is just a little complication - don't let it take over your life.
 
@ Terri_ann87 , Goldfish and Polar1920 :

Thanks a lot guys...and I mean it. and belive me I am smiling while writing this :)

I think these psost of yours has worked as a magic in a moment. I think I feel much better now and I know this desease is atleast something that can't rule me :dance:. I know I can't cure it, but I can manage it. Its is now clearer to me that crohn's is more like diabetes...which again has no cure but its upon how you control your lifestyle and diet. Thanks a lot friends...and I think the best part is that I now have discovered this forum..and that way I have hundreds of friends like you to guide me whenever I need any information or help. :ysmile:

So what are the things I can have guiys..I mean usually what are the thing that could harm me in the long term..which food items should I avoid ??
 
we're here with you Sid :)

Have a wander through the forum .. there's a LOT of good threads where people are looking for what to avoid.. mostly it's individual but I have noticed that popcorn is bad for a lot as is red meat.. I'm sure there are a heap of other things but have a look around :)
 
^^^Thanks leebie..I'll explore more on this amazing forum...ok No popcorn then :)
and am anyway not a meat lover and we are a vegetarian family..at most I have fish sometimes. May be thats one of the reasons why my symptoms are not that bad.
 
could well be! :)

for me, muesli makes the pain unbearable.. I can't have grains, wheat, oats, nuts or dried fruit.. all the good things in my favourite muesli :-( Ahh well.. I love banana smoothies too ;-)
 
I have to avoid orange juice and caffeine, but they have brought out caffeine free cola and decaffeinated coffee is better for you anyway. I eat pretty healthy, even have a curry now and again. Everything in small amounts.
Glad your feeling more positive Sid. Goldfish is right, find out as much as you can about Crohns it helps to take the fear away.
You have Crohns, manage it and carry on planning your life Sid xx
 
could well be! :)

for me, muesli makes the pain unbearable.. I can't have grains, wheat, oats, nuts or dried fruit.. all the good things in my favourite muesli :-( Ahh well.. I love banana smoothies too ;-)
But that almost takes away most of the healthy things off the list :(

But bananas are good....try fresh fruits...in case you like vegetables...justtell me..I have hundreds of vegetable recipes that you would love to eat and also they are good for you. infact try having celery..that would help a lot.....and the best part...Do Yoga and mdeditation..belive that works wonder. India as you might know is home to spiritual gurus and the yogis...I have a yoga guru as well..with whom I am working on meditations and within last 3 days I have seen a huge difference. try them, if you can and just tell me if yo need any help or information regarding that.
 
can't stand celery but I would LOVE some vegetarian recipes if that's ok please?

I love
pumpkin,
potato (although a lot of potato upsets my tummy),
kumara (sweet potato),
new zealand yams,
tomato (they upset me if I have too many as well),
broccoli,
cauliflower,
corn (LOVE corn!),
peas,
beans (butter beans in particular),
capsicum,
carrot,
zucchini/courgette
eggplant
parsnip

can't think what else (am adding as i think of more).. is that a good list to start vege dishes?
 
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can't stand celery but I would LOVE some vegetarian recipes if that's ok please?

I love pumpkin, potatoes (although a lot of potatoe upsets my tummy), kumara (sweet potato), new zealand yams, tomatoes (they upset me if I have too many as well), broccoli, cauliflower, corn (LOVE corn!), peas, beans (butter beans in particular), capsicum,
can't think what else.. is that a good list to start vege dishes?
Is that all ?? lol

Ok I'll send you a list of vegetables and their recipes..which I am sure You would love..especially if you're having them for the first time..the best part is that its not needed to be made specially for people like us..the whole family can have them. Cauliflower and broccoli gives me gas, but they are great if you like them..and they are easy to make too.

lemme give yo my list...

potatoes
brinjal
ladies finger
Bottle gourd (its the best vegetable for our general health)
spinach
lettuce
cabbage
bitter gourd
beetroot
carrot
radish
beans
green mustard (my favourite)
peas
:ytongue:

give me some time..I'll send you the recipe for these healthy vegetables...they are best for your stomach...and you will also not be deprived of the nutrients that you need.
 
Just one more think Sid. Remember that what doesn't suit me may easily suit you. You have to test things a bit and see what does and doesn't work. I steer clear or nuts, seeds, anything wholemeal and definitely caffeine and i think corn may cause a little upset but I love it and eat it anyway OOPS. This does not mean you will be the same at all! Keep a diary for a while and perhaps eat what you want writing down everyday what you have eaten and how you feel afterwards. Its a bit long winded but it helps. I started with that and lapsed then when I felt I had a good idea.
 
Just one more think Sid. Remember that what doesn't suit me may easily suit you. You have to test things a bit and see what does and doesn't work. I steer clear or nuts, seeds, anything wholemeal and definitely caffeine and i think corn may cause a little upset but I love it and eat it anyway OOPS. This does not mean you will be the same at all! Keep a diary for a while and perhaps eat what you want writing down everyday what you have eaten and how you feel afterwards. Its a bit long winded but it helps. I started with that and lapsed then when I felt I had a good idea.
Thats actually a good idea..never thought about that. will definitely do it....
 

Jennifer

Adminstrator
Staff member
Location
SLO
Its is now clearer to me that crohn's is more like diabetes...which again has no cure but its upon how you control your lifestyle and diet. Thanks a lot friends...and I think the best part is that I now have discovered this forum..and that way I have hundreds of friends like you to guide me whenever I need any information or help. :ysmile:

So what are the things I can have guiys..I mean usually what are the thing that could harm me in the long term..which food items should I avoid ??
I wouldn't compare it to diabetes in that sense. Sure some diabetics can control it with diet and exercise but there have been no studies that show diet and exercise can keep someone with Crohn's disease in remission. Many people have tried on this very forum yet they still have issues. Many on the forum have gone off their meds (myself included) and have had to be hospitalized. I'm sorry, but you cannot control the illness with jogging and/or by eating less processed foods. Your immune system is what's not working properly so no matter what you eat or don't eat your body will still be affected. Medication has shown to be your best line of defense. Remember that many people used to die from Crohn's because it went for so long without treatment and people can still die today if they leave it untreated. I almost died because I was undiagnosed and without treatment. You need medication, end of story.

If someone posts and says that they can't tolerate fish then does that mean you should avoid it? No, that doesn't even make sense. What people can tolerate during flares is always different so in this area what you'll want to do is make your own personal food diary and once you're in remission, you should be able to completely ignore that food diary because there is no proof that food causes flares. It can cause irritation but that will go away after the food passes. This irritation though is not inflammation caused by Crohn's nor will it spiral out of control and into a flare. If you think that eating those nuts caused your flare, you would be wrong and inflammation takes time to form and you were more than likely getting sick before you even ate that one item you though started your flare.
 

David

Co-Founder
Location
Naples, Florida
This is an area Crabby and I disagree quite a bit, but respectfully :)

For example, there are many studies that show enteral nutrition can induce and help maintain remission.

But I'm of the opinion that a combination of western medicine and diet/lifestyle changes is the best bet for people with IBD. Hit it from all angles to completely reduce inflammation and promote mucosal healing.
 

Jennifer

Adminstrator
Staff member
Location
SLO
"and also contain anti inflammatory ingredients." http://www.crohnsforum.com/wiki/Enteral-nutrition. Doesn't sound strictly like food especially if meds are included plus what it really is is gut rest. A lot of doctors try that right off the bat and yes it does reduce irritation that food can cause as it scrapes by an already inflamed bowel. Doesn't matter if you were eating Cheeze-itz or rice before starting EN therapy as its like nothing at all is passing through. EN is considered a treatment even though it doesn't work for everyone but neither do some meds.

The main point I was making was that often times the disease gets out of control and is too far gone and often times even the strongest medications fail to stop or reverse the damage that's been done. When this happens people often require surgery to remove the section/s that are out of control. Medications are your strongest line of defense when it comes to an overactive disease and do it quickly. Changing your diet may help with some symptoms but will not stop the active inflammation nor prevent it. I have no problems with the use of EN but do know that it is not as strong as the multitudes of medications out there (especially if they are adding anti inflammatory agents to it). I was on gut rest for a month and I only got sicker. By any means use whatever works.
 

David

Co-Founder
Location
Naples, Florida
No "anti inflammatory medicines" are being added to OTC enteral nutrition. MANY foods have anti-inflammatory properties. Conversely, many foods have inflammatory properties.

There are many theories as to why enteral nutrition works as well as it does, but the "gut rest" one isn't very strong as enteral nutrition works just as well as TPN (nutrients directly into the blood stream) which would be resting the bowel MUCH more.

Studies have shown that enteral nutrition starts working FAST and VERY WELL. For example, after just three days one study found children had significant improvement in erythrocyte sedimentation rate (ESR) and within 7 days, C Reactive Protein (CRP) dropped significantly as well.

Enteral nutrition not only stops active inflammation, it prevents it.

But again, in a disease like Crohn's Disease where reducing inflammation to avoid malabsorption and the build-up of fibrotic tissue leading to strictures and worse complications is of utmost importance, hitting it from all angles is important in my opinion. Just medicine or just diet or just lifestyle changes are only using a small portion of the arsenal at our disposal. We should nuke the bastard from orbit.
 
Thanks Crabby and david for the info....but guys you know whats the case with me ??

I have never experienced irritation or inflamation of bowel...may be currently the damage is not that extensive..or may be it is just the start of it...the colonoscopy says crohn's...and I belive my docs..they want me to continue with pentasa 500 as they say its gud for me in the long run...but I realise the medicine basically helps with inflamation.so if thats the case then.. am not sure wether I should contiue that or not as I dont feel any of those symptoms at all (not yet)..so why get affected by the side effects of it (if any)...may be i can use it in future if need arise??
 

David

Co-Founder
Location
Naples, Florida
What makes you say you don't have inflammation of the bowel if your colonoscopy came back positive for Crohn's Disease?

Keeping inflammation in check is of vital importance and the Pentasa can help with that. If you let inflammation become chronic, it can lead to scarring which can lead to a whole host of issues. So be proactive rather than reactive. Don't wait until it gets bad.
 
Hey Sid I noticed you thanked my info out there and looked you up. I read this and still have a lot more to read about your story. It sounds to me like you like food and that is totally awesome bc you can totally eat and people are looking for a direction to go with IBD dieting. There are a lot of food out there that do have antiinflammatory properties and there is Gluten free and SCD dieting which is hard to navigate around and along with many vegetarian IBDers that need their daily fill of protein. This might be a calling for you, I would take that and run with it. You seem like a smart and very motivated guy and I think you should take this moment to reflect. What doesn't kill us makes us stronger and I think you will do great things. Sorry you have Crohns, but it will become your new normal before long and you won't have to think about what to eat after long. It is just a process to get all the information loaded and retained.
Best of luck to you!
 
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