Recent Crohn's Diagnosis, Any advice needed

[AlphaGenetics]

Hello,

I am 22, male and live in the UK
I am fairly new to all of this, and never been ill before so not sure really what to expect.
In December 16 I suddenly got quite ill, very run down and lost a lot of weight, I kept putting of going to the doctors but eventually my stomach swelled up, I had a lot of pain eating and stopped going the the toilet.
When I did go the the doctors, he sent me to hospital, and they did a ct scan which showed inflammation in my terminal illium. My blood showed a high amount of white blood cells and also some sort of infection.
They gave me a steroid, prednisolone, asacol and anti-biotics
I was in hospital for a total of 5 days, when I was released I carried on taking the steroids for 6 weeks and the asacol for the same amount of time.
The steroids where horrible.
A colonoscopy showed a healthyl colon but an abnormal terminal illium with some inflamation.
A further CT scan showed there was no other infected areas in my small intestine.
The inflammation and the biopsis showed enlarged cells that indicated Crohn's.

The thing is, I have never had any symptoms before in my life (apart from when I had to go into hospital) and continue to have no symptoms to this day.
I don't have any loose stools and go to the toilet maybe two/three times a day. I am back to the same weight I was before and eat pretty much anything with no problem.

I am not taking any medication at the moment, although I think they want me to start taking azathioprine (which i've heard can cause cancer)

I am very confused about it all, could it have been a mis-diagnosis, or just a one off type of thing.

And should I start taking the medicine, I have read some posts that there can be no symptoms and all the while it is infecting everywhere in my gut...

If I don't take the medicine could you recommend any type of diet that might stop it from coming back?

Sorry the question is a bit all over the place but any information or advice would be greatly appreciated, I am pretty lost at the moment, and it's quite an embarrassing subject so I don't like talking about it to any one,

 

[ronroush7]

Hi. It could be you have a mild form of the disease right now. There could be damage going on inside of your body that you are not aware of. There is also a section in here called Diet, Nutrition and Fitness. You might want to check it out to see if there are any suggestions for diets.

 

[AlphaGenetics]

Thanks for taking the time to respond, so do you think I should start taking the azathioprine?

 

[ronroush7]

Yes, I do

 

[cmack]

Hi Alpha,


Welcome to the forum. I wish you didn't have crohn's disease.

If this is any help, I was told by my doctor that if I chose to do nothing to control my disease and the inflammation it causes, it would turn cancerous eventually. You should take this into consideration.



Welcome again, feel free to come here and talk any time,

cmack

 

[AlphaGenetics]

Hi Alpha,


Welcome to the forum. I wish you didn't have crohn's disease.

If this is any help, I was told by my doctor that if I chose to do nothing to control my disease and the inflammation it causes, it would turn cancerous eventually. You should take this into consideration.



Welcome again, feel free to come here and talk any time,

cmack

Thanks for the reply CMack


I think I'm still in denial about it all to be honest,

I have read some terrible stories about peoples experiences online and dreading the things to come..
But at the moment the side effects from the drugs scare me more than the disease itself.

Is it a lifetime on drugs, will I be taking them forever?

In your opinion can it be controlled by a healthy diet?


And sorry for being morbid on a saturday night, but will my life be shortened, I read somewhere that the average is about 60 years for people diagnosed in their early 20's, when I asked my docter this he avoided the question..

Again, thanks for taking the time to answer.

 

[cmack]

Hi Alpha,

In some cases if people choose to do nothing about what is going on inside their gut, their lives can be shortened significantly. After a lot of surgery and rest, along with moderate exercise, I have found that eating better has kept me in remission so far.

First you need whatever it takes to achieve remission, Surgery, medication, etc. Then it is possible that diet can help to keep you there. It never hurt anybody to avoid GMO's and steer towards easily digested fruits and vegetables. I steam my veggies. I also make smoothies with organic soy or almond milk and apple, pears, bananas kiwi etc. I put baby organic spinach or mixed greens in my smoothies as well, sounds yucky but it tastes good. It seems that living an organic vegetarian lifestyle helped me greatly. pm me if you want more info.

Wishing you the best,

cmack

 

[ronroush7]

You might keep a food diary to see what foods upset your stomach

 

[cmack]

I agree. A food diary can be very useful.

 

[scottsma]

I agree with all of the above recommendations.It's to soon to make the decision NOT to take meds.Your inflammation needs to be 100% under control before you make that decision.Please try not to think the worst about your future.I was diagnosed in 2006 and am not taking any meds at the moment.I'm quite fit and of normal weight.I'm careful with my diet and have learned which foods will make me ill.You will read a lot of horror stories regarding crohns and it's true that many people are very ill because of it.But it's also true that we are all different,and there are also many people holding down jobs,going to school.raising families and generally living a full enjoyable life.I wish you well and you've come to the best crohns forum on the web for advice and support.

 

[AlphaGenetics]

I agree with all of the above recommendations.It's to soon to make the decision NOT to take meds.Your inflammation needs to be 100% under control before you make that decision.Please try not to think the worst about your future.I was diagnosed in 2006 and am not taking any meds at the moment.I'm quite fit and of normal weight.I'm careful with my diet and have learned which foods will make me ill.You will read a lot of horror stories regarding crohns and it's true that many people are very ill because of it.But it's also true that we are all different,and there are also many people holding down jobs,going to school.raising families and generally living a full enjoyable life.I wish you well and you've come to the best crohns forum on the web for advice and support.

Thanks for your advice,
It's good to hear that you are doing well.
I have a doctors appointment in a couple of weeks, and have a lot of questions, slightly in limbo at the moment, so hopefully will be able to clear a lot of stuff up.

I will start a food diary, and begin eliminating things from my diet, and also start the medication.

I thought that if I can get my body into good shape through diet and fitness then, hopefully I will stand a better chance and deal with it better when it decides to come back.

On the brighter side, I've been able to make some pretty good puns lately!

Talking to all of you all has made me feel a lot better about it, so thanks to all three of you for your time and your help, I wish you all the best!

 

[cmack]

Hi Alpha,

I hope you are doing OK. I am thinking of you bud.

 

[Betterwithvideogames]

STAY AWAY FROM HOTDOGS AND SAUSAGES, ANYTHING WITH CASINGS!!!!!!!!Processed foods are a huge no no! I've found that I can't eat cereal either, nuts and seeds probably good to stay away from too. Also keep an eye on your acidic food intake, Crohn's and heartburn egg each other on like siblings on a road trip.

 

[cmack]

I agree that processed foods are not good at all. You should avoid them. The rest, (example) cereals should be non GMO. There is an off chance of trouble with seeds. I agree to disagree in other words.

 

[AlphaGenetics]

Hi BetterWithVideoGames

Yes I've had quite a problem with sausages as well
In fact most fried fatty foods have had me running to the loo for a couple of days! Nuts haven't been to bad, thanks for the advice about acid foods, I hadn't thought about that but it makes a lot of sense.

Hi Cmack
We don't really have GMO's in England at all except I think some imported meat may have been fed with them,

I've taken your advice about the vegetarian diet, been eating a lot more fruit nd veg and substituted red meat for quorn, and actually prefer the quorn it's pretty good stuff! I think I will go completely vegetarian/vegan in the future.

Also tried adding ginger and turmeric to my food which I've heard is meant to be quite good

I hope your having a good weekend

 

[cmack]

Thanks Alpha,

I hope you are feeling well soon bud.

 

[cmack]

Hey Alpha,

How are things going? Give us a shout bud.

 

[Jojo9368]

yes It is all very over whelming. I've been dealing with it for 17 years. I wrote everything that has helped me at crohnsnhope.com, I would search crohns and hope but only came up with stories of hopelessness. Once I kept a food diary and paid attention to my body and the pain, I was able to help myself. Hang in there. There is a good life with crohns disease, just maybe not the one you expected.