The diagnosis is in

[sniffles]

Your body should adjust to the new meds, although it may take a little time. If the tiredness bothers you too much, talk to your doctor. And don't let them get away with telling you it's just something you have to live with. A pharmacist can give you good information about medication interactions, too.

Check out some websites for Crohn's, too. They'll probably have forums where you can talk to other sufferers and get suggestions for lifestyle adjustments and questions to ask your doctors.

 

[Cthulhu's Librarian]

Glad to hear that you got a diagnosis. Best of luck in getting it under control.

 

[Treebore]

I hope your body responds to the drugs well, and I especially hope the disease responds well. Catching it early doesn't mean anything. What matters is if the drugs control the disease. If it does, great! If they don't, well, you read the pamphlets.

So are they still using prednisone (or any steroid) and azulfidine (or any super-aspirin) as their primary method of treatment? Or are they using the new drugs that have come out in the last two years on you?

I only met one person who used the new drugs, after being unsuccessful with Pred. and Azulf., they felt like the drugs helped, but they still got worse and ended up with the extreme surgeries.

Also, if they said it is in your Colon you may want to get a second opinion. If it is in your SI then they are probably correct. They could still be correct if it is in your Colon, but a fair number of "specialists" have been found to say it is Crohn's when it is actually Ulcerative Colitis. Since the drugs differ significantly, if your Doc is wrong you will end up needing severe surgery just to save your life. So consider getting a second opinion, of a doctor your primary doctor doesn't work with, but is a Internal Medicine specialist on Crohn's disease.

Also, if your Doctor isn't a specialist, then there is good statistical reason to doubt his diagnosis, non-specialists mis-diagnose Ulcerative Colitis about 30% of the time as being Crohn's. Like I said, if it is in your S.I. and not your Colon, then he is over 90% likely to be correct, whether he is a specialist or not. If it is in your Colon, I very, extremely, strongly recommend a second opinion.

I also very strongly recommend you limit your diet the way I said to in the other thread until your "flare up" is totally under control. If you like the idea of those surgeries so much, then go ahead and keep eating normally. Otherwise a "normal" diet is total BS, so severely limit what you eat, carefully experiment to find things that don't agravate you. I can tell you right now, get rid of bread and all other grain based foods, except JAPANESE rice. Also get rid of milk. Cheeses may be OK, probably yogurt too, but straight milk your just begging for it.
Also stay away from grease. Greasy steak, pork, bacon, chicken, etc... is out. You shouldn't be eating much meat anyways, especially beef and pork products.

So restrict your diet until it is under control. When you find foods tempting you just visualize those nasty surgeries if the Crohn's isn't brought under control. Then realize your "imagination" is off by a factor of about 100 times, and don't eat.

Good luck, and I'll be praying for you.

 

[jaerdaph]

Glad to hear you finally got some answers so you can regain control of your life and your health!

Get well!

 

[Mycanid]

Good luck to you Ghostwind....

 

[Ghostwind]

So are they still using prednisone (or any steroid) and azulfidine (or any super-aspirin) as their primary method of treatment? Or are they using the new drugs that have come out in the last two years on you?

They have me on Endocort (9 mg) for the steroid.

Also, if they said it is in your Colon you may want to get a second opinion. If it is in your SI then they are probably correct. They could still be correct if it is in your Colon, but a fair number of "specialists" have been found to say it is Crohn's when it is actually Ulcerative Colitis. Since the drugs differ significantly, if your Doc is wrong you will end up needing severe surgery just to save your life. So consider getting a second opinion, of a doctor your primary doctor doesn't work with, but is a Internal Medicine specialist on Crohn's disease.

Also, if your Doctor isn't a specialist, then there is good statistical reason to doubt his diagnosis, non-specialists mis-diagnose Ulcerative Colitis about 30% of the time as being Crohn's. Like I said, if it is in your S.I. and not your Colon, then he is over 90% likely to be correct, whether he is a specialist or not. If it is in your Colon, I very, extremely, strongly recommend a second opinion.

The doc is a specialist and the blood tests test for the genetic markers. It's a relatively new test and leaves no doubt about the diagnosis. It is located in the small intestine in a very specific area so they are confident that the Endocort combined with Pentasa and the two meds I was taking before (aciphex and zegerid) will do the job. I go back in 4 weeks for a checkup but should be feeling better long before then if the meds do their job.

 

[Treebore]

That is very good to hear, especially that it is in such a small area. Sounds very likely to be controllable. New genetic marker test? That is very cool. Definitely sounds very encouraging. I would still limit your diet until the thing "cools down", and you definitely know what I mean by that!

 

[William Ronald]

Ghostwind, at least you have an idea of what to do now. So, take good care of yourselfand I hope that you have a blast at Origins!

 

[Ghostwind]

Thanks. Origins was great in that I got to see some good friends and buy some great books. However, it was very tiring.

 

[bytor4232]

After a brief visit to Wikipedia to find out what the heck Chrons desiese is, and the subsequent wish that I never did that, I have to say, your in my prayers. I hope you have a speedy recovery, or at least strength to deal with it if its permanent.