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Crohn's Disease
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Posted 12/3/2007 3:32 PM (GMT 0)
Hello all,

I found out last Friday that I have Crohn's Disease. I feel very angry and scared. I had not heard of Crohn's Disease until last Friday and I have many questions. I hope this forum is a place for me to ask noob questions.

My number one question atm is, can Crohn's kill me?
My doctor said this is very serious and could be fatal. He also gave me one website he said had trustworthy information on it about the disease. I went there and read that Crohn's Disease "is not considered a fatal illness." I am confused.

Thanks,
lug
Posted 12/3/2007 3:46 PM (GMT 0)
Hi Luglug,

I'm sorry about your diagnosis, but as you can see from reading our posts we've all been there at one time or another.

A diagnosis of CD is not a death sentence. There was just a discussion recently about mortality with Crohn's Disease, and while your life expectancy may be a little shorter than the general population, the new treatments that are available have increased life expectancy over the years.

You have many options for treating your disease, the first step is to have a good relationship with your gastroenterologist. You will probably need to be under the treatment of your GI for the rest of your life, so choose one you can talk to and who will listen.

Read this forum, but just remember every patient is an individual and treatment protocols should be tailored to you and your personal needs.

Also understand that a lot of the people on here are here because they've have severe disease and are looking for support and answeres, but that doesn't mean your disease will be or will become severe. Some people with this disease live a full, productive life and the disease has little impact on their daily living.

So talk to your doctor, write down your questions, read this forum and ask any questions you need. Be proactive in treating your disease, stay on top of it, educate yourself.
Posted 12/3/2007 3:51 PM (GMT 0)
http://hopkins-gi.nts.jhu.edu/pages/latin/templates/index.cfm?pg=disease1&organ=6&disease=21&lang_id=1

This is a very comprehensive site for everything you need to know about CD.
Posted 12/3/2007 4:27 PM (GMT 0)
Thanks Judy

I perused your site, but felt it answered questions I have already found answers to, such as:
What is CD, What causes CD, Treating CD, etc.

What I can't seem to understand is a timeline on the diseases progression... Does the disease progress? I'm beginning to think there is no timeline because each case is different. /shrug

I am on Asacol, my primary symptom has been bloody stool, and an infrequent sharp abdominal pain. I believe that I have been undiagnosed for 3-5 years. Is this only mild/moderate CD? I do not understand this

JudyK89 said...
Also understand that a lot of the people on here are here because they've have severe disease and are looking for support and answeres

It made me feel a little like I don't belong posting here because I do not have severe disease. Pardon me if I'm being over-sensitive.

I have 2 children. 2 and 1/2 years and 6 months. When should I have them checked on to see if they "inherited" this?

edit: And I guess I cannot give this to my wife? Or anyone else?
Posted 12/3/2007 4:41 PM (GMT 0)
Luglug, Don't feel like you don't belong. Judy should have added not only severe disease but also people who are new to it and are looking for information and support. I know she didn't mean it to come out that way.

Every ones course of disease is individual. I'm 48 years old and diagnosed last year. But my daughter is 27 and was diagnosed when she was 12. My disease is also considered mild only because I had half of my colon removed last year because of a fistula to my bladder. Lucky me. That is when they found the disease. Only a small percentage of Crohnies even get fistulas but they are possible.

It is possible to have related genes to predispose someone to IBD but it is not a given. So I wouldn't worry about you children but do keep a close eye on them.

There are many new drugs that you can take if you should need to and there is always the surgery option if necessary. I'm only on pentasa, which is a sister drug of asacol. Just keep up on it and maybe you can have many many years of symptom free disease activity.

There is another website called www.IBDsucks.com that is trully terrific. Lots of information about everything and friendships that have formed with other sufferers. So if anyone wants to check it out......do so.
Posted 12/3/2007 6:07 PM (GMT 0)
Probably the most important thing to know about Crohn's is that there is no true "typical" patient. Every case is unique. Some people respond better to one medication, some to others, some to different medications at different times. There is a subset fo Crohn'a patients -- maybe 20% -- who have stable, relatively mild disease over time. Others have rapidly cascading complications

that require heavy duty meds and/or surgery. No, it will not kill you . . . a good way to think of it is like arthritis, which is also an inflammatory disease that damages certain organ systems over time. With some people it can be disabling, but with most it is a lifestyle nuisance. No, you cannot transmit Crohn's to anyoje else -- it's not contagious. Yes there may be a genetic factor, but it is probably a weak one, meaning that it is less likely that kids will inherit the tendency than that they will. The bottom line is that you now have confirmation that you have a chronic, incurable condition that can be addressed by a wide range fo steps, from medications to some liftestly changes (like diet.) Most people with Crohn's live basically normal lives, makig what accommodations they need to from time to time to their disease. It's not the end of the world at all.

Posted 12/3/2007 6:07 PM (GMT 0)
I just got diagnosed with Crohn's in August. I really liked this book "The First Year: Crohn's Disease and Ulcerative Colitis: An Essential Guide for the Newly Diagnosed"by Jill Sklar, but I'm sure there are other good books, too. I just felt like this was an easy read and it explained all of the procedures I would soon encounter. This discussion board has been really helpful too, especially when I've had symptoms that have scared me. I don't want to speak on Judy's behalf, but it seemed like she was trying to explain that you may see more severe cases on the discussion board due to the help-seeking nature of the board, so don't get scared by that. I have multiple friends who have Crohn's who haven't had any symptoms for years, therefore my firends don't use discussion boards ever. My sense is that with the new meds, you can go years being in remission...I'm not there yet, but I hope to be soon. If I were you, I would buy a book on crohn's and use the discussion board. It really helped for me. All of us know how upsetting it is being initially diagnosed. I was diagnosed a week after I defended my dissertation and I was sure that I just had a stomach flu or some bad effects of the stress I was dealing with finishing school, but then my doctor told me it was Crohn's. I'm still dealing with the fact that I have a chronic disease, but it seems like many people wind up feeling normal once the inflammation is controlled, so I keep reminding myself of that. You'll get through this.
Posted 12/3/2007 6:14 PM (GMT 0)
Just want to say that there are others who know how you feel. You're going to go through those five stages.... and it's not fun. But when you come through the acceptance phase, it gets better. Just make sure you get to a good doctor who really understands CD, go to your appointments, and that's all you can do. Your prognosis is likely quite good.

Either way, anger (check), fear (check), frustration (check)... most if not all of us on this board know how you feel and we're with you...
Posted 12/3/2007 7:02 PM (GMT 0)
Thanks all for your replies.
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