Crohns Message Boards: How They Can Help People Who Have Recently Been Diagnosed With Crohn‘s Disease.
Let's say that you’ve never heard of the disease before, and you don’t know anyone with the condition. Your doctor has given you some information, but you want more. How do you get it? You go to the internet, of course. And you discover Crohns message boards (forums) with a lot of other people who have the same condition.
These people are talking about their situation, the medications they take, and so much more. Here’s the big question: What does that really do for you?
For one thing it can help you have more realistic expectations. After all, you don’t have any experience with the Crohn's disease and you had never even heard of it until your doctor told you that you have it. Usually for newly diagnosed patients, the natural inclination is the common hope that the drug(s) they have started taking will work wonders. Well, they might; but they also might not. Different people react differently to the same medications. You learn all of this quickly by reading from the Crohns message boards.
As you read and participate, you learn you are going to have to develop patience as you and your doctor work to find the right drug(s) and the right dosage to help you get some relief from the symptoms you are experiencing. Thanks to the boards, you now realize that finding the right medicines in the right dosage is a process. The reality is that it can take some time to figure out what treatment will work best for you.
You also learn from the Crohns message boards that what works for one person doesn‘t necessarily work for someone else. It’s not the best of news, but that, too, is the reality of the situation.
In fact, one person can experience certain side effects from the same medication you’re taking while you experience no side effects. And vice versa. You also learn from the boards that it can seem at times that the side effects of a medication can be worse than the disease itself. You’re not going to know this however until you start taking the medications. It may be disappointing, but at least your not caught unaware.
Also, if you’re new to the disease, how do you know how to interpret what is going on? You’re going to communicate with your doctor of course. That is most important. But the right frame of reference can also come from communication with others participants on Crohns message boards.
You might learn for instance, that people with Crohn’s Disease have to change their medications from time to time. Maybe a drug is just not working the way everyone had hoped. Or maybe it did work and it’s just time to come off of it. You might not have understood how often this happens until you read about it from other people who have taken the same medications you now take.
Another important lesson from the Crohns message boards is that you are not alone. It’s so easy to feel you’re the only one with this condition. The fact is over 500,000 people are in the same situation you are. Now that you’re on the forums, you know that first hand. You experience it. It’s not just a statistic. And you’ll actually make friends with some of the participates.
Finally, it is important to note that there will probably be more posts by people with severe cases than those in remission. A person that is hurting needs to vent. I think it is important to be able to vent in a community of people who understand what you are going through. But you cannot take a very negative situation for someone else and worry that’s that you’re going to experience the same thing. You don’t know that. For instance, I’ve been in remission for years.
By reading from and participating in message boards you can discover questions to ask your doctor that you might not have thought about otherwise. Remember -- You have to go by what the doctor says and not what you read on the boards. The boards can help you decide on some of the questions you want to ask your doctor, but you can never forget that it is the doctor who is treating you.
Do you want to read more about support groups? Perhaps have some links to different message boards? If so, click here.
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