Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
Over the past several years I've shown symptoms of Crohn's, but never got diagnosed because of the expense. My father has had it for about 20 years and he receives no treatment because of how expensive medication is. My younger sister also has it and was diagnosed at the age of 8! She has been on medication ever since and it has helped her greatly, but it does take it's toll on my parents' income. We ignored my "issues" for a while because it wasn't very severe.
Recently my "tummy troubles" have become more severe and are interfering in my daily life. I saw my family doctor last week who has also seen my dad and my sister. He doesn't want to fool around with this, he wants to get this figured out quickly to start me on medication since we are pretty sure of what is going on with me due to the family history and cluster of symptoms. I am supposed to hear back about my preliminary blood tests today at some time, but the waiting is hard to do.
I'm not going to lie, I'm a little scared. My aunt also has this disease and she almost died a month ago during surgery on her intestines. My grandmother died of colon cancer. My father can't afford treatment, so I'm afraid he's going to have severe complications in the future. I'm also scared for myself. I would love to have someone I can talk to about this because this is one of those diseases that you don't want to talk about to just anyone. My roommates don't understand the full scope of it. They just say it's gross, but I can't help it! Any support I can receive from this group would be great right now!!!
Recently my "tummy troubles" have become more severe and are interfering in my daily life. I saw my family doctor last week who has also seen my dad and my sister. He doesn't want to fool around with this, he wants to get this figured out quickly to start me on medication since we are pretty sure of what is going on with me due to the family history and cluster of symptoms. I am supposed to hear back about my preliminary blood tests today at some time, but the waiting is hard to do.
I'm not going to lie, I'm a little scared. My aunt also has this disease and she almost died a month ago during surgery on her intestines. My grandmother died of colon cancer. My father can't afford treatment, so I'm afraid he's going to have severe complications in the future. I'm also scared for myself. I would love to have someone I can talk to about this because this is one of those diseases that you don't want to talk about to just anyone. My roommates don't understand the full scope of it. They just say it's gross, but I can't help it! Any support I can receive from this group would be great right now!!!
The financial portion of things is difficult too. It's so unbelievable that there are things out there that will help so many people, yet the price tag is so high. Seems to me that a lot of people are more interested in profit, than in human life. So sad.
It is an embarrassing disease to have. It's hard to deal with. It's frustrating, because you just don't know what's going to happen, or when.
My best advice would be to stay as positive as you can. There's a lot to be said about the power of positive thinking. These diseases are manageable. I also know that there are ways that you can go about getting the medications if you can't afford them. Sometimes if you contact the drug company directly, they can help you with the expense. It's a lot of extra work, but worth it to save your life as you know it.
There are also clinical trials out there that you might qualify for. I know that this is sometimes a way to get treatment at a reduced rate or free, especially if you are recently diagnosed, and have not taken any other meds at the time.
Let me know if you need anything or have any more questions/concerns, or just need to talk. I'd be more than happy to listen!
God bless!
remember for every problem there is a solution. You are an intelligent person. You have been given some very good advice by fellow group members. Follow through on contacting the medical companies. Often times doctore themselves have sample medicines in their offices.
Keep us informed. YOU ARE NOT ALONE.
My doctor just called with news about my blood tests. Apparently everything came back normal. I should be happy that everything is normal, but I'm not because now I'm not any closer to figuring out what is wrong and getting treatment. I wanted them to find something so they would have a reason to look further into my issues and figure this out.
Right now I'm just hoping that my blood occult tests show something, because if they don't then I don't know where I'm supposed to go from here.