Raise awareness and money for Crohn's disease and Colitis

I am 28 years old, and I was just told that I have Crohn’s Disease and Colitis. I have been trying to understand it. As of right now I just had my first treatment of Remicade and so far it has helped. I am also on Asacol I have to take it every single day. This medication is very expensive :( The Remicade infusions are also very expensive :( Supposedly this disease somehow runs in my family, but I do not know anyone with this. It was believed that my grandfather had it, however family members are still unsure. I just wonder, how does this happen…I am a young female who eats healthy. I think I have had this disease a lot longer, just because I have always had problems with my stomach, and never really knew why….anyway have any info on this I would love to hear. I want to raise an awareness for this disease…how come it is not talked about…why do I never hear about it until now?

My friend Judy died last week from complications of Crohn’s disease. I met Judy back in the Fall of 2001. I was at my worst and decided to join a support group sponsored by the Crohn’s and Colitis Foundation of America. judy was the support group leader.

Judy was a huge support to me and my husband. At our meetings, she even helped with our marriage, helped my husband to understand, be empathetic and have patience to handle what I was going through. In returned, I learned it wasn’t just me who had to handle this disease.

Judy never liked to talk about herself. She always listened to everyone elses story’s. Judy had multiple surgeries including a colostomy and reversal of it. She had been sick for years and never liked to ever showed she was feeling pain. But over the years, I guess we became closer and we would hear more and more about what she has gone through in her battle.

Judy lost her battle last Tuesday when she died in her sleep. I guess her body just gave up. She was 53 years young. She left behind a son 28, and her husband.

Thank you for listening.

A consortium of researchers from the United States, Canada, and Europe has identified 21 new genes for Crohn’s disease, a chronic disease of the large and small intestines. This discovery, funded in part by the National Institutes of Health (NIH), brings the total number of known genes associated with Crohn’s disease to more than 30 and advances understanding of causes and potential avenues to develop new treatments. Read the report and read more on recent research advancements from CCFA Chief Medical Advisor in the Boston Globe.

I have to drink 64 oz. of Gatorade mixed with a non tasting substance called Miralax. I drank 32 oz. and threw up most of it. That’s not very good.

I have taken 2 laxatives which were probably no good too and came up with the Gatorade. This is awful so far.

Now I have to try to down the other 32oz of Gatorade mixed with Miralax. It’s hard enough I do not even like Gatorade.

Then I have to take 4 more laxatives and something called phosphosoda mixed with 3 glasses of a clear liquid. All of tis before 10:00PM tonight.

Arrrgh! No wonde rI have been putting this off for so long.

my friend was diagnosed and is often uncomfortable and in pain – hopefully her treatments will make it better!!!

Newsday.com
Researchers to test stem cells to treat Crohn’s

BY DELTHIA RICKS

Newsday Staff Writer

11:50 PM EDT, June 17, 2008

Stem cells may force Crohn’s disease into retreat, say Long Island medical investigators who are embarking on a pioneering analysis that targets patients who’ve failed other therapies.

Read more…

My mom is the most wonderful human being in the world! I know everyone probably says this about their mothers but I truly know for a fact my mom is. She has had Crohns disease for over 18 years and I know there is other people out there suffering from this dreadful disease. It seems like not many people are aware of this and how many people have Crohns. I would like to raise awareness and raise money so one day there can be a cure for Crohns disease and everyone out there suffereing can live a normal, healthy life!

in remission for 5 years now. Today I have gone to the bathroom numerous times. Everything looks fine, but it still seems scary that something, after all this time could be wrong. It’s not fun having it weighing over my head.

Having Crohn’s Disease has certainly tested the patience of my husband many times. Let’s take our trip to New Orlean’s back in 2001. Mostly I was fine. But being in a strange city sure can put stress on. One time I made my husband get off the trolly because I “thought” I needed a bathroom. Another time we had breakfast at McDonald’s instead of a real restaurant because I was too nervous to walk the extra blocks that day. In addition, I made myself sit on the toilet so I a had flare up of my hemroids. It was awful.

My family and I are about to embark on our first family trip to Walt Disney World in Florida. My husband and I went back in 2002 together. Again, I was at the end of mild flare up and my hemroids were killing me the first days. SO much so I could not sit down at dinner time. I was afraid to go on the Safari adventure in Animal Kingdom the next day but I managed to survive it. Waiting on lines for the rides were awful. i was afraid of having to going to the bathroom once I got to the ride.

This trip, I am happy to say, I feel great! Everything seems to be in check and I can’t wait to get on that plain on Saturday. Wish me luck, bit I know I won’t need it.

I have stopped taking the drug 6mp since November. My doctor says I would not need blood work as often which is good. Mine came out fine by the way. However, I would still be due for that colonoscopy by June. Baby steps! Baby steps!