What can we do?

One of the sad things about being a part of so many Crohns, Colitis and IBD support groups is you see posts about people dying from the disease. Sadly, this is not something a lot of people hear about or know about. Complications from Crohns and related diseases can be fatal - and it's more common than you think.

Today I saw a post about a young woman (no age given but she appears to be in her late 20's) who passed away from complications of Crohns today. I've been seeing a lot of this lately and it makes me sad for a lot of reasons - aside from the obvious. I am sad that most people do not know how serious this disease is. A lot of people think it's like IBS (Irritable Bowel Syndrome) and it isn't. It is so much worse. There is still so much to learn about Crohns and I am still hopeful there will be a cure at some point.

I have done some research in various places and it appears as though the survival rate, after having severe Crohns/Colitis for over 12 years is only 77%. Why is this a statistic not widely known? Why are we only now just starting to really talk about this disease? Why do people still refer to it as a minor disease that only causes "cramps and lots of pooping"

I can't even begin to list the issues I have had solely based on this disease but I'll give it a go:

• Abdominal pain ranging from minor to so severe I can not stand up straight. Most of this pain has been with me every day for nearly 30 years
• Diarrhea - again ranging from mild to severe
• constipation
• weight gains/losses
• fevers
• nausea/vomiting
• canker sores so bad they've been on my gums, tongue and down my throat - so bad I can't even drink water
• easy to bruise
• joint pain - every joint in my body can be affected
• blockages or narrowing of my intestines causing extreme pain
• fistulas
• abscesses
• rectal bleeding
• numerous hospital stays
• TPN nutrition (no eating only getting "food" through a tube inserted via IV)
• surgeries (the latest resulting in no colon)
• I now have a stoma and wear an ostomy bag
• headaches
• vision problems
• memory problems
• nutrition issues

At my worst this past year I could have been yet another post in a support group - and I know from how much the doctors were concerned that I wasn't too far off from being another sad statistic of this disease. My bloodwork was coming back so bad that it was scary. My iron levels were so low the count wouldn't even show up in the tests. At that point I honestly didn't know how bad I was (I have been told by my doctors since I've been better that they were honestly concerned about my prognosis) and I didn't really think that anything like that could happen to me. I didn't know it could and I've lived with this disease for almost 30 years. In retrospect, I am glad I got the surgery I did - it quite literally saved my life.

I wish more was known about this disease in the general population. As I have watched the Ice Bucket Challenge make it way across social media (and I even participated when I was nominated) I have wondered what kind of viral stunt could be done to promote awareness of Crohns and Colitis? What could we, as a community of people with this disease, do to start a movement and raise money for research?

There has to be something we can do - help me think of something and let's start our own social media movement. Let's make a stand and raise money for an illness that isn't just uncomfortable, it's literally taking lives.