There are approximately 5 million people worldwide who suffer from Crohn’s Disease and Ulcerative Colitis. Every day one of those people is being hospitalized for countless reasons. It could be an infection, severe anemia, Toxic Megacolon, strictures, blockages, or even dehydration. Many of my friends are suffering right now. Doctors are scratching their heads and throwing expensive medications at them hoping something out there will put them in remission. Inflammatory Bowel Disease is serious stuff.
1.6 million of those 5 million IBD sufferers live in America, and unfortunately, the prevalence of the disease is on the rise. Chances are you know or are related to someone who suffers from Crohn’s or UC. You may not even know it! These diseases are, more often than not, private. Not spoken of. I never knew what Ulcerative Colitis was until I was diagnosed.
If you are related to someone with IBD, you have a higher chance of developing IBD. I have Ulcerative Colitis. My Mom has Crohn’s Disease. So does my aunt, her sister. I’m scared to death that one of my other siblings are going to be diagnosed any day now. If there was a cure, I wouldn’t have to worry about it so much.
The more people that know about IBD and how it affects sufferers and caregivers, the better our support system would be. I think that it would have been very helpful in the beginning if I had known a bit more about my disease and where to find support. Although most of my friends and family members (husband included) have always been supportive and understanding, I still had trouble getting the support I felt I needed. Last year, right before my first surgery, I finally found Twitter and everything changed. No one should suffer in silence.
Ulcerative Colitis and Crohn’s Disease are also difficult diseases to treat. Far too often, when a patient is diagnosed with IBD, gastroenterologists get extremely frustrated. They know that it will be a hard and difficult road. Sadly, many of them do not specialize in the diseases and this creates an even bigger disconnect between doctor and patient.
At least it’s not cancer! Many people who suffer from Crohn’s and UC have heard this phrase uttered at least once. And ok, it’s not cancer. Given the choice between IBD and cancer, I’d take IBD. Most of the time, IBD is not life threatening. Yes, we should all try to look at the positives in life. Always. But we have our moments and slip-ups where we fall into pits of feeling sorry for ourselves. We will all have “bad days” and days where it feels like the pain is unending. The truth is, everyone struggles. We should never compare or downplay another person’s suffering to our own. That math test your friend is stressing out over may be the most stressful and scariest thing they’ve had to face in life thus far! Think back to a time when all you had to worry about was whether or not the people in your class would accept or reject you. It was pretty hard!
Bottom line is, life sucks sometimes. It’s true, things could always be worse… but that doesn’t make chronic illness any easier to cope with. There are times where it’s all you can do to not go crazy sitting on the floor hugging the toilet as you empty your stomach of all its contents.
No, IBD is not cancer, but did you know that sometimes chemotherapy type drugs and drugs used during chemotherapy, are used to treat IBD? There are many IBD patients who are prescribed Methotrexate, Mercaptopurine, and Prednisone… which means that someone with Crohn’s or UC can also experience the side-effects of such drugs. Hairloss, moonface, blood clots, infection risks, liver damage and kidney problems… not only that, but people suffering from IBD have a higher risk of developing colon cancer! That’s pretty scary!
We need doctors who are more educated on Inflammatory Bowel Disease so that we can get better treatments. Crohn’s Disease and Ulcerative Colitis are not just about the bathroom. They are multi-dimensional and complex. Abscesses, fungal infections, anal fissures, blood loss, vitamin deficiencies, dehydration; all of these can be very serious risks. We need more than just treatments that mask the problems. We need cures.
QUESTION for all #Crohns & #UlcerativeColitis sufferers: Why should we care about raising awareness? #IBD
— Colitis Ninja (@ColitisNinja) May 13, 2015
@ColitisNinja because awareness leads to cures. No one is going to try to cure something if they don’t know it exists.
— Sarah (@sarizabeth) May 13, 2015
@ColitisNinja Because people may be suffering, undiagnosed, thinking they just have a weak stomach. No reason to suffer in silence.
— Ian Rothman (@ianrothman) May 13, 2015
@ColitisNinja we do it because who could do it better than us. We need to disrupt. And do things to ignite change. pic.twitter.com/NmsYMJAKTy
— Ostom-i (@Ostom_i) May 14, 2015
