Crohn’s Awareness Day

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May 19th is Crohn’s Awareness Day. A good friend of mine has Crohn’s, and I am posting this in honor of her. She wrote the following, entitled “I bet you didn’t know…”

In an effort to raise awareness, here are some tidbits about Crohn’s disease.

  • The crohn’s awareness ribbon is purple
  • “The inflammation caused by Crohn’s disease often spreads deep into the layers of affected bowel tissue. Like ulcerative colitis, another common IBD, Crohn’s disease can be both painful and debilitating and sometimes may lead to life-threatening complications.” –The Mayo Clinic
  • Most people are diagnosed with Crohn’s between the ages of 20 and 30.
  • Crohn’s is not limited to diarrhea. It can include vomiting and debilitating constipation as well.
  • There is a link between crohn’s and infertility. Doctors do not know what it is but they see a correlation. (Note from Ashley: This is something my friend and her husband are struggling with right now.)
  • Good days and bad days- some days I feel very crummy and other days I am perfectly fine. Sometimes this can happen within the same day.
  • “Well, you look good.” I may look happy and healthy but I may be really sick. Crohn’s is not visible on the outside.
  • Crohn’s is a chronic illness meaning it’s life long.
  • Lots of medications are required- on average 10-12 pills a day
  • Crohn’s patients receive chemotherapy
  • Regular trips to the doctor are required
  • Most crohn’s patients (3 out of every 4) will have serious surgeries during their lifetime.
  • Crohn’s is considered a disability recognized by the ADA.
  • When you hear about the flu or other bugs affecting the “at-risk” community (the elderly, young children and sick), it includes crohn’s patients.
  • There isn’t a cure yet but medical research has come a long way. It’s suspected that a cure for crohn’s would also be a cure for cancer.
  • Crohn’s patients are more likely to develop cancer than the general public.
  • 3 levels: mild, moderate and severe. Mine is considered moderate to severe.
  • Famous people with crohn’s – Dwight Eisenhower, J.F. Kennedy, Marvin Bush (President George W.’s brother, George H’s son), Anastasia the singer, and others.
  • Crohn’s is an autoimmune disease meaning my own immune system is confused and beating me up.
  • Crohn’s is extremely painful. A full flare is said to be equal to labor pains. When I was first admitted into the hospital I described my pain as being “the worst imaginable gas pains combined with horrible menstrual cramps.” When the doctors figured out what it was they told me that my intestinal blockage produced as much pain as natural childbirth. They also said that I must have an extremely high pain tolerance considering that I just laid in the ER waiting room for hours without making much noise. Here I thought I was being a wimp!
  • Many with crohn’s also have other auto-immune diseases. I have rheumatoid arthritis as well.
  • 0.5% of people have crohn’s disease or ulcerative colitis. While clearly a minority, that is still 1.4 million Americans.
  • Treatment for crohn’s is more expensive than treatment for cancer.
  • When the intestines don’t absorb properly, vitamin deficiencies and anemia result.
  • Patients with crohn’s disease are often ineligible for life insurance.
  • Crohn’s disease is named after Dr. Burrill Bernard Crohn who grouped a series of symptoms and named the disease.
  • Crohn’s is often difficult to talk about and is considered “taboo” in our society. People with crohn’s disease cannot control their bowels and will pass gas unintentionally or have “accidents” if you know what I mean. So think twice before you judge.
  • Medical treatments have come a long way in the past 5 years. The use of immunosuppressant drugs have helped me and other patients tremendously.

Also, here is a video that talks about a walk that raises money for a cure for Crohn’s and Colitis.

3 thoughts on “Crohn’s Awareness Day

  1. I have a friend with Crohn’s as well (and another with colitis, which is similar). Having my own digestive issues the past few years has really helped me to understand just a small bit of what someone with a more major disorder goes through. I’ve also been learning a lot more about Crohn’s and stuff in conjunction with the restricted diet I’m on, as the GAPS diet (and the SCD) has been used as a treatment for Crohn’s quite successfully for many. Kudos to those who live through it!

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