Make Them Aware

December 1-7, 2017 is IBD Awareness Week.  This is a great time for those who have Inflammatory Bowel Disease or those who may know someone who has it or those who work in gastroenterology to bring awareness to the forefront of people's lives.  It's a time to share information on the disease and how it affects different areas of the body in various ways.  And it's a time to share experiences of dealing with what can be a vicious illness that takes over the ability to live in comfort.

IBD (specifically Crohn's Disease in my case) isn't something you can take an antibiotic for 10 days (or however long), and the affliction goes away.  It isn't a scrape on the knee where you just clean up the injured area, put some ointment on it and a bandage, and the scrape heals.  IBD is...well...forever.

With IBD, medical tests are commonplace.  Fortunately, for me, I can now go two years between ileoscopies as I've had good results from my previous scopes over the past few years.  Every year (at least), I see my gastroenterologist.  But there was a time when my Crohn's was active that my visits with him were much more frequent.  Medications (that aren't always budget friendly) have to be taken regularly.  But there is no guarantee that they will help the individual that is taking them (for me, they did not).

Some people face multiple surgeries due to the impact their illness has had on them, such as removal of parts of their intestines or even removal of their colon completely like with me.  And though its been a blessing to my health, I have to admit that sometimes I wish I didn't have to wear an ostomy bag.  When things are quiet around me, that's when my stoma wants to be the noisiest.  It's not very lady-like.  I attempt to muffle the noises by putting my hand over my ostomy bag, but it's still noticeable, to me anyway.

There are costs involved with IBD as well.  Monetary costs are big due to expensive drugs and sometimes extended (or just frequent) hospital visits.  And of course, doctor's office visits.  With an ostomy, supplies can be quite pricey.

There's a time cost.  People with active disease are likely to miss time at work due to those hospital visits, doctor's appointments, and just feeling unable to work.  They miss time with friends and family when they don't feel well.  Being a part of society gets pushed aside as one just tries to get through the daily pain.

Family and friends pay a price, too.  They may miss out on the same things as the family member that is struggling with their illness: time at work, spending time with other family and friends, and just having time for themselves.  They are doing their best to support the loved one who is sick; but their free time may be turned into a time of care-giving.

And lets not forget the emotional toil IBD can have on a person.  The uncertainty of if and when one is going to get better (or the if and when is the next relapse going to happen) can really take a person on a roller coaster ride. They are on top of the world when the disease has calmed down and one is able to go out of the house pain free; but then the ride goes way too fast in a downward spiral when a relapse occurs and the painful symptoms reappear.

As this week of awareness goes forward, my hope is that the awareness of IBD doesn't end on December 7th, but that it will carry on each and every day.  People can't be a part of something they know nothing about.  Bringing awareness of IBD is part of why I started writing this blog.  I'm hoping that it's doing just that.  Please continue to share my story with those that may be affected by IBD.  We all need the support of others.