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IBD Cure

World IBD Day 2015

World IBD Day 2015

A while back I wrote a guest blog called 23andMe – Be a Part of the IBD Genetics Study for The Great Bowel Movement sharing my experiences with the 23andMe DNA test kit.  23andMe is doing a genetic study whose goal is to discover the building blocks that make up IBD so that we may better understand it, and in the end create better treatments and ultimately a cure.

A short time later 23andMe asked to use quotes from the article and images from my blog page. To which I responded with something like: “Go for it!”  Talk about following through.  So on this World IBD Day I was pleasantly surprised with this super cool Ta Da!  The image they created is beautiful.  And a pretty nifty thing for a kid from small town Silverton, Oregon.  I hope it helps boost Ostomate pride, IBD awareness and the ongoing efforts as an entire community to find effective treatments and ultimately cure.

So if you feel like it, go check out the 23andMe page, The Great Bowel Movements page and my article.  Perhaps you’d like to participate as well?

IBD Soldier, Survivor, Victor

Last years big flare.
This is what Crohn’s Disease looks like when it gets too big.

Frequently I see signs saying ‘IBD Survivor’.  I suppose this feels true for so many.  But lately it hasn’t for me.   I challenge you to think of it as only half the story.  Surviving means you lived through something, overcame it, and emerged on the other side a victor.  And while we have all gone through invasive probing, painful tests, hospital stays, surgery, more surgery and hand fulls of pills every day, we have not won victory over anything but our ability to tolerate pain in effort to be well.  We don’t get to claim outright victory until IBD is CURED.  Until that day, we are all Soldiers.  Every one of us.

The surgeries, scars, ostomies and brushes with death that we experience are only skirmishes in a lifelong battle.  That does not negate the importance of surviving each conflict with IBD.  They are real victories.  We battle to survive.  However, so many people, me included, get caught up in a place of ‘feeling better’ and lose track of the big fight.  It’s like standing in a room with a murderer and not doing anything about it because he is not murdering you that minute.  We are so happy to have ‘survived’ that we slow down our fighting and forget that our job is to be soldiers until IBD is gone forever.

 IBD is sometimes loud, blatant and actively assaulting you. Other times IBD is quiet, sneaky and attacking you in more subtle ways. The slow formation of fistulas, the eventual ineffectiveness of IBD medication, the malabsorption of nutrition that slowly steals vital nutrients from your body, weakening your bones and wasting you away. Even secondary diseases such as liver failure are all favorites of IBD. IBD does not care about you, your plans, or your well being. It has one goal and it doesn’t care how it wins. Whether dismantling you violently or taking you softly, It Will Not Stop.

Until we find a complete cure, Inflammatory Bowel Disease will continue.

IBD needs to be cured for us, so we can continue on with full lives, but also for our children.  I will have really won when my grandchildren have to Google IBD to know what it is.

I try to be just like my loud and zesty Great Aunt.  She had Polio when she was a small child.  Before the vaccine.  She lost the use of her arm and it hung from her body as a lifeless but very real reminder of a disease that was once uncontrolled and quite deadly.  My Great Aunt was elegant, intelligent and happy.  She never spoke about Polio but she was a strong supporter of the vaccine that prevents it.  For her age and her time I consider her extraordinary.  She was a soldier.  And with Polio, even though she was left with a physical reminder, she was a survivor and a victor.

One day, hopefully soon, IBD will be in the same category as Polio.  Entirely manageable or preventable.  Better yet, eradicated.  On that day I will proudly say I am a survivor and victor as well.

The first week of December is IBD Awareness week.  I encourage you to educate others about IBD and be active in your IBD community on line and in your everyday lives.  Through sharing and living with courage, compassion and joy towards one another we can spread the word, support science and find a cure.

Until then continue to soldier on.