What Helped Me During My Dark Days with Crohn’s Disease

My last post was about how everyone in the IBD community, as well as their IBD, is different–and thereby how different methods of awareness and remediation are needed.  I’ve continued to think about this topic more and more since the end of IBD Awareness Week.  While looking back on my journey with IBD, I began to reflect on what allowed me to take back my life from Crohn’s disease in so many ways and brought me back from a really dark place when I needed it.

First a little background on what I was going through before my ostomy surgery.  The two years before my ostomy surgery were horrible–which is probably an understatement.  At the end of 2008, my Crohn’s disease began to not just come back, but come back with vengeance.  During this year, I was going to the bathroom around twenty times a day, had accidents regularly, was in constant pain and had NO quality of life.  Even when I tried to enjoy a day, my quality of life was still low, mainly due to the fear I had the entire time.  At this point I was told that a second resection would help me greatly and get me as close as possible to a normal life again.  In November 2009, I had more of my colon removed with the surgery and one of the most important things that was given to me before this surgery was HOPE.

After the surgery I was excited to get back to living again.  It was going to be a 6-8 week recovery and then letting my body adjust with less colon for a few months.  I tried to be patient, but nothing was changing.  The pain was still there, the frequency was still there, the accidents were still happening and all the other symptoms of Crohn’s were still plaguing my body and mind.  The surgery didn’t work.  I wanted to cry and I did.  I knew what the next step was going to be and an ostomy was in my future.  At the time I thought of it as the end of the world.  Life can’t be normal with an ostomy, right?

When I was 21 years old.
When I was 21 years old.

I was in a dark place.  How much could I enjoy my life, when I was going to be a single 28 year old male, with a BAG?  I researched everything I could.  All my friends told me that it was going to be all right, but none of them had ostomies.  Only a few people I was connected with had ostomies.  They told me it would be okay, but none of them were like me…an active young male.  What was going to happen to climbing, hiking, skiing, kayaking and all the other activities I loved?  What was it going to be like to have a relationship?

My ostomy surgery was just a week away now.  I was scared and even though I knew I had to get my ostomy, I didn’t know what it would actually be like.  This is a life changing surgery and nothing can truly prepare you for it.  Now that I was so close to the surgery I was not sleeping at all.  I spent my nights trying to find someone I could connect with.  Someone that was like me and would show me that things would be okay.  I Googled “Climbing with an ostomy” and found exactly what I needed before my surgery.

A gentleman by the name of Rob Hill allowed me to change my attitude.   I was about to go into the biggest surgery of my life with a negative attitude–a bad mindset to have considering what was about to happen.  You should always try your best to go into a surgery with a positive mindset and now I had one.  I had finally found someone who I could connect with.  Rob Hill has climbed the Seven Summits, the tallest peaks on each continent.  I began to watch all of his videos from 2-5am, most of them multiple times.  It was inspiring to find someone living the life I wanted with an ostomy.  All of a sudden the word HOPE was restored in my vocabulary.

Below is one of the videos which helped me tremendously.

I was no longer going into my ostomy surgery thinking that my life was over.  I was now thinking that I was going into my ostomy surgery and my life was just beginning.  The next three days before my surgery were less stressful and more enjoyable.  I even slept the night before my ostomy surgery, really well too.  When I awoke from my surgery, I knew things were going to be okay.  It would take a little time, but after I adjusted and learned how my new body would work, I’d have a quality of life again.  I was not only ready to fight back against my Crohn’s again, I was ready to take my life back from this disease.

We are all different and our IBD is different too.  This is why I want to be able to help as many people as possible with the IIF.  Finding different stories which patients of different types might be able to connect with for our Never Stay Quiet video series is something I believe can truly help others.  Our goal is to have a video that each IBD patient can watch and see a bit of themselves in.  For me it was Rob Hill and showing me an active life was going to be possible with my Crohn’s and ostomy.  For others it might be a completely different story and person which might change their life with IBD.  We have four different stories currently and are working on more.

We need to make sure that every IBD patient knows that they are not inventing the wheel with their disease.  None of us are alone and we all have other IBD patients out there that we can connect with.  We just have to make sure that we Never Stay Quiet and know others in the  IBD community are here to help.

Never Stay Quiet!



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