Caring for Crohn's & UC

Guest Post: The Silent Battle Before an Ostomy

April 17, 2013 at 10:50 am Rebecca K. 1 comment

Today’s post comes from Brian Greenberg, the man behind the Intense Intestine’s Foundation. Brian has battled Crohn’s disease for years and, two-and-a-half years ago, became an ostomate. Despite having an ileostomy, Brian refuses to let his disease get in the way of his love for the outdoors and life. Below he talks about the internal struggle many patients go through prior to getting an ostomy.

Many people with Crohn’s disease or ulcerative colitis have long, hard battles before deciding to even think about getting an ostomy.  Years and years go by trying to find the right combination of medications, have a resection that works, or figuring some other way to beat their disease.  Sometimes the disease is just so aggressive that an ostomy is hard to avoid.  We try to do everything we can to not have to venture down the ostomy road, but it can’t always be avoided.

I would know- I’ve had an ileostomy for two-and-a-half years. Prior to the ostomy procedure, I had around 30 surgeries total- two major bowel resections along with countless abscess drainage and perianal fistula procedures. I knew for about three years beforehand that I was going to need to have an ostomy but I did everything in my power to avoid it.

Part of that is because of the battle IBD patients go through on a daily basis. The society we live in teaches us not to talk about going to the bathroom and tricks us into over-thinking and creating fears that we shouldn’t have.

I went through a lot of different emotions before I actually had my ostomy surgery. Below I explore the different stages (similar to the stages of grief) that are common prior to ostomy surgery:

Denial About What’s Ahead

“This can’t be happening to me.”

The first stage that many IBD patients go through is denial- we purposely stay ignorant the fact that we are going to be getting an ostomy.  Denial about getting an ostomy can be conscious or unconscious- refusing to accept facts, information, or reality about the procedure. Even though we know what it is and “getting a bag” involves, we don’t educate ourselves on all the details.  By doing this, we deny ourselves the opportunity to learn about an option which can improve our quality of life.

Anger and Fear

“This isn’t fair!”

“Why me?”

A common next phase is anger. Many IBD patients become angry about having to have an ostomy. We don’t think about how much it will help us- how it will allow us to not have to run to the bathroom 25 times a day; how it will allow us to leave the house without fear again; and how it won’t keep us from doing many things at all.  In our minds we think about things like how it will smell, will people see it, and more, all of which aren’t even issues.

Fear can be felt in this stage about how it will affect our life in every way.  Patients can begin to create situations in their heads and only think about the worst-case scenario.

Instead patients need to focus on how it will improve their lives, talk to others to see that many issues aren’t issues at all and find out the truth about what is going on.

In reality, I can tell you that most if not all ostomy patients I’ve met all say the same thing:

“I should have had gotten an ostomy years ago.” 

Hard Times Before the Surgery

Similar to anger, many patients become depressed about having to have an ostomy and live with a “bag” for the rest of their life.  It’s not an easy decision but once it’s made the reality of everything sets in.  Questions now emerge about what it will truly be like.

During this stage, we start to dwell on all the possible negatives associated with Ostomies and don’t realize how positive an experience it will be.  We begin to think about how it might affect dating and relationships, how it might keep us from doing certain activities, or how it would not allow us to even leave the house.

Once again the reality, is different from the situations that we are able to create in our heads.  Since my ostomy surgery I’ve had no problem in dating/relationships, able to do most if not all of my normal activities and more.  The ostomy has given me my life back.

Want more proof? Check out this video I made during a day skiing at Okemo Mountain Resort in Vermont.

Acceptance

As it gets closer to the surgery date, we finally begin to learn about what an ostomy actually is. We educate ourselves on what a stoma is, what life will be like with an ostomy, and how it might affect our everyday lives.

Ultimately, we begin to accept the fact that yes, we are going to have an ostomy bag, but that sure beats living every day in excruciating pain, afraid of being far from a bathroom, and not living life to its fullest.

The Bottom Line

My recommendation to anyone thinking about getting an ostomy is to ignore the natural thoughts that come along with “the bag.”  An ostomy will significantly improve your life.

Brian completing the Napa to Sonoma Half-Marathon

I can tell you that in the two-and-a-half years that I’ve had my ostomy I’ve dated multiple beautiful women, climbed mountains all over the Northeast, ran a half marathon, had an incredible social life and much more.  You will be able to do almost anything a normal person can do and any decent person won’t care that you have one.

For more information about the Intense Intestine’s Foundation and Brian, you can visit the Foundation’s website, blog, Facebook page and Twitter account.

Entry filed under: Advocates, General Disease, Treatment. Tags: Colitis, Colostomy, crohn's, crohn's disease, GI, GI Tract, ibd, ileostomy, inflammatory bowel disease, intestines, ostomy, Surgery, uc, ulcerative colitis.