Rectal Abscesses and Fistulas, The Un-talked About Part of IBD

IBD: it is a stomach disease, right?  WRONG!  So many people just know about how Crohn’s disease and ulcerative colitis affect the intestines, but it can affect so much more.  Ulcerative colitis not only affects the colon, but the rectum as well.  Crohn’s disease can affect the entire digestive system from mouth to rectum.

What so many people don’t know is how horrible rectal diseases can get.  It is extremely easy for that area to get infected and once an infection exists, it is very hard to control.  Once the infection has started, it can spread through the area causing fistulas and fissures all through the tissue in the area.

I’ve told people about this, but during the time when I had abscesses and fistulas, it was the most horrible time in my life.  My stomach wasn’t even bothering me that much, but my disease was completely controlling my life.  I was constantly sick, experiencing rectal pain and having surgeries to drain the abscesses almost every six weeks.  During this time of my life, I had thirteen surgeries in nineteen months.  It is easy to say that during this time I didn’t have a life.

One of the worst days of my life is something other people joke about.  You might remember the major blackout that crippled the Northeast on August 14th, 2003.  While other people were trying to figure out how to save their ice cream from melting, I was on my way to the hospital to get surgery.  That afternoon I visited my doctor and had a 104.5 fever.  He immediately called the hospital and scheduled an emergency surgery.  The infection was worse than ever and he was nervous about my temperature being so high, for so long.

Not only was I getting surgery that night, but my surgeon said that the infection was so horrible, he would have to put in setons again. (Not soft ones, the hard ones because he wanted to make sure that the infection didn’t come back right away.)  For those of you that don’t know what setons are, they can be either soft strings that are placed through a fistula to make sure that they don’t close up and the infection is able to drain.  Setons can also be hard, almost like cocktail straws, so if you can imagine a cocktail straw in an extremely sensitive area of your body…  This was some of the worst pain that I’ve ever experienced in my life.Setons

Still, the fistulas did not heal correctly and I continued to have multiple surgeries.  As I was facing my first resection, my doctor told me that removing the disease that I had in my colon at the time would help my fistulas.  It was time to take that step and get a portion of my colon taken out.  I was scared, but I couldn’t continue having a surgery every six weeks or so.  Is that anyway to live?

After nineteen months of fighting nonstop, I circled the calendar and picked a date for surgery.  It was going to be three days after my twenty-first birthday.  (When I should have been out celebrating my first legal drink at the bar, I was busy prepping for surgery instead

Still, I was happy that I put up a fight; if I didn’t, I wouldn’t have been sure about my choice.  Going into the surgery I knew all the possibilities of how I might wake up.  An ostomy was mentioned, but at this time wasn’t needed.  Just a few months after my surgery, my rectum did get better, but the damage was done.  Years later when my Crohn’s came back, I didn’t have enough muscle to control ever bowel movement.

After going through what I did for roughly two years, I look at things completely differently.  When you have everything in your life taken from you (I don’t mean material items) and have zero quality of life, it changes the way you see things.  Not being able to leave the house without fear, not being able to see the people you love, not being able to hang out with friends and not being able to do the things you’re passionate about changes life in a big way.

Now I look back on those two years, and I’m glad I went through them in a way.  Those years have molded me as a person and have allowed me to learn to handle almost anything.  At times I don’t even get upset, since I know things can be so much worse.  I’ve even had disagreements with people because I’m not more emotional over certain events.  I don’t get easy upset or bothered anymore.  My disease has allowed me to put things in perspective.  It could always be worse, right?

I might not have many ass muscles any more, but that doesn’t mean I have to act like an ass about something that isn’t the end of the world.  No matter what day it is, I’m thankful for having at least some level of health right now.  I just want to make the most of life, and am happy that I’m able to.

Team Challenge Half Marathon (Napa/San Francisco)
Team Challenge Half Marathon (Napa/San Francisco)

Never Stay Quiet!



3 thoughts on “Rectal Abscesses and Fistulas, The Un-talked About Part of IBD

  1. Good for you for moving forward and living a better life. This disease does make us stronger and look at suffering in a different way, a better side appears, more like empathy, when someone is suffering from other illnesses. I cannot imagine what you went through back then. “Fire in the hole” does hit home on a couple occasions, for me, I have figured out it was what I put in my body and it is getting mad at me. Luckily it only takes a day or so to calm down. I am fortunate no surgeries, but with our community we learn and grow and it may not be as fearful should the time come. Take care and keep doing it . You are an inspiration.

    1. Thank you Diana. I have been through a lot. Why I am beginning to share more of my story to hopefully help as many people I can. I started to the Intense Intestines Foundation in order to help others with IBD and ostomies and I want to do that everyday. So happy to hear that things are under control for you and you haven’t had any surgeries. Thanks for the kinds words again. It means so much to have the support of so many great people like you. ~Brian

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