How Losing My Colon Gave Me Back My Life

Post by Stephanie Hughes. Stephanie was diagnosed with Crohn’s Disease in 1999, when she was 13 years old. Earlier this year she made the decision to have surgery to remove her colon and be given a permanent ileostomy. She believes it may have been the best decision she ever made.

I have lived with Crohn’s Disease for more than half of my life. I was diagnosed at the age of 13 and dealt with months of pain, extreme weight loss (dropped from 75 to 50 lbs.), and a lot of trips to the bathroom. I spent a month in the hospital and another year recovering from the ordeal. I was blessed to have a more mild recurrence of the disease during high school where I dealt mainly with a number of flares rather than continuing symptoms.

My freshman year of college was when things changed. I ended up in the hospital again for a couple of weeks and ever since then I have dealt with fairly consistent symptoms. Over the next 7 years I was put on just about every medication you can name, all of which gave me a little relief, but no real change. Plus, the long-term effects of these medications are still unknown.

Dr. Plevy, my gastroenterologist, had been talking to me for a while about considering surgery to have my colon taken out and an ostomy put in its place. But in my normal stubborn fashion, my consistent answer was, “I will try anything other than surgery.” I spoke to a surgeon just to appease my doctor, but told him right then that I wasn’t interested in the surgery.

Then last October I started a horrible series of hospitalizations over the following months. It was usually due to an infection or a random fever that can be very dangerous for someone with a suppressed immune system. In February of this year I had a colonoscopy and Dr. Plevy told me I had the worst gut he’d ever seen in somebody as high functioning as I was. Even then, I said surgery was not an option. I kept praying that something else would work. I tried several alternative methods including strict diets and acupuncture, but nothing made any significant difference.

I was sticking in my decision until April when I was admitted to the hospital with joint inflammation and pain, to the point where I could not walk on my ankles and even sitting up in bed was extremely painful. I finally realized what while I didn’t want to live a life with an ostomy, I simply couldn’t go on with the life I was living. I made the decision to go through with the surgery.

On May 7, 2012 at the UNC Dept of Surgery, I had my colon removed and was given a permanent ostomy. Those first few days were hard. I was in pain from the surgery, hooked up to several tubes and IVs, and dealing with this new attachment to my stomach that I couldn’t even clean out myself. I remember when the nurses came in to help me change it and I got my first glimpse at my stoma. I held it together while they were there, but as soon as they left my husband and me alone, I started crying. I wasn’t sure how I would be able to ever feel the same about myself now that I’d have to wear a bag on my stomach for the rest of my life. But very quickly, I started feeling so much better that I was able to overlook the negatives.

It has now been 4 months since my surgery and I can honestly say that I haven’t looked back once after the initial shock wore off. I feel that I have reclaimed my life. I’m able to do things I wasn’t able to before because I had been so tired or just generally felt down. I am planning on racing in a triathlon in just a few weeks, something I never could have done before because any time I tried to get into running in the past, I’d have issues with “holding it in.” Once my body started feeling better, I got addicted to getting even healthier. I have a better relationship with my husband than I had before. I’m making a career change to do what I’ve wanted to do for a long time, but didn’t have the energy to pursue.

Before I decided to have the surgery, I was scared that having an ostomy would take away any hope of ever having a “normal” life. But I realize now that I have a much more normal life with it than I had had for the past 13 years with a diseased colon. I truly feel that having my colon removed has given me back my life.

This is not the life I imagined that I would be living one day, but I feel proud to know that I was dealt a difficult hand and have made it through. I want others who may be dealing with a similar decision to know that it takes a lot of strength to go through with it, but you’ll come out stronger on the other side. Personally, I felt that getting the ostomy was essentially giving up. I see know that it was actually the knockout punch I needed to beat Crohn’s.

Read more about Stephanie and her journey on her blog, The Stolen Colon.

  • Pingback: Guest blogging for “Rex Connects” | The Stolen Colon – Living beautifully with an ostomy()

  • judyintheskies

    Stephanie my best friend Daisy just had this surgery last year and she is a new person.  She sometimes speaks at group meetings for new patients that had the same surgery.  Also works at Tampa General Hospital and I can send you her telephone number if you wish to talk to her.  I am happy you are doing well.  Judy Jones
    (daughters Tiffany and Juliet from NRCA)

    • Mrs. Jones, it’s great to hear from you! And I love meeting new people who have dealt with similar situations. You can send me an email to Hope you and the girls are doing well!

  • Jaak70

    That is such an inspiring story. I struggle every day with whether we are making the right decision…This helps A LOT! Thank you

    • I’m so glad I could provide some encouragement. Thank you for your kind words. I know how hard these kind of decision are. No matter what, it’s going to change your life. But I firmly believe that if you make the decision to make it a positive change, you’ll be amazed at the difference.

  • Lisa Kapp

    Hi Stephanie.  Wow.  You’ve been through alot!  I am so glad u r feeling healthier and more energetic.  I, too, had my colon removed.  Ulcerative Colitis just came out of the blue last December and literally ate away my colon in 2 mos!!!  Loving your ‘stolen colon’ blog – such a cute name!!  Here’s my story: The beginning is ‘not so pleased to meet you, ulcerative colitis’ and ends with surgery #2.

    On a completely random note, my brother & fam live in Chapel Hill.  My sister-in-law is a professor at UNC, Kathy Roberts.  Ever have a class with her?

    U r a beautiful gal with lots of strength and spunk.  Looking forward to reading about your upcoming adventures!!!

    Lisa Kapp (from Cleveland, Ohio)

    • Thank you so much, Lisa. Phew! It sounds like you’ve been through quite a whirlwind in the past 10 months! Kudos to you for going through all that you have. It took me 13 years to get to that place. I’ll look forward to hearing how your surgery goes and how life with a j-pouch is. Good luck!

      And no, I don’t believe I ever had Kathy as a professor. But they picked the right school! 🙂

  • Stephanie- Thank you for not only sharing this with us on Rex Connects, but thank you for sharing your entire journey through Crohn’s Disease on your blog, I can sympathize with so much of what you were experiencing and describing. Going through life everyday with gut-wrenching pain that no one acknowledges—because they can’t see it or touch it—is one of the hardest things. Just like you, I have had Crohn’s Disease for almost half my life; diagnosed at 14 years old. It can be an ongoing (and quite frankly, exhausting) struggle to get it under control. My path to remission was with Remicade, and still is. I am so glad we have found treatment paths that led Crohn’s to take a back-seat so we can finally enjoy the ride. 🙂

    • Thanks for sharing, Sarah. Always good to meet a fellow “crohnie.” 

  • Nick

    My brother had this surgery when he was 19 and it literally saved his life.  He’s not completely issue free now but it certainly gave him another nearly 20 years of life that is certainly far superior to the one he’d have (or not have at all) without it.  I hope to never need it but I don’t think I’ll hesitate if it comes down to it.