Category Archives: Guest Post

Finding a new normal

I have been so thankful over the past couple of years to have gotten to hear from so many of you and learn about your stories and your challenges and your triumphs. My goal has always been to create a community where we can all share our stories and the things that we have learned during our time living with an ostomy. So I wanted to provide that place for all of us to share our personal OstoMYstory.

Brandon’s story

My softball team lost every game we played this fall, but that was never the point. Not to me, at least. Twice a week for an hour at a time, I got to feel normal again. Of course normal is relative. Ever since my surgery in April, I’ve been adjusting to life and a new normal with a permanent ileostomy and a constant reminder of my exhausting battle with Crohn’s disease. But when I was on the field, that was the last thing on my mind. In my eyes, that made our season a success.

Brandon Boatwright crohn's story OstoMYstory stoma ostomy crohn's disease ulcerative colitis ileostomy colostomy urostomy inflammatory bowel disease ibd stolen colonI was diagnosed with Crohn’s in 2012 when I was 22 years old and fresh out of college. Most of my friends were starting jobs, getting married and buying houses. Meanwhile, I was alternating most of my time between my gastroenterologist’s office and the hospital. I tried to find the words to describe the way my symptoms felt to friends and family, but always thought I failed to capture the true depth of intense pain, isolation and humiliation I felt with this disease.

My tipping point came at the beginning of 2014 when I realized the biologic therapies we tried were not working. I was dependent on steroids, had lost 40 pounds and was alarmingly anemic. My GI offered two options. First, a new drug combination that would increase my risk (albeit remotely as a young adult male) of developing a rare form of leukemia that was untreatable and fatal. My second option was the surgical removal of my large intestine, and a permanent ileostomy. Which devil do you want to dance with?

I took a leave of absence from my job as a public speaking instructor at Clemson University, and at 6:30 a.m. on April 1, I was wheeled into the operating room. When I woke up around noon, I remember being moved to my dank little hospital room, watching a basketball game on TV, holding my mom’s hand and then falling asleep. I never looked at my stomach.

That came on day two in the hospital when I finally mustered the courage to peek under my linens. Tubes and cords and finally, it – my ostomy. I figured we might as well get to know each other considering we’d be living together for the foreseeable future. Our courtship wasn’t easy. It took two weeks to get out of the hospital, and even after that it seemed like we couldn’t get on the same page.

I had one night where I let myself completely break down and feel sorry for what had happened. But any more than that, I felt, was unnecessary. It took a few weeks before I realized just how much Crohn’s had taken from me, and what this surgery was giving back.

Eventually I started walking around the neighborhood with my mom and dad. My sister and brother-in-law would bring by my baby nephew to play with. My pastor would stop by to pray with me. Friends and family members sent friendly cards, texts, and visited. I even began to eat things that I never would have been able to because my evil gut would have destroyed my ability to enjoy them.

One evening I was watching the news after dinner, and heard an interview with a survivor from the Boston marathon bombings. She had lost a leg as a result of the attack, but never her optimism. She said, “Our scars are just proof that we are stronger than what prompted them.” That helped me realize that I was and am stronger than Crohn’s. I’m alive because of the surgery I elected to have. And not just alive, but happy. No longer dealing with the pain and anguish associated with Crohn’s, or the fear that I would never be normal again. But I am. We are. Normal.

The Stoic philosopher Seneca once said, “As long as you live, keep learning how to live.” Having an ostomy doesn’t mean I’ve entered some alien state of being. It quite simply boils down to learning how to live out a new normal. I’m alive. And I can play softball.

You can follow Brandon on Twitter @brandoncb10.

#OstoMYstory

From the mother of a Crohn’s disease patient

In honor of Mother’s Day, here is a post from a very special mother. She has been by my side, all of these years, fighting for me as I tried to navigate this life living with Crohn’s disease. Mom, you are such an amazing, beautiful, godly, strong woman and I am so proud to call you my mother. I know I would not be the woman I am without your love and support. Happy Mother’s Day!

One of the greatest fears of a parent is to have something bad happen to their child. I remember watching some telltale signs of weakness in
Stephanie, knowing she was running to the bathroom, and feeling generally lousy. Was it a stomach virus, salmonella, even a parasite? One by one, these were ruled out by medical tests, while Stephanie was getting more tired, paler, and thinner.

Our family doctor wanted her to see a GI, and he ran more tests, while telling me ‘not to jump to conclusions’ when I asked if it could possibly be Crohn’s.
He wanted to try some oral meds, and wait for them to work, while Stephanie continued to get weaker, paler, thinner.

stephanie hughes crohn's disease sick hospital lost weight child kid duke stolen colon ostomy colitis blog family parents sistersUltimately, we wound up with the pediatric GI team at Duke Hospital, and a correct diagnosis was made and treatment begun. My 75 lb. Stephanie, now only 50 lb., would spend the next 25 days in the hospital, and the following year recovering. Mother’s Day 2000, I was happy to have my baby on the mend – even though she was full-faced from all the steroids, hair in complete disarray as so much had fallen out, and now new hair was coming in underneath, but she was alive!

Several Mother’s Days since have been spent at her bedside, or walking the floor praying for strength for her. Mother’s Day 2008, we proudly watched her graduate from UNC Chapel Hill, thankful she made it through, sometimes on sheer will and determination. Mother’s Day 2012 was celebrated at her home, as we tended to Stephanie, just home from the hospital after her Ileostomy. Mother’s Day 2014 – my baby is feeling great, in Italy on a second honeymoon with our wonderful Jarrod.

I may not know what tomorrow holds, but I know Who holds tomorrow. Happy Mother’s Day to all women who are, will be or have a mother.

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Life, love and motherhood with an ostomy

Lori’s Story

Today’s post is actually The Stolen Colon’s very first guest post. This post is written by my good friend Lori. She and I first connected about a year ago online, realizing that we have shared many of the same battles throughout our lives, and soon figured out that we live just a few hours away from each other. We have kept in touch ever since and I had the amazing privilege of finally getting to meet her in person just a few months ago. And I have found that she’s even more amazing that I originally thought. I hope you enjoy getting to meet her, as well. I’ll let her take it from here.

lori zubrod braden mother son crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy patient hospital surgery parent blog stephanie hughes stolen colonIn 2002 at the age of 24, and 9 months after getting married, I was diagnosed with Crohn’s disease.  Like most people, I had no clue what this disease could do or what it meant. After 5 years of living with Crohn’s – I knew I was ready to be a mother!  At the time, I was taking Remicade and Imuran.  Stopping the medication during my pregnancy was not an option. The disease was too severe.  In spite of this, I was able to give birth to a very healthy 9-lb baby boy.

Years on steroids and being on several medications had their side effects.  I was in constant pain and swelling, and I was losing my hair.  I had become very frail.  I sustained a couple of painful injuries, including the time when I fell and broke both of my elbows.  The continuing complications and the added stress to my quality of life, on top of still experiencing very active Crohn’s, helped me to decide that it was time for a change.

In 2012, I underwent a total proctocolectomy.  A week prior to my surgery, I shared the news of my scheduled surgery with my five-year old son.  I explained that I would be in the hospital for about a week.  He came over to me and reassuringly placed his hands on my very swollen cheeks (from all the Prednisone) and said, “Mommy, the important thing is that you feel better!”

lori zubrod braden mother son crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy patient hospital surgery parent blog stephanie hughes stolen colonAfter a 9hour surgery, and a permanent ileostomy, I was finally able to gain control back in my life.   My hair grew back, the swelling from all the steroids subsided, and almost immediately I could tell a huge difference in my pain level.   I had hidden my illness for so long, that I forgot what it was like not to make twenty trips to the bathroom in a day or be in so much pain that my husband would have to pick me up off the floor.

My son, who is now six, calls my ostomy bag “my patch” (yes, he might be a little obsessed with pirates!),and loves that we can once again do all the things we love as a family without me being too sick.  I was so worried that having an ostomy would negatively impact my life, that I wouldn’t be able to cope with the stigma around it, and that I would never be able to resume all the activities that I loved and missed so much.  Little did I know, I wouldn’t have to give up anything.  It restored the once lost “quality of life” to me.  We can swim, spend hours on the beach, and I lori zubrod braden mother son crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy patient hospital surgery parent blog stephanie hughes stolen colonnever have to worry about my bag or being close to the bathroom.  I haven’t even had to change my wardrobe and my bag stays perfectly hidden even under a swimsuit!

One of my greatest fears, losing my colon to this horrible disease and the unknown impacts it would bring to my life, became my reality.  My ostomy has not only changed my life and my health, it’s also brought some amazing people into my life.  I’ve learned how to love and give back in a whole different way.  It’s taught me not to use my disease in a way that hinders my life, but to share it to teach others.  My hope is that this experience teaches my son that being different is OK, and that you can lead a beautiful life regardless of the obstacles.

#OstoMYstory