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

5 thoughts on “Life, love and motherhood with an ostomy

  1. Jason

    Awesome story!!! I’ve had my ileostomy for almost 5 years now. I was 23… Feb of 2009 became deathly ill, pure blood came out of me for several weeks. Was diagnosed with Ulcerative Colitis. Was toxic mega colon, spent 64 days in the hospital! Surgery was Aug of 2009 at UAB in Birmingham, Alabama. They were able to leave some of my rectum for reversal one day.

    One of the roughest moments in my life. I stayed positive, and everyone I knew and didn’t know were praying for me! I am very blessed to be alive! Life after is awesome now! And my bag I call “Stomy” is second nature now, like brushing my hair or teeth. =)

    Reply
  2. Jo Lewis

    Such a great post, just what I needed to read right now! Facing the decision for or against a permanent ileostomy at the moment and my circumstances are very similar. Can I ask if you still get any other crohn’s symptoms? So good to hear this positive story, thank you xx

    Reply
  3. Lori Zubrod

    Thank you! Jo, I can honestly say that my Crohn’s has been much better since my surgery. My quality of life has improved greatly! I would check with your doctor to see what medications he or she would recommend after surgery. I will be happy to discuss in more detail if you like, or you may inbox me on facebook. Best Wishes, Lori

    Reply
  4. Sarah miceli

    My daughter leoni is now 10 and has her colostomy since she was 3. It started with constipation and diarrhoea when she was 2 weeks old. The GP said it was quite normal and gave her lactulose. The GP finally referred her to hospital at 18 months. There the consultant was rubbish and just kept giving her mediation. At one stage she was taking 4/5 different medications all designed to make her go to toilet. By May 2007 leoni started passing faeces out of her vagina. She was referred to addenbrookes hospital that day and was told she had a prolapsed colon, rectal vaginal fistula, anal stenosis and was taken to theatre the next day. Her colostomy was reversed in 2008 but without success. Leoni has been in and out of hospital ever since with blockages and a prolapsed stoma. We nearly lost her in 2010 after 2 ops in 3 weeks. It has been a roller coaster but throughout all of this leoni is quite happy with her colostomy. We recently went on holiday and she wore a bikini and couldn’t care if anyone looked at her. Her ostomy is part of her and she is proud of it as it saved her life. She doesn’t let things get in her way. She plays football for m/k dons and she has an England scout after her and has been told she will definitely be playing for England in the next couple of years. I’m so proud of leoni

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