26 Oct Life Takes Guts

For many people living with Crohn’s disease, life can involve urgent trips to the bathroom as well as pain. For some, Crohn’s can even be deadly. Living with a chronic disease like this can be difficult and isolating. In severe cases, the disease can lead to bowel obstruction, fistulas, and ulcers. I’ve unfortunately experienced all three.

In the 16 years that I’ve had Crohn’s Disease, I have had 3 surgeries and a temporary ostomy, which have all been in the last 15 months.

I kept telling myself I was the lucky one. I was okay living the way I was -despite being in pain most of the time. But despite having the best care, I never knew what was going to happen next. I am definitely not the usual case, but who do you know that has a normal case of Crohn’s Disease? Each case is unique and no two people have exactly the same disease. It’s crazy!

My beautiful family

In April of this year I made my husband drive me to the ER. The pain I was experiencing was like nothing I’d ever felt before. Within 30 minutes, I was rushed for a CT scan with the suspicion of a blockage. Sure enough I had a massive intestinal blockage which was caused by scar tissue (from years of having this terrible disease). After the weekend in the hospital, I set up an appointment with my gastroenterologist.  We decided together that surgery was probably the quickest way for me to get my life back together. But I didn’t know what was really in store for me.

The day I met with the surgeon was probably the worst day of my life. You would have thought she told me I was dying. In fact, all she told me was that I would need to have a stoma. For anyone who doesn’t know what a stoma is, well it means a ‘bag’. It’s the three-letter world that no one with Crohn’s or Colitis ever wants to hear.

She would need to remove about 30 cm of my small intestines and would not be able to reconnect the remainder back to my colon right away. She would take the healthy piece of small intestine, fold the outer layer back and suture the inner layer to the outside of my abdomen. The piece outside my body is referred to as a stoma.

This was going to be my new way of going to the bathroom. The bag covers the stoma to catch all of the body’s waste. I thought my life was over.

How was I, a 36 year-old mom of 3 young kids with a healthy relationship and a career supposed to live with a bag?

I spent the whole weekend in bed, crying. My husband however, spent the whole weekend researching. He has always been very understanding and supportive when it came to my disease. On the Monday morning I went to talk to a therapist. She really was able to put a positive spin on the situation. She told me everybody goes to the bathroom. What’s the difference if you go in the toilet or in a bag. She got a smile out of me because I then realized how much cleaner it would be to go in a bag versus a dirty public restroom.

Once I came out of my pity party I decided to do some research of my own. I looked up pictures, success stories, blogs, joined support groups, watched YouTube videos, Googled complications and much more. The surgeon had told me there was a 5% chance I wouldn’t end up with a stoma. Even though she told me not to hold on to that 5%, I couldn’t help it. I kept telling myself it wasn’t going to happen to me. Things like this don’t happen to people like me. She told me that the reason that I would need a bag was because of all the steroids I had to take for the blockage. Steroids have some nasty side effects. In my case they made me blow up. My face was swollen, which is medically referred to as a moon face, so she was concerned that my intestines would also be swollen and she wouldn’t be able to connect – because when the swelling went down I would be a major risks for leaks which could be fatal.

In fact, the reason I ended up with the bag was because my sigmoid colon was on the verge of exploding – almost as if there was a string tied around one end and the other was ballooning…YIKES! How could this all be happening while I was going about living my life as if everything was normal and fine.

The morning of the surgery I cried all the way into the OR. Before they put me to sleep I begged the surgical team not to kill me; to get my children’s mom back to them.

Waking up in recovery was scary. All I felt was pain. I had no idea what had happened but I was so happy to be alive that nothing else mattered.  It wasn’t until the following morning that I asked my husband to come over and look at my belly with me. Luckily for me, the surgeon was able to perform the entire surgery laparoscopically, which meant very small incisions rather then my whole abdomen sliced over from chest bone to groin.

Living with an ostomy definitely has its ups and downs. I had the best 3 months of my life with the ostomy; no pain, no running to bathroom, no worrying that I wouldn’t make it to the bathroom, eating whatever I wanted (with some limitations) and learning what it was like to live without pain.

My ostomy

The morning of my ileostomy takedown, which means my reversal, I took a black thick sharpie a wrote a goodbye message to my stoma. SMELL YA LATER!!! The surgeon later told me how everyone in the OR high fived because not only did the takedown go so well but they whole team was so happy for me to start the first day of the rest of my life.

I don’t know about you, but I could have been at work, home or even out with girl friends and feeling like I was dying and still not look sick.  It’s definitely both a blessing and a curse…. simultaneously.   I’m all for looking good, but sometimes people don’t believe how sick I am because I don’t look it – but I guess I’ll take it.   I would like to say that I’m typical, but the things in my life are anything but typical and I’m okay with that.

Today, I am healthy and Crohn’s free.

I don’t know what tomorrow will bring because living with an autoimmune disease, you never know if it will come back. But today I start my life. I’ve earned the chance to enjoy every minute and live pain free.

For everyone or anyone living with Crohn’s or Colitis, you are not alone. Support groups are incredibly helpful – both in being able to share you story and hear those of other’s in a similar situation. I have a large support team, more then half of which I’ve never met, but it’s because of all of them that I survived, that I got up everyday and continued to fight my battle.

-Natalie Ornstein

My name is Natalie. I’m a busy mom of 3 beautiful children and work part time as a dental hygienist. I love connecting with others. I’m sharing a lot of my personal journey to help encourage others that even though you feel like you are the only person going through a difficult time you are not alone. Please feel free to ask questions and let me know what’s on your mind.