Intestinal Malrotation Foundation
Spreading Awareness and Offering Resources to Families Dealing with Intestinal Malrotation

Stories

Intestinal Malrotation Stories

Anissah's Intestinal Malrotation Story

AnissahIMF1.jpg

I left school early one spring day when I was in the eighth grade. I felt crummy, my chest hurt and I was coughing uncontrollably. It wasn’t until I went to bed that my stomach began to hurt. Later that night I woke up in excruciating pain, but at 13 years old it was hard to describe the severity of the pain to my mom. She sent me back to bed thinking it was just cramps.

The next morning before my mom left for work, she came into my room to check on me. I told her I thought I was feeling better, but by the time I started getting ready for school I was in so much pain I couldn't stand up straight. I called my mom at work and she scheduled an appointment with my primary doctor.

On the drive to my appointment the pain was so severe I felt like I was dying. My primary doctor thought my symptoms were consistent with acute appendicitis and ordered a CT scan to check. An hour later she came back to give us the results. She explained to my mom that I had intestinal malrotation rather than appendicitis, and needed surgery. She didn't speak directly to me, though I was in the room when she told my mom. The second I heard the word "surgery" my stomach dropped.

My doctor said we could either go to Sanford Children's Hospital in Fargo, ND or wait a day until a surgeon was available at our small town hospital. I was in so much pain that the idea of waiting for surgery scared me. My mom insisted we go to Fargo right away, she wanted to make sure I was in good hands.

As we drove to Fargo my mom described a Ladd’s procedure to me, but I didn’t understand it. She explained that my appendix was on the left side of my abdomen, so I tried to imagine what my insides actually looked like. She described a laparoscopy as cameras being put in my abdomen to look at my belly which I thought sounded cool at first, but then I got scared because it dawned on me that I would be having surgery within the next few hours.

AnissahIMF3.jpg

Soon after arriving at Sanford Children's Hospital in Fargo I was transferred to the operating room for a Ladd’s procedure. The next thing I knew, I was waking up in recovery.

The surgeon explained to my mom that we were very lucky, my pain had been the result of acute appendicitis rather than a volvulus from malrotation. Due to malrotation, my appendix had been located on the left side of my body under my belly button, which could have made diagnosing my appendicitis very difficult. Even though I hadn't had a volvulus, the surgeon had decided it was in my best interest to perform a Ladd's procedure to reduce my risk for volvulus in the future.

After surgery I had a lot of trouble sleeping because of the pain, but it helped to have my family by my side. My pastor even drove an hour and a half to come and pray for me. Everyone was so supportive. My dad told me I needed to learn to embrace my goofy guts. That was the day my new nickname “Goofy Guts" came to life.

I didn’t realize until after my operation that I had always had issues with my bowels. When I was younger, I only had bowel movements every few days, which I thought was normal.  My diagnoses made me more aware of my body and health.

Several months after being diagnosed with intestinal malrotation, I had an EKG which revealed I also had Wolff-Parkinson-White syndrome. Wolff-Parkinson-White syndrome is a congenital heart defect that affects the heart’s electrical system. A year after my Ladd’s procedure I had a heart procedure to ablate an extra electrical pathway in my heart.

AnissahIMF2.jpg

Recently, my sister began experiencing abdominal pain that was similar to mine. My mom brought her to the emergency room to be checked for appendicitis. They did a CT scan which showed she also had intestinal malrotation. She was sent to Fargo to be evaluated, but her symptoms resolved, and the surgeon who evaluated her decided she did not need surgery at that time. She is familiar with the symptoms of volvulus in case anything changes in the future.

Since my intestinal malrotation and heart surgeries I have been doing great. I’m currently in high school and have been able to participate in track and swimming. I'm planning on going to college as a music education major in a few more years. I love performing and am teaching myself piano. My health is currently better than ever!

 

If you would like to share your experience with intestinal malrotation, please send us an email for more information.