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

Stories

Intestinal Malrotation Stories

Gillian's Intestinal Malrotation Story

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I had a happy, healthy life until I began getting sick at age 18. It was the fall of my first semester in college and I was studying interior design.

My symptoms began slowly. At first I just felt exhausted all the time, then I began experiencing pain, constant nausea, bloating and constipation. I often felt extremely hungry but something as small as a piece of toast would cause my stomach to swell up, and I’d have to lay down because I felt so sick.

From the moment my symptoms began they were constant and never really subsided. Everything seemed to come out of nowhere, one day I was happy and healthy and the next I was having problems that wouldn’t stop.

My health began affecting other aspects of my life. Prior to getting sick I had enjoyed working out daily and going out with friends. After my symptoms began I was too tired or in too much pain to do the things I once enjoyed. No one seemed to understand how sick I was. People would say “But you don’t look ill,” as if it was something they should be able to see. By the end of the semester I had no friends and stayed in my dorm room most of the time. I became very depressed, it felt like the rest of my life was going to be spent in pain.

I began seeing a gastroenterologist and had a series of tests done. Finally, a magnetic resonance enterography (MRE) indicated I had intestinal malrotation. Initially my GI felt intestinal malrotation couldn’t be the reason I was in so much pain. I knew they were wrong and pushed for a referral to a surgeon.

My surgical consult for the Ladd’s procedure did not go well. The nurse practitioner came in and said, “Wow malrotation, we haven’t seen one of these cases in a while.” This comment immediately raised a red flag about the surgeon’s level of experience with malrotation. When the surgeon arrived she claimed she’d done the Ladd’s procedure several times but she could only tell me how two of her former patients were doing after surgery. Some of the things she told me about malrotation were inconsistent with what I had researched which was scary to me. She wanted to set a date for surgery but I wasn’t comfortable with that. I decided to wait and explore other alternatives.

I began researching my options and learned about Dr Kareem at the Cleveland Clinic. Unlike a Ladd’s procedure, Dr Kareem was performing a revolutionary new procedure that placed the intestines in the anatomically correct position. His surgery was more complicated than the Ladd’s procedure but had many positive outcomes. I decided to submit my information to see if I was a candidate for his surgery.

As I waited for approval from Dr Kareem and my insurance company, my health continued to decline. I wondered if I would ever be well again. After three months of waiting, I finally got a call saying I was approved. I was so happy and relieved I started crying.

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Dr Kareem’s surgery had a more difficult recovery process than a Ladd’s procedure. I was scared to undergo such major surgery but after my first appointment with Dr Kareem I knew I trusted him 100%. It was clear right away that he truly cared about his patients and their families. At my preoperative appointment I was shaking because I was so nervous. Dr Kareem gave me a big hug, took my hand and said “Don’t worry I’ll make you better”. That calmed me down because I knew he would keep his promise. My surgery was scheduled for a month later.

The surgery with Dr Kareem lasted 6 hours. Recovery was the hardest part of the whole thing. I was in the ICU for three days and spent a total of 15 days in the hospital. I usually have a very high pain tolerance, but my post operative pain was so bad that even now I don’t know how I made it through. Emotionally I was not well. I felt very scared that I was going to die. This thought was stuck in my head even though I had been assured several times that my recovery was going well. My family helped keep my spirits up. My mom stayed with me 24/7 and my dad was there during the day as well. Visits from my brother, aunt and friend helped distract me from the pain I was in.

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It’s now been a year since my surgery and I am doing great! I feel the best I have ever felt in my life. I’m able to eat whatever I want, I can workout again, and I just returned to school this fall. I owe this all to Dr Kareem and his transplant team. I can’t even begin to describe how thankful I am for everything they’ve done for me. I finally have my life back and am healthy.

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