My story
Just about a year ago, in February 2021, my whole life changed. My husband took me to the ER with abdominal pain so bad I could not breath. The ER doctor immediately asked me if anyone in my family had diverticulitis. Of course, I thought here we go again…another new diagnosis I must have as I immediately said “Yes! My Mom! He said I am 90% sure this is what is going on. After 2 CT scans, he finally came into the room he said “You have intestinal malrotation” … and my head began to spin. What the heck is this? Am I going to live? I have never even heard of this before. He recommended I go home and learn about it. And that’s when my life changed…it was a profound time. I began researching and looking into everything I could find to understand what was wrong with me. There isn’t a lot out there and it left me thinking I was broken. There were so many things going through my head. My mom put me in touch with the surgeon who operated on her perforated colon the year before, and in June 2021 she performed a LADDS procedure, which ultimately was unsuccessful. I continued to research and found this wonderful Malrotation group on Facebook. Ahhh…the power of social media! What an eye opener this group has been for me. They have validated my life for almost the last 30 years! I am hearing that no, I was not lazy for not being able to do sports, that every time I was feeling pain from running or jumping, they were symptoms of intestinal malrotation. That the mornings of throwing up, it was not the medication making me sick, it was intestinal malrotation. That the abdominal pain was the fibroid, and also the intestinal malrotation. I was not just making this up, as everyone thought I was and even I began to question. Let me start at my beginning. I am 37. In elementary school I always wanting to be active in sports and kept trying. I never felt good during or after and my stomach would hurt and I would be so tired. I just always thought it was me and I was not very good even though I would try so hard. I tried one sport after another. I finally just gave up and went to art. I really didn’t express it too much and there was no explanation as to why I was feeling this way. Time went by then I was constantly having constipation issues. Well, when you grow up in an Italian family and there was always massive bowls of pasta and homemade bread nearby, we just assumed that I was eating too much of this wonderful binding food. I took stool softeners to try to help. By the time I reached high school, I was diagnosed with PCOS for weight gain and menstrual cycle and pain issues. That’s when the horrible, never ending, vomiting started. Like clockwork, almost every morning and still to this day. But we again presumed it was the medication Metformin I was on and could not tolerate it. My doctors just thought I had a hypersensitivity to it, pulled me off, and left it at that. Let’s skip to three years ago when I started have horrible abdominal pain. I went through a number of tests and discovered I had a fibroid in my uterus and adenomyosis and I needed to have a hysterectomy after failed other treatments. And this brings me to just about a year ago when my life changed February 2021 and how I started my story above! Today I was supposed to have an appointment with Dr Kareem and his team. I was disappointed they had to reschedule for 2 weeks, but to say I am as excited as I am anxious is an understatement. This group, and the support and information I have learned from everyone has given me some of my strength back to fight again…fight for me to have a normal life. Fight to maybe not throw up every day. Fight to not have diarrhea or be constipated every day. Fight to not have pain every day. And fight for a normal, active life with my family and friends. I realized when reading the book a fellow Intestinal Malrotation member wrote, “ Turning Life into Lemonade” that all those years, all my pain, fatigue, vomiting and diarrhea issues were symptoms even at a young age. All we did was find other things to blame them on. That there where sooo many signs, but we never thought to look into them because we thought it was just me. 2 years ago my life changed..some in great ways, some in very painful ways. While I am not fixed yet, I know I am with the best medical team in the world, have a great support team, am stronger mentally, and convinced I am on the right path to finally find some normalcy and peace.
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Jan 15, 10:07 am EST