My Crohn’s disease journey started at the age of three. The days consisted of many emergency rooms, and doctor visits. No one was able to give my parents and me an answer. Some of my symptoms included: rectal bleeding, painful bowel movements, nausea, vomiting, fevers, no appetite, mouth ulcers, etc. Four years later I was with a doctor who just kept putting me on prednisone and didn’t have a diagnosis for us. One day he had an accident and another doctor came in to take over my appointment. He talked to my parents for about ten minutes and said it sounded like Crohn’s disease. He had me get an immediate colonoscopy, and I was badly diseased. At seven years old, we finally had an answer.
We then started going to another hospital and found a new Gastroenterologist. I started Remicade infusions at eight years old. Then at age nine, I got a permanent ileostomy. I had a total proctocolectomy, which was the removal of my large intestine, rectum, and anus. My bottom was sewn shut. There were some problems during recovery, but we got through it. It was a significant change, but it saved my life. It gave me a better way of living. I wasn’t crying and yelling for my parents anymore while I was on the toilet. I was able to eat and gained my appetite back. There is no cure, but there are ways to make things better. Sometimes, it’s with medicine, surgery, or even both. In my case, my stoma (my buddy), saved me.
My ostomy changed my life in a couple ways. Primarily the fact of having a new way to have a bowel movement. There was also the aspect of having something different than everyone I knew on my belly. On a side note, getting it when I was so young was beneficial. It is something that I have grown up with. If I woke up tomorrow without one, I don’t know what I would do. Third, I do have a specific diet that I was told to do. Everyone is different, and there are some ostomates that can eat more than I can. Personally, I avoid raw vegetables, nuts, corn, popcorn, and skin on foods. All foods that are hard to digest, I avoid.
When I was thirteen, I developed an abscess and fistula. I had debilitating belly pain, no appetite, nausea, loss of weight, malnourishment, etc. Once they figured out what it was, they had to get me healthy before surgery could take place. I had to get a broviac inserted into my chest, and that was how I received my nourishment for a while. They inserted a tube in my stomach to drain my abscess, and I couldn’t eat. I recall telling my parents that once I was permitted to eat, I wanted Texas Roadhouse, Burger King, Taco Bell, etc.
When I was healthy enough, the surgeon went in and repaired the fistula. He also relocated my stoma to the opposite side of my abdomen and had to take a little bit of small intestine out. I then had a hole where my previous “buddy” was. We had to pack it daily to help get the infection out. My parents were such amazing troopers during all of this. I feel bad that they had to go through all of this, but they were amazing. They are some of my biggest advocates, and I don’t know what I would do without them.
I haven’t had any other surgeries since then, and I am happy my ileostomy saved my life. I still have had flares here and there with my Crohn’s, but nothing like the past. I also have some other health conditions that I deal with, and I still get monthly Remicade infusions. This year marks nineteen years of being on this biologic
I’ve always wanted to help others. I had dreams to be a Remicade infusion nurse, an Enterostomal Therapist, or even a Gastroenterologist. I had some health problems occur in my early twenties that made me change my thoughts on what to become. At age twenty-two, I stopped working to focus on my health. I have always tended to overdo things. My husband and parents were concerned for me and wanted me to stop working. During this time, I found my perfect dream. I was able to advocate and help others with Crohn’s/Colitis. I started a local support group for patients with IBD and family members associated with a loved one with IBD. My husband and I started painting rocks to raise awareness for Crohn’s and Colitis and hid them places for people to find or add them to goodie bags for fellow IBD fighters that we meet. I have spoken at different events with my local Crohn’s and Colitis Foundation Chapter. I also have talked to students in the medical field about IBD and ostomies.
About a year ago, I saw some amazing things being done by Patient Coaches. I was very intrigued with what a Patient Coach was. I found out about them on Twitter and Instagram. I then started following different people on social media and everything that was a part of the Patient Coaches. I was amazed about what they were doing and had to find out more. 11 Health helps to break the stigma on ostomies, and to have better ways to go about ostomy health problems that can occur. Being a Patient Coach will give me great joy to be able to share my knowledge of being an ostomate and to help others through their journey.
My advice to fellow ostomates would be that you can do this. An ostomy can help you have a better life. There is nothing wrong with them, and they don’t stop you from living!
Are you about to undergo ostomy surgery? Check out all the Patient Coaches and learn more about them. We are here for you!