My Story with Crohn’s Disease

My story with Crohn’s Disease may be a familiar one to you – whether you’ve suffered hours alone in the bathroom or spent many a night in a hospital room. I share my story to give hope to those currently struggling, unable to see a light at the end of the tunnel.

I was about eight years old when the symptoms started sneaking in. A little bit longer in the bathroom, loss of appetite, and a dip on the growth curve. Pediatrician visits left us with recommendations of drinking more milk. A little bit longer in the bathroom turned into hours spent there. Drinking more milk left us with more weight loss. One more visit to the docs at the age of eleven told us we needed help. I went to a gastroenterologist at Children’s Hospital of Philadelphia. After an upper GI, endoscopy, and colonoscopy (all very traumatic to a young girl who has never been sick), a confirmation for Crohn’s disease had been made. I was inflamed the whole way through – esophagus to rectum.

The GI doctor I was seeing put me on prednisone, Nexium (esomeprezole), Pentasa (mesalamine), and Purinethol (mercaptopurine or 6MP). I was a shy, timid little girl and the prednisone turned me into a chubby-cheeked monster, especially in soccer. It must have been a sight seeing a tiny little girl elbowing and pushing the opposing team around in recreation soccer! The 6MP caused me to be extremely sick, vomiting for days on end. Eventually, we learned we had to slowing titrate the dose up for my body to handle it. Eventually the prednisone was switched to Entocort, another steroid with much less side effects. I had a time weaning off of this, but after about six months I was able to stop the steroids.

I did well for a short amount of time, but the weight started to drop again. Recommendations for a nasogastric tube were placed, but I refused as long as I was let to. The spring before I started high school, we gave in and started NG feeds. I hated them, but after a few months, I learned to place my own tube every night and remove every morning. I learned to program the pump and set up the feeds. I even gained a small amount of weight, and did well for the summer.

The following autumn my weight declined again, constipation took over my life, and the abdominal pain I was experiencing I just could not handle any more. This was the lowest point of my Crohn’s disease. My time was spent in the bathroom, wondering about where a bathroom was, if I could even go to the bathroom when I found one, or sleeping from all the energy lost on the previous. I rarely ate and weighed about sixty pounds as a fourteen year old. In the late fall, I found myself in CHOP’s emergency room with contraction-like pain. I wound up being obstructed with a severe stricture in my rectum. It was soon dilated (a procedure to stretch strictured intestines) and I was able to pass months worth of food stuck in my body. I felt like a completely brand new person, and am so thankful to the surgeon who discovered it, Dr. Mattei.

I was able to eat again and gain weight, up to ninety pounds! I did decently well until I was sixteen. Two more strictures appeared – one in my colon and one in my ileum. To prevent more obstructions, it was decided that these two strictures be removed. The stricture in my rectum had to be left in as it was too close to the end for me to be able to function properly. This surgery went well with no complications, that is, until about a week later. The stricture they were unable to remove caused a backup of food, stretching the parts surgically connected together. They burst open, and I wound up with peritonitis. An ileostomy bag was placed in an emergency surgery on October 29, 2009. My colon was left in place to eventually have reversal surgery.

Here I am, almost eight years after that surgery with a bag still attached to my side, and I couldn’t be happier. I decided fairly early on that changing a bag was much easier than dealing with a stricture, and decided to keep my bag. It is not technically a permanent ileostomy as I still have all the parts to be reconnected.

Soon after my ostomy surgery, I wondered if there were any others my age going through the same things as me. One of the first videos I ever posted was called “My Story with Crohn’s Disease”, just to see if anyone would respond. To my surprise, people all over the world began contacting me, sharing similar stories! I have used my story to help others feel confident with their bodies, I have modeled different ostomy products, and I even became a nurse! The nurses who cared for me inspired me, and I now work at Children’s Hospital of Philadelphia on the exact floor I was cared for. I am always amazed by the children with Inflammatory Bowel Disease who are resilient and hold their heads high through the pain. I feel so lucky to be one of the first people to see these children place their own NG tubes, change their own ostomy bags, and learn to care for their diseases.

I am no longer on any medications for my Crohn’s disease but am closely monitored by an adult GI doctor for signs of flares. My plans for the future is to continue working on Let’s Talk IBD and eventually go back to school to earn my Wound, Ostomy, and Continence certification to further help bowel-diversion patients.

Let’s Talk IBD,
Maggie Baldwin

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