Living Well with J-Pouch

 

How can you live well with a J-Pouch as a young college student? This is first in series from Bella Soul partnership with Chronically Driven

 

 

 

On November 4, 1993, my loving parents welcomed me into the world. While my birth was certainly a blessing for them, I suspect that the following days were less of a joyous occasion than they expected. I spent my infancy in the hospital as doctors tried to find a formula I could digest, but they were consistently unsuccessful. Finally, my desperate but hopeful grandmother tried her own experiment. The resulting formula, my body decided, was acceptable. I lived a relatively healthy thirteen years after my initial illness, sustaining tolerable gastrointestinal issues. The story of how my grandmother saved my life inspires me daily to make her proud and to become the best possible version of myself.

At about fifteen years old I was diagnosed with inflammatory bowel disease (IBD) and at eighteen, I was college-bound. Initially, I was ecstatic. I met new friends and flourished in my collegiate studies. Then, my colon started a coup d’etat with a roar. By my second semester, I was taking 60mg of Prednisone, along with other oral medications, suppositories, and enemas. It was a cruel awakening that I was not an average college student. The side effects of the steroids were brutal: my exaggerated moon-face stared at me in the mirror and I could not take stairs because my joints hurt so badly. I spent more time in the bathroom than I did in the dining hall, and I was constantly in pain.

After finishing my first year academically successful, with a completed internship, and involved in multiple campus organizations, I rushed home.

For over a month, I only left my bed to run to the bathroom or to the hospital and I could not eat anything.

In June, my gastroenterologist decided that I needed to have an emergency total colectomy. I had very little time to prepare before I woke up in a hospital bed with a brand new ileostomy. The first few days I refused to look at my stoma and I was too disgusted by my new body to even call it my own. Eventually, however, I accepted help from friends and family as I adjusted to my new body and I quickly learned to care for my new digestive system. By the end of August, I was independent and self-sufficient in ostomy care.

It was not long, however, until my body changed again. By December, I was in the operating room.

My doctors and I decided to try a J-Pouch system, an internal pouching system, instead of an external one. This surgery was extraordinarily difficult with unexpected complications and it lasted 12 hours. My intestines flipped and blood supply to them was briefly cut off. Thankfully, my doctors were able to fix the situation but the road to recovery was even more painful and difficult than the first surgery. Luckily, a third surgery in April went smoothly and now allows me to use my functioning J-Pouch.

While I am thankful for my J-Pouch, it does not come without complications. I need to closely watch my diet, liquid intake, and iron levels as I am often dehydrated, anemic, and intolerant of many foods. Managing these symptoms carefully takes conscious energy, but the reward of feeling well is outstanding.  With every health struggle I face comes its own little triumph. Each day I lived with awful pain was another day alive and another day I beat my disease. Each time I changed my ostomy appliance was another victory and another reminder of the strength and power I have to improve my health conditions.

With my college graduation approaching in 2016, I feel as though each struggle will shine as a major triumph as I accept my diploma. I am on track to graduate at the top of my class even though I battled disease all throughout college. I am especially proud of this triumph but each smaller, daily victory over my disease is what fueled it.

Throughout college, I have mentored peers with new diagnoses of inflammatory bowel disease and my advice to each depends on his or her mindset. However, one piece of advice stays constant: try not to let the disease change who you are. If you are an ambitious, hardworking student, you can continue to set goals and reach dreams even with the disease. While your goals might need to be revised along your journey, living well and happily with inflammatory bowel disease is a skill I believe all people with IBD can master in a way that is right for them. There is no universal definition for what “living well with IBD” means but individuals can adjust their own lives to work in a positive way. Additionally, I always approach mentoring with a smile, a laugh, and a very positive attitude.  The phrase “if you don’t laugh, you will cry, so you might as well laugh” has become a mantra of mine. Laughing is such a healthy way to deal with stressors and disease so I try to use it to its fullest potential.

Personally, to live a healthy lifestyle I laugh often, practice yoga, and surround myself with positive, helpful, and caring family and friends. As I mentioned, laughter is a central focus in my fight against IBD. I believe that it completely uplifts my spirits, helps me cope and continue towards my goals, and helps me help others. Practicing yoga became an important part of my life after my first surgery. After being bedridden for months, I looked to yoga to provide me with mental and physical strength that would not harm the new, twelve-inch scar stretching across my stomach. I started with chair yoga and slowly progressed to appreciate many types of yoga. Practicing yoga adds strength of mind and body to my self-care routine. Lastly, my support group of close friends and family has been essential to my healthy living. Together, they give me a space to complain, to love, to reminisce, to enjoy life, and to laugh.

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