She was originally diagnosed with ulcerative colitis when she was about 14. As any of us with this terrible disease knows, we are running to the toilet many times a day at random times. You can imagine how difficult this must be especially to anyone of high school age, as so many of our members recall. Most of us are the most private about our bodily functions at this age, and anyone with UC risks embarrassment and ridicule from one's high school classmates because of this urgent toilet thing and the inevitable "accident".
In addition to the stigma of living with uc, servicing the disease itself puts a difficult burden on the best of us. People with severe UC usually have hospital stays due to the complications of the disease and well as receiving life saving treatments. This is, of course, the most difficult for a teenager who wants to be out having fun at school and with her friends. It takes a great courage not to give in to this disease by falling into despair and making oneself an invalid. Then news that is more terrible came. Julielyn did not have UC but Crohn's disease of the large intestine. This required her and her doctors to make difficult decisions regarding treatment options. Should she stay taking massive doses of medications living in hospitals or in bed at home unable to leave for long and abandoning much hope of living a normal life? On the other hand, should she risk ostomy surgery to try to obtain some degree of cure for the Crohn's disease?
Julielyn made the choice to have ostomy surgery. Because of the extensive inflammation in her large intestine, her physicians chose to remove the entire colon leaving her with a permanent ileostomy. That was in 2000. This decision was not made in haste. You see, she had been in the hospital about 70 times and had dozens of surgeries up to this point. She was being whittled away by the disease and by the treatments.
The details of her high school years read like so many others that have experienced the severe trials of such debilitating diseases. One cannot have much of a social life and one cannot ever go to school regularly - how do you sit in school when you may have to get up at any moment to run to the toilet? In addition, one's family suffers terribly watching a loved one unable to function normally with repeated hospital stays. We have seen this all before and the detail of the trials a family goes through is all too familiar to us.
Now for the good news, Julielyn is now doing just fine. Like so many of us, when she came out of the hospital after ostomy surgery, she felt healthy. That is, healthy for the first time in many years. The disease was not gone, but ostomy surgery put it in remission, a remission that has lasted six years. It is common for people with large intestine Crohn's disease to obtain a sustained remission when the colon is removed. Because of this phenomenon, in some countries large intestine Crohn's patients are given the option of a j-pouch - an option we in American have not embraced due to the severe complications of this surgery if Crohn's disease ever does reappear.
We have read the Lansing article discussing Julielyn' s remarkable recovery and are so glad the media has recognized this often unreported disease. However, the article does still disparage ostomy surgery as a last resort that permanently disfigures a person. The slant of the article infers that after ostomy surgery we could not possibly be physically desirable again. We do not agree. Ostomy surgery does not only give back one's life and lets one live a healthy, happy life . . . it makes one beautiful again. Healthy is always more attractive than sickly. A little red rose on one's tummy does not limit one's life or one's attractiveness . . . it enhances it.
Julielyn is not depressed because of her ostomy she embraces it. The little red rose on her tummy does not stop her from any of the activities she chooses to involve herself, including an active social and dating life. (She was considering marrying a man she had been dating for a while, but decided against it when she did not want to settle for a man other than one she truly loved. People with ostomies do not have to settle.) This August, she will ride in the annual CCFA fundraiser, "Get You Guts in Gear". This is a 210 mile, three-day event, which she has received pledges of over $10,000 to help fund research for a cure to IBD. She wants to bring attention to a life saving procedure - ostomy surgery, which people generally do not like to talk about but which Julielyn is a walking billboard.
