My Story

Hi, I am Dani. I have many titles, Mommy, Wife, Daughter, Friend and Crohn’s Patient. I have listed them in order of importance.

I was diagnosed with Crohn’s disease about ten years ago. I had the disease for years before I sought treatment. I had a problem that was very specific to Crohn’s Disease. I had an abscess, which turned into a fistula. (A fistula is an abnormal tunnel that connects the bowel to another organ or the skin, which drains and gets infected frequently. That one fistula has since turned into seven.) So I got some health insurance, walked into my doctor’s office asking for a referral to a Gastroenterologist because I thought I had Crohn’s Disease. My doc literally laughed and asked why I thought so, I told him and he stopped laughing. Turns out, I was right. My diagnosis came much faster than my brothers and sisters of the bathroom.

Crohn’s Disease is an immune response that causes ulcerations in the digestive tract anywhere from the mouth to the anus. While the complications from Crohn’s disease can progress in severity, the case someone has (meaning the location(s) and span(s) of the ulcers themselves) is the case s/he has. The disease is smart though, if the portion of bowel that is affected is removed, the disease knows to come back to the same location where the new part of bowel has been reattached. In my case, the ulcerations are in my entire small bowel. I didn’t know this until two feet of my bowel had been removed. I got home from the hospital and had the exact same symptoms I had before the surgery, with the same intensity. About tweleve diarrhea bathroom visits a day, joint pain, fatigue, frequent accidents, and the fistulas. My doctor wanted to explore why I was still having problems, so he ordered a lot of tests. A capsule endoscopy (a horse pill with a camera in it) revealed the news that any more surgeries to my bowel would be useless. (Although I would endure many many more surgeries to manage the fistulas.) I would also not benefit from a colostomy or ileostomy, since no one can live without a small bowel. I would have to rely on drugs to manage my disease. The problem there is that I have been on all of them, and none of them have worked. I have also participated in four clinical trials, and I am batting zero there too. The only therapy that has helped me is something called Total Parenteral Nutrition (TPN.) It is where an IV is sewn into an artery and all nutrition and fluids are pumped into the circulatory system. This therapy can last for months, and during that time the patient is not allowed to eat or drink anything. It is as unpleasant as it sounds, and almost an unreasonable price to pay for a little relief. It does work, which is why I have done it twice.

Having an incurable disease is scary, what terrifies me more than anything is that I will not have the energy to be the mommy that my toddler son deserves. I fear that he will get the disease. Every time he has a bowel problem (which all babies have from time to time,) I become inconsolable. I don’t want my challenges to be passed down to my son. I want to live a long healthy life and see my grandchildren born one day. Being an old lady someday is hard to picture when my body takes such a beating everyday.

Aside from the need to be near a bathroom constantly, a big challenge of having this disease is getting people to understand that it is possible to be very sick and very happy at the same time. What choice do I have? If I put life off until I am better, I may not have any life at all. There is not a cure for my disease. I hope for one, but I can’t rely that it will happen in time for me.

April has told me a couple of times that she admires how I handle having Crohn’s. What I hope I have conveyed to her, is how much I admire how she handles having this disease. She has worked tirelessly to do what she can to help raise money for a cure. She is going as far as to run a half marathon for a cause that touches her deeply. She has made it clear that she isn’t just doing it for her. She is doing it for me, for my son and for every single other person living with this debilitating and isolating disease. April is one of my heroes, so please support her. Supporting her is supporting us all.

http://www.active.com/donate/kona11national/konaAMartin