Independence

In honor of independence day, I'm going to take a few minutes to share how my life changed when I was diagnosed with Crohn's and became dependent in many ways on all of those around me...and how research and the concerted efforts of my healthcare team - Dr. Johnson and his nurse (then Stacy and now Kim) and all of the staff at the Bozeman GI Clinic - helped me to get my freedom back.

Crohns and Colitis are painful, debilitating diseases. After the birth of my daughter in 1994, I began having abdominal pain which intensified over a period of about a year until it was severe enough that it literally brought me to my knees. I would have these waves of agony after eating that would start high in my center and then roll down into my back. It would release for a minute, and then start over. Each time I felt sure that an alien was going to burst out of me, or that I would literally explode from the pressure. It got where I was afraid to eat. I lost a ton of weight and all my energy. I had a lot of blood in my stool...but I did NOT have the telltale diarrhea that accompanies most people who have IBD. This created a puzzle for physicians and it took nearly a year before the general practioner sent me to the GI clinic for a colonoscopy.

This period of time was extremely frustrating as I was told over and over again that it was depression. I kept saying, but I'm not depressed! I love my baby with my whole heart and enjoy her so much. She gave my life meaning on such a profound level that I was positive that my best days were in front of me. I couldn't wait to grow with her and enjoy all the gifts of being a mom. I had a really good job and was doing well with my career. I was positively not depressed! I was in real, physical agony!

I fell into a pattern where all I could do was go to work, come home and nurse my daughter and hold her and sleep. I was a slave to my pain. I tried really hard to get enough nutrition that I could give Jackie what she needed but that was all I could manage. After the colonoscopy and getting diagnosed, I was put on a ton of medicine and finally was able to get my life back a little bit. I still had fairly regular obstructions and NG tubes, and hospitalizations and absesses. And it was a life dependent on about 40 pills a day, lots of rest, and thinking constantly about what to do to not get sick again. When I was finally able to go about a year without any major setbacks, we decided to have another baby. I suffered a miscarriage and heartbreak, but we tried again.

When I got pregnant with my son in 1998 about 4 months after my miscarriage, I was so HAPPY! But my Crohn's came back with a vengeance and I was sick through his entire gestation. He was born a little prematurely and had some stomach issues of his own. I had to quit work to keep him safe. I was lucky enough to find a job on the internet that allowed my family to survive financially. It was a God-send also for my psyche as I felt like I could contribute something. Still, for that first year I barely could get out of bed. I nursed, Dylan threw up, I nursed again, he threw up... when he slept I lay in bed with the laptop and tried my best to get in as many hours as I could and then I'd sleep and nurse and clean up vomit. I was so weak and sore. WHen Dylan was 11 months old, I had a major bout again and ended up in the hospital. Fortunately, Dylan came around about the same time and at least I was able to stop worrying so much about him.

After about a year of hospitalizations and obstructions and complications things hit bottom when my bowel perforated and I ended up in emergency surgery. My doctors did a fabulous job...believe me before I got to the hospital, I honestly didn't think I was going to survive. That may sound dramatic and outrageous, but it's not exagerated...the pain was unbelievable. I was incredibly weak. I was barely even conscious I hurt so much. WHen the docs said they needed to do surgery, and I may need a colostomy, all I could mutter was I don't care if you have to cut of my arm...make it better. Even after surgery (I did not need a colostomy but had two resecctions done at the same time), it was a solid year before I had any real freedom...before i could go places and do things that normal people do.

A trip to Seattle and specialists at the University of WA confirmed that my doctor had done everything right on. I visited with a naturopathic doctor at the Bastyr clinic there and got some additional hints at how to really get overall better. My OBGYN helped me with some medication for depression, because by this time I was depressed. I was so tired of being so sick for so long. I was tired of not being able to run and play with my kids. I was tired of working in my house and never seeing people. I was tired of having my dreams on hold. I felt like I was living in a prison, sentenced to a life of feeling crappy and not being able to be the mom, or the wife, or the employee or the citizen that I always believed I would be.

ALL the of the people who helped me climb out of this place will always be angels to me. With the help for my depression, I finally saw the light. I commited myself to exercising and getting outside and importantly, REMICADE came along. It was a turning point. It was the difference in moving out of sickness and into wellness. After about a year I got off the depression meds and prednisone and the like and was able to go to infusions every 8 weeks, and prevacid and 6mp. I was able to run the SweetPea 5K, something I 've vowed to do EVERY single year as a reminder to me that EVERY day is a gift and that there is NO guarantee that there won't come a day when I can't run or play again; when I will lose my freedom again to this disease...just like my brother has the last couple of years. Just like my son has the last two years when he couldn't wrestle because it hurt to eat and he was so tired and fatigued.

THis is why I appreciate all of you have donated to this cause. WE need a cure. WE need to free everyone who suffers and give them their lives back. Thank you for helping me and everyone with this effort. IF you can, stop by my page and pledge another $1 per mile... It will go to a good cause. It will make a difference!!! You can make a difference. Happy Independence Day!!!

(Oh, and don't worry, I am well aware that this holiday is really to celebrate our veterans who have made America so great. I am absolutely honored to be American and grateful to the very core of my being for the sacrifices made by generations of soldiers and their families, and by civilians who go about their business every day - making life better for people around the world and making our country one that stands for values and integrity and liberty and justice for all. Thank God for America and God Bless us all!)

Thank you!!
jd