Friday, September 18, 2009

A little bit about my journey so far....

Well, since this is the beginning of my blog- There is probably some info as to how I got here.

I've have had Crohn's Disease since I was a child. Unfortunately, even less was known about Crohn's at the time- The doctors never thought to check. In 1990 I had to have emergency surgery to remove my appendix. The doctors thought for years this was the underlying issue. In reality, it turns out the Crohn's destroyed my appendix. I am fine until 1996, when doing a 1.5 mos trip in Israel I get very sick. I can not keep any food down, I have no appetite, and I lose 20lbs. Was seen my doctor, and given antibiotics. It turns out this was my first MAJOR Crohn's Disease flare up. (flare up is when the Crohn's Disease goes into hyper-active mode and is more aggressive for a period of time). I was virtually symptomless until May 1999. I literally woke up one day, and was exhausted. This continued for days, with the addition of a horrible stomach pain. My doctor sent me for tests. Finally, they found the answer- Crohn's Disease. After YEARS of always being sick, and some doctors telling my parents and myself that it was all in my head. FINALLY a diagnosis.

After my general physician diagnosed me, I was sent to a GI doctor. They immediately sent me to the hospital to lance an abscesses I didn't even know I had (more on that later). After recovering from what would be ONE out of over FIFTEEN abscesses, they started me on steroids and a medicine called Pentasa/Asacol. Very standard start of treatment for Crohn's. I was non-responsive, and the disease continued to spread. They added 6MP, a chemotherapy pill that I had to take every day. This brought about 3-4hrs of puking every morning...GOOD TIMES! After the 6mp they tried Methotrexate....another chemo this time injected subcu in my stomach. After Methotrexate, I was enrolled in the clinical studies for Remicade. (this was 2000). Remicade was amazing...but unfortunately the more I received it my body built up a tolerance. In June of 2000 I had my first major surgery- a bowel resection. Something my GI doctor did not want me to have. With the pain I was having, I knew SOMETHING was wrong. With the guidance of my parents and the surgeon, I proceeded. The surgery saved my life. The damage the surgeon found was enough to cause a bowel perforation. I was a walking time bomb. After coming out of the haze and recovery, I fired my GI doc who tried to talk me out of the surgery. They had to remove a total of 15" of my small intestines including my ilium and cecum. Also removed was 3" of my colon; I was fortunate to never have any bags installed.

After my resection I felt INCREDIBLE. For the FIRST time in my life, I truly knew what being "healthy" felt like. I had energy, no pain, I could depend on my body. Absolutely amazing!!!
This lasted a year. After my bowel resection they put me back on Remicade, with the hope the disease was weakened enough for it to work again- not the case. Out of frustration of nothing working, and being admitted to the Hospital upwards of 8 times a year for flare ups and abscesses I traveled to the Mayo Clinic in Rochester, MN ( about 11 hr drive from Cincinnati, where I live) At the Mayo Clinic they are AMAZING!!! They have an actual Crohn's Disease clinic, and some of the best doctors in the world. Following their advice, they wanted me to start the medicine Humira. PERFECT...WONDERFUL! Finally something new.... I go to get the Humira prescription filled and find out my insurance company won't cover it AT ALL because the FDA has only approved it for Rheumatoid Arthritis, and NOT Crohn's Disease. They start pain management on me, and wait for Humira to be approved THREE YEARS LATER in late 2006: The FDA approves Humira for Crohn's Disease. I contact the Mayo Clinic and since so much time had passed, I had to travel BACK to Rochester for evaluation. This time my father travels with me, and everything goes wonderful. Unfortunately I had to fight with my insurance company to get the Humira approved. The loading dose alone was over TEN THOUSAND DOLLARS. I was extremely fortunate (after weeks of research) to get it worked out to where I am blessed to pay nothing. I have been unable to work since 2004, so I depend on Social Security and an INCREDIBLE one of a kind father; he is truly a hero and I wouldn't want anyone else for a dad. I am very fortunate to have him in my life. Since I live 11hr car drive from The Mayo Clinic it was decided a doctor in Cincinnati would work with The Mayo Clinic in my treatment. After searching and searching for a doctor that was willing to work with The Mayo Clinic docs, I found an amazing doctor. With her help, I started Humira on May 28th, 2009.

Humira has been both a blessing...and a curse. It is a very powerful medication, that I am receiving at an aggressive dosage. The loading dose was 3x the normal dosage, 2nd 2x as strong, and then the last normal dosage; which is 40mgs every other week. The Humira comes in a pre-loaded pen, that I have to inject into my stomach. It couldn't be easier!! The Remicade had to be done through IV Infusion which took over 3hrs every 6 weeks. The first month goes wonderfully! By the end of the mos my symptoms were ACTUALLY decreasing! A reprieve finally....Feeling decent, I embrace this and wind up developing a staph infection. Pulled off the Humira for one month, to let my body properly heal with antibiotics. During this time I also became dehydrated and had what is called a hyper-cardiac reaction. My heart was beating very fast, whilst my pulse was very weak. After a night in the ER and lots of hydration, this was totally taken care of. I go back on the Humira for a month, and develop a sinus infection. 5 days of antibiotics and I have to skip another week of Humira. I was supposed to inject the Humira yesterday 9/17/09, but have to wait until 9/25/09. *Addition* looking back I developed all these infections because I had untreated (unknown) Hepatitis B, along with a cirrhosis off the about 20/20 hindsight!

OKAY! WOW that was a lot... I will continue to share my story, and fill in pieces as the blog grows. I just want to spread awareness for Crohn's to help find a cure. If anyone ever has ANY questions, I am not ashamed or embarrassed to discuss anything. Please feel free to comment or ask anything. Will continue to update later, and eventually get to a daily "live" journal of my journey.

To ANYONE who takes the time to read this, I truly am grateful.



  1. Its really great that you are able to open up about your disease and both it's positive and negative affects on your mental and emotional health. Maybe you can also mention your diet. Some people don't realize how it has kept you from enjoying some of the simplest of foods.
    What are you doing (besides medicating)to keep your Crohn's disease at bay? What do you do in case of a flare up? This is the beginning of a really great insiders view of a very complicated diagnosis. Offering as much info as you can will shed light and awareness and maybe even save a life:)

  2. That is a brilliant idea! I will absolutely add diet, and what I do during a flare up. I really appreciate the advice! :)

  3. True, diet plays a big part in how we live. Keep it up and maybe you will learn to like writing better than Reality TV LOL

  4. HAHA If I can find something I enjoy better than Reality TV I would be a happy happy man! :) Thanks for taking the time to read, and offer advice and support.

  5. I hope people read this entry especially who might be experiencing similar symptoms while their doctor say there is nothing wrong. I don't know why doctors think everyone is just pretending to be miserable just to see them, or why insurance companies like to make people wait for important treatments, but the more people speak up about it the sooner things will change, hopefully.

  6. Black: I couldn't agree more! If I can help spread awareness and help people I would be so extremely happy! No one should have to deal alone. Being able to relate to someone else is an incredible connection. Thanks again for taking the time, and to comment (AND FOLLOW!) you're a rockstar!

  7. My fiance and I live in Cincinnati and she was diagnosed with Crohn's in 2004. Currently her GI doctor is in Dayton but we are going to start looking for a new GI doctor in Cincinnati. Can anybody recommend the BEST GI doctor with a preference of Northern Cincinnati?

    Also if anybody needs surgery, we definitely recommend Dr. Gennaro Labella, MD. He is very good at describing and making sure you understand everything. Make his patients feel comfortable and is very funny. She just recently had to have a fistual repaired with surgery and she loves him as her surgical doctor.

    This has been a very frustrating and bumpy road; I can only imagine what you people with the Crohn's go through everyday.