My Crohn's Story

Hello Everyone,

My decision to blog came with much thought and prayer and decided that this is something I should be doing for good reason. My goal is to share my story, get and receive advice and hopefully help others dealing with the same struggles when caring for a loved one with Crohn's Disease.

My story begins back in June, 2014 when my 6 year old daughter was in the hospital for a week and subsequently diagnosed with Crohn's disease. My first thought was "OH! That young?" However, I was a little relieved that it wasn't anything worse but knew the diagnosis was not optimal. My daughter had a battery of tests performed from ultrasounds to colonoscopy/endoscopy. Let me tell you, that I have never seen such a brave and strong 6 year old! Her resilience kept me strong! She did have her moments but was very brave through it all and is to this day. There is such a range of emotion that evolves when you have a sick child, don't know what is going on and feel helpless because you do not know how to help. There were many, many times that I just wanted to curl up and cry like a baby. However, I would never let her see that side of me. To top it all off, a month later, I was laid off of a job I held for over 8 years. What else could go wrong? Although, I would like to think of it as a blessing in disguise.

The doctor's reassured us that it is very treatable with lifelong medication and a healthy diet. After her diagnosis, she was put on Prednisone, Pentasa and Prilosec. The Prednisone is to control the inflammation already present; the Pentasa is to control any future flares; the Prilosec works in conjunction with the Prednisone so as not to cause any acid reflux. Since then, she has become dependent on the Prednisone as her symptoms returned when trying to wean her off of it. She developed a telescoping intestine (Intussusception) which became a need for a trip to the hospital. The condition corrected itself and she didn't need a procedure done. THAT was a big relief!

In order to completely wean her off of steroids, we had to think of other forms of medicinal therapy. Her GI doctor recommended starting her on Remicade. My feeling at first was a big fat NO WAY! Why would I want to subject my daughter to this knowing the risks? There are many risks associated with this biological therapy. Some very rare, others more along the lines of side effects. I battled internally with this for days and did ALOT of research and praying. We talked to her GI doctor about our concerns extensively at our recent appointment. He reassured us that all the risks involved were very minimal and feels that out of all our options, this is the best choice. Being on steroids for a long period of time is more harmful than Remicade. He said that we would be amazed at the difference in our daughter after even her first infusion. The benefits outweigh the risks involved. The ultimate goal for my daughter is to make her well, no pain and less dependent on medication. Remicade could very well be the light at the end of the tunnel that I have been looking for the last couple of months.

I just want my little girl to be "my little girl" again!

This is my first blog and as time goes on, I will add more to them. I would appreciate any and all stories, advice and wouldn't mind being the "shoulder" someone else needs. Below are some links to websites that I found useful and informative. Please let me know what you think and if you have any questions. I am more that happy to help! Until next time...Laugh and Love Life!

www.ccfa.org

www.gikids.org