Our Crohn's Journey

Throughout my childhood I had numerous occasions of vomiting and bowel discomfort, but my family never paid much attention to it.  I would get what we called stomach bugs as frequently as once a month.  I would vomit and be extremely sick for days, and get over it.  I never completely got over the fatigue part though.  In 2006, I had a horrible case of a virus and was hospitalized, but I pulled through again and continued with life.  I started nursing school in 2010, and always had this feeling of sickness, like something was going on with my body but I couldn't put my finger on it.  During the summer of 2011, I was hospitalized again with a huge mass in my small intestine, that was diagnosed as Non-Hodgkins Lymphoma, but after surgery and a biopsy the mass was not cancerous, and was just the inflammation of my small bowel.  At this point, my doctors were not thinking Crohn's disease, but my family and I were.  So we went for a second opinion and miraculously I was diagnosed with Crohn's disease in late 2011.

Initially, I thought I did not need medication and that I could control my Crohn's with diet and exercise alone.  However, without anything to control the inflammation, I was only hurting myself more.  It was also expressed to me that Crohn's disease is very aggressive in African American women.  I was scared by the mention of immunomodulators, and quickly withdrew.  I came to my senses in a few months due to extreme abdominal pain and numerous trips to the ER.  My GI doctor recommended Imuran and Lialda, after researching them I chose not to use them.  Instead, he prescribed Pentasa, which I took for for a few months without relief .  At that point, we were in the process of changing to a different oral anti-inflammatory to see which medication would work best for me.

Having Crohn's disease has been a huge uphill battle, as I never knew what my day would bring and how I would feel.  MAny friends and family would invite me to functions, but I always had to turn them down due to my symptoms related to the disease.  It definitely placed distance between me and many of my friends and family, because no one really understood what having this disease meant or how much it affected me and my family.  After the birth of our son, I became very big on exercise, cleaning, and entertaining our son.  My favorite exercises are Zumba, and running! But up until July of 2013 my chances of participating in any of those activities were slim.  I found hope in knowing that at some point we would find a medication that responded effectively and positively to my inflammation and would ultimately make my feel better, enabling me to get back to working, and taking care of my family.

In May of 2013, we finally decided to try Remicade infusions, and it was the best decision we have EVER made pertaining to my Crohn's disease process!  It was a little rough starting out with body aches, nausea/vomiting, and fatigue after infusions, but my doctors were very attentive and prescribed the appropriate medications to combat those side effects.  Initially, I was on an every 8 week infusion schedule, and we noticed that by week 5-6 after my infusion, all of my original symptoms would return.  Ultimately, my infusion schedule was changed to every 4 weeks and that has been working perfectly for the past 4-5 months.  I have absolutely no complaints at this point as it pertains to Crohn's disease or Remicade.  I have been extremely healthy and symptom free for months now, and totally back to my old self!  If there is anything I would warn patients with Crohn's disease about, would be the price of Remicade.  The infusions are very expensive, and it can be inconvenient to have to travel to an infusion center in order to have it administered.  However, Remicade has become a very common medication these days so many infusion centers and GI doctor offices are equipped to administer it.  Also, Remicade has a discount program through its manufacturer Jansen called RemiStart.  This program requires an application to be completed by the patient and their GI doctor.  After approval, the patient receives a RemiStart card in the mail with instructions regarding its usage.  The instructions are simple:

  1. Submit your EOB (explanation of benefits) from your insurance company along with the corresponding invoice from the infusion facility.
  2. RemiStart will place the amount of the invoice minus $50 (as the program states that participants will only have to pay $50 for each infusion) on the RemiStart card that you were mailed.
  3. Pay your infusion invoice using your RemiStart card.
There is a maximum pay out amount for each year, and I think it is 8 infusions or $6,000.00.  Don't quote me, so please check out the website www.remistart.com.  I created this blog in order to share with others my experience with Crohn's, and hopefully be able to positively influence their journey through Crohn's disease.  I will update my progress via blogs on my home page.  I can't wait to hear from others...health and wealth to all :)