My Crohn's Story

I was diagnosed with Crohn's Disease at the age of 13, back in 1993.  I was sent from a doctor's office immediately to the hospital, where I received back-to-back blood transfusions due to an alarming hemoglobin level of 4.  My pediatrician recommended one of the best gastroenterologists in the field, who is still my GI doctor to this day! 

With the care of a team of great physicians, I got back on my feet after a several day hospital stay, a course of Prednisone and being put on Asacol and Rowasa.  I'll never forget meeting with a nutritionist who was in her mid-20's and had Crohn's herself - identifying with someone who seemed to have it all together - a beautiful young woman inside and out - gave me a glimpse of hope that I too could grow up one day with a "normal" life.  Flash forward to memories of sitting at favorite restaurants, but not being able to enjoy my favorite foods.  My family was my rock throughout those tough initial months, always encouraging me, always supporting me in every step of the way.  They are the ones I credit with including vitamins/supplements in my path to recovery.  I started taking probiotics, pantothenic acid, a strong multivitamin, Vitamin C and a range of other supplements, including Flaxseed Oil, at a time when natural remedies had not reached the every day place it has in today's society.

The following year in 1994, I suffered a bad bout with stomach ulcers, landing me back in the hospital for a month.  I couldn't even walk when I left, my muscles had atrophied so much and my weight had dropped so low.  After finally getting back to feeling better, over the next year or two, I regained my health, followed by an incredible growth spurt!  I went from being the second shortest girl in my junior high class to one of the tallest, at 5'10".  I credit this to the Crohn's/ulcers having delayed my growth due to being so malnourished and ill.

I managed my health well during college, surprisingly so, given the all-nighters, and not taking the best care of my body as most college students seem to have a sense of invincibility.  Grad school followed college, and again although balancing work/life/school was a challenge, I did well.  I continued to stay on Asacol, Rowasa, and a range of supplements.  See my Healthy Living page for what I currently take.

While I only had a couple of flares in my twenties, now that I am in early-to-mid thirties, ever since 2008 I have been having a flare-up every two years, almost like clock-work, and always in late fall/early winter.  I've been switched to Lialda instead of Asacol, and am still taking Rowasa.  I take Prednisone to get me out of my flares, usually after rounds of Cipro and Flagyl have failed.  Most recently, I got sick a couple with a flare that crept up on me a couple of days after getting back from China, likely having picked up a virus or bacteria there.

Because of this increasing incidence of flares, I've decided to make it my daily project to get myself back into the healthiest version of myself possible, with God and my faith as my guide and reassurance.  My loving husband, family and friends keep me going when times get tough, and it is for them I keep trying!  My current course of exploration includes:

  • * Getting food allergy testing.  I discovered I have allergies to legumes, including soy, lentils, beans, peanuts, as well as almonds and a couple other randoms.  I have almost every environmental allergy there is!  You should have seen my arm after the skin test - swelling almost immediately to all the scratch tests, turning red, blistering and begging for relief!  The allergist started me on Nasonex at night.  I have been avoiding the food allergens, along with dairy (which I am intolerant too, excepting goat's and sheep's cheese and yogurt), for about 6 weeks now.  I also am testing a gluten-free diet, based on the research I've done on the SCD and similar diets, Yeast Connection diet, and the like.  I am off the steroids, and doing well.  Although balancing a diet that is very demanding is a daily challenge, particularly while traveling.  
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  • * Changing oral contraceptives to the mini-pill, after discovering the estrogen in combined pills is detrimental. 
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  • * Reading everything I can put my hands on that may help!  I try to pull bits from various theories, and craft my own path to recovery. 

  • *Staying healthy in other ways, including now that I have my energy back, getting back into my regular routine at the gym, as well as at least one yoga class per week.
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I started this blog because I found blogs and websites to be so helpful during those tough weeks and months.  I hope this story brings inspiration and helps guide readers to develop their own path to recovery.  Remember that everyone has their own challenges, and while Crohn's / IBD may seem like the worst card to be dealt, so many have their own daily challenges.

I say we all help each other, and form a community of healing!  Post and let me know your thoughts!


Comments

  1. Thanks a big help and giving your input to help others is fantastic. Good luck , all the best. Pat

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