Hannah's Story
Hannah, Age 9

My daughter's name is Hannah. Hannah is an amazing girl, age 9, who was diagnosed with Crohn's disease in March of 2004 following two months of blood labs, upper GI's with small bowel follow-through, and finally colonoscopy/endoscope. In a thorough review of her medical records, her Crohn's doc discovered that she had basically stopped growing at the age of 6. In the two months prior to her diagnosis she lost over 6 pounds (which is a lot for someone who weighs only 45 pounds!).

Hannah's initial treatments included Prednisone and a variety of immunosuppressant. In July, she experienced a rare and severe reaction to azathioprine - her body entered a mock-leukemic state and was not producing any red blood cells. She had to have a blood transfusion, and of course, was taken off of all of her meds, except for a steroid.

After a time, her doctor suggested a trial of Remicade. She responded positively to the Remicade, in terms of sedimentation rate (it dropped to under 20 for the first time since her diagnosis). She has now had three IV treatments of Remicade. Unfortunately, since beginning the Remicade, she has been having mild to moderate upper respiratory symptoms and has had two sinus infections which have not responded very well to antibiotic therapy. In addition, she does not appear to be healthy. She looks run-down and is unusually tired most of the time. She bruises easily and cries easily (which is always our first clue that she is not feeling well).

We have been fortunate, in that Hannah has not had fistulas or had to have any surgeries at this point. As more information is released regarding the possible side effects (including some that are fatal) of Remicade, we are considering stopping that therapy. This is very intimidating, as there are not too many remaining conventional medical treatment options for Hannah.

At the time of Hannah's diagnosis, I spent hours and hours reading about Crohn's and within a month put her on a supplement regimen that seems to help minimize the symptoms. This regimen includes Omega 6 oil capsules, morning and evening, L-glutamine, multi-enzymes, probiotics, vitamin C, and a multi-vitamin. We use vitamins and supplements from a company that manufactures hypoallergenic supplements.

Hannah's medical doctor has been very supportive of our use of supplements. In fact, he was quite intrigued by Hannah's testimonial from this summer. Following her severe reaction to the azathioprine, all of her meds and supplements were discontinued for two weeks. She did, however, take a steroid during this time. Entocort (budesinide)is absorbed only by the large intestine, so has fewer systemic side effects than Prednisone - which was a relief for Hannah as she did not appreciate what the Prednisone did to her body or her moods. Within just a few days of stopping the supplements, she began to experience bleeding with each bowel movement. After two weeks, we resumed the supplements - again, within two days, the bleeding stopped.

Because of our concerns over the long-term use of Remicade and other immunosuppressants, our entire family recently changed our diet to one that is more whole-foods based and uses as much organic produce and meat as possible. This also seems to be making a difference in how Hannah feels. We recently met a chiropractor who also has Crohn's disease, but has been symptom free for 18 years! He attributes it to chiropractic, lifestyle (i.e., diet) and supplements. We are meeting with him this next week to learn more specifics about how he stays healthy.

Hannah is an intelligent and active child. She recently began public school (we home schooled for her first four years of school) and loves it. She dances, plays the piano, and is active in our local church. She absolutely loves life - and despite regular bouts of abdominal pain and frequent/painful bowel movements she persists in her activities. She is an inspiration to our entire family, as well as to our friends and everyone else who meets her.

One of our goals this year is to attend a camp held by the Crohn's and Colitis Foundation of America and to become involved with the organization. Like so many childhood diseases, IBD is increasing. There are some well-founded theories that IBD, while genetically linked, is also connected to our lifestyle (it is seen mostly in well-developed countries). More research needs to be done in determining what causes it, and more importantly, what can prevent and cure it.

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