Share your experience

My daughter was first diagnosed with Crohn's disease November 2003.  I had never heard of the diseased prior to her diagnosis.  Since that discovery, I’ve numerous hours researching the disease and the various treatment options available for treating and managing the disease.  

I’m currently enrolled in a MS degree in Health Informatics at the University of Missouri, and I need to write a thesis.  For my thesis, I have written a survey specifically designed for patient's suffering from Crohn's disease.  The survey is intended to collect data about the treatment methods used by patients, your knowledge of the treatment options available for treating/managing the disease, and the primary sources of information you used for educating yourself about the disease and it’s treatment options. 

I would greatly appreciate if you could take a few moments to fill out the survey.  Your personal experience is very important and I would like to hear about it.  The survey form is fully encrypted, contains no personally identifiable information, and has been approved by the University of Missouri IRB.  Parents of children diagnosed with the disease can fill out the survey on behalf of their child.  I will make my thesis available once I’ve completed it, which I’m projecting to be somewhere in the October-November time frame.

I have received permission from Peter Waite of Helling Well to post this survey.  Thanks in advance for your support.

The URL for the survey is:

https://www.surveymonkey.com/s.aspx?sm=dDs03O00OPwgncarZi41bg_3d_3d

Thanks in advance for your support,

Linda 

A form of nutrition that is delivered into the digestive system as a liquid. Drinking nutrition beverages or formulas and tubefeeding are forms of enteral nutrition. People who are unable to meet their needs with food and beverages alone, and who do not have vomiting or uncontrollable diarrhea may be given tubefeedings. Tubefeeding can be used to add to what a person is able to eat or can be the only source of nutrition. A small feeding tube may be placed through the nose into the stomach or the small intestine, or it may be surgically placed into the stomach or the intestinal tract through an opening made on the outside of the abdomen, depending on how long it will be used.

Some places that I googled limited it to nutritional support administered through tubes.  Clinical trials have shown that drinking the formulas has the same results as tube feeding.  Because of the volume of formula required to sustain good health and enter a state of remission (about 10 cans) is difficult for the patient to ingest during the day, so they opt for administering a good portion of it via a Nasal Gastro (NG) tube at night. 

It is a difficult treatment plan to adhere to because optimum results require a minimum of 4 weeks of enteral nutrition and sometimes longer.  When all said and done, my daughter was on it for almost 8 weeks.  She was able to achieve a state of remission without using drugs, which was our goal because we wanted her to catch up on some of the growth loss she experienced because of the nutritional deficiencies that accompany this disease.  We were fortunate to have caught the disease early and were afforded the opportunity to play catch up.  That was two years ago this Thanksgiving.