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infoarch2
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 9/20/2008 4:02 PM (GMT -7)   

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 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/20/2008 5:22 PM (GMT -7)   
Linda, you may have permission to post the survey, but you do not have permission to post it multiple times in multiple threads.

You are welcome to participate in our discussions, but please review the forum rules: no duplicate posts.

Ivy.
Co-Moderator Crohn's Forum.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/20/2008 5:29 PM (GMT -7)   
ps. That's *six* duplicate postings I've deleted so far...
Co-Moderator Crohn's Forum.


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 9/20/2008 5:31 PM (GMT -7)   
i completed the survey for you linda. however i left the portion about enteral nutrition blank cos i never did that. best of luck to you! a masters thesis is rough, and i know cos i did mine in environmental & chemical engineering. just pray that your adviser actually reads your draft submittals in a timely matter and then does not decide to go on vacation or become the dean of the college....
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/20/2008 5:51 PM (GMT -7)   
I also responded and I took part in the enteral therapy section but I only answered the questions that applied. I did not have a specific forumula but rather did my own liquid diet. I could not remember if it was initially prescribed or self induced. I know I just do it on my own now a lot.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


savkelchr
Regular Member


Date Joined Sep 2008
Total Posts : 33
   Posted 9/20/2008 9:23 PM (GMT -7)   
I too took the survey but had to leave the portion of enteral therapy blank as Ive never done it before. What is enteral therapy if I may ask? Is it the TPN where you have feeding tubes?

infoarch2
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 11/2/2008 10:58 AM (GMT -7)   
Here's the definition according to National Cancer Institute:
 
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.   
 

infoarch2
New Member


Date Joined Sep 2008
Total Posts : 19
   Posted 11/2/2008 11:02 AM (GMT -7)   
I apologize for my oversight.  I did read the forum rules but did not see this - I must not have read it closely enough. 
ivy6 said...
Linda, you may have permission to post the survey, but you do not have permission to post it multiple times in multiple threads.

You are welcome to participate in our discussions, but please review the forum rules: no duplicate posts.

Ivy.

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