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Thu, October 12, 2017 9:56 AM

This is my first time reaching out to others with my disease. I began having symptoms of chrons when I was 17 and was diagnosed with chrons when I was 19. My weight was always over 120 pounds. When chrons hit me I lost 12 pounds in two weeks and my weight has been all over the place since. I am currently 96 pounds and unable to eat or stomach food. I'm having a very hard time getting help from doctors and was hoping some of you will share what your doctors have done for you as far as medications go to help your appetite and help you get lost nutrients your missing out on due to chrons. Thank you in advance for sharing. I'm desperate, I'm weak, I need help. 

FPO Kissierox
Joined Oct 12, 2017

Thu, October 19, 2017 5:05 PM

Reply posted for Kissierox.

Hi. I can totally emphasize with you. I have had Crohns for 44 years. The only thing that has worked for me as far as being malnourished is a product called Kyani. It is a triangle of supplements that you take daily.  It has helped my appetite and sleep as well as being alert and focused.  Ask your doctor about it. If you like, you can contact me at

FPO Ellen Bridgewat
Joined Oct 19, 2017

Fri, October 13, 2017 10:03 AM

Reply posted for Kissierox.

Hi Kissierox,
Sorry to read about the challenges you are having with your health.   If your disease is active and your IBD medication is not working let your doctor know and ask him/her to review your current treatment.    If you feel your health care provider is not listening to your concerns and you have the ability to get a consultation, it might be helpful to see another doctor.    Each patient’s  disease is different so what medication, diet and other treatment that works for one person may not work for someone else.   
To learn more about IBD medication options review the resources below:
The IBD Medication Guide is a searchable e-tool where patients can enter their medication for more information on indication, use, risks, and side effects. They can also search for IBD medications by class. This e-tool includes short video animations that help explain how medications function to treat symptoms and inflammation, and link to our other helpful resources such as our factsheet and medication brochure. A demonstration video is also included to help patients understand how they can use the tool. Additionally, there is general information about IBD medications on the Foundation website:
You may want to seek help from a dietitian.  You can ask your gastroenterologist for a recommendation.  If you do not have a trusted resource for a referral, visit the Academy of Nutrition and Dietetics website, which allows registered dietitians to post their names and area of expertise. The key to remember when locating a dietitian in your area is to click on “Digestive Disorders” in the “Area of Expertise” category. 
In addition, the study “Dietary Patterns and Self-Reported Associations of Diet with Symptoms of Inflammatory Bowel Disease”, completed by Cohen et al. (2012) as part of our CCFA Partners research initiative, yogurt, rice, and bananas were more frequently reported to improve symptoms whereas non-leafy vegetables, spicy foods, fruit, nuts, leafy vegetables, fried foods, milk, red meat, soda, popcorn, dairy, alcohol, high-fiber foods, corn, fatty foods, seeds, coffee, and beans were more frequently reported to worsen symptoms.
For more information on diet and nutrition, the following links provide basic dietary guidelines review our brochure on Diet, Nutrition & Inflammatory Bowel Disease – Brochure
If, you have further questions or concerns, please email or call our toll-free number at 1.888.MY.GUT.PAIN (1.888.694.8872), Monday through Friday 9am-5pm EST to speak with an information specialist.

FPO administrator
Joined Oct 12, 2017

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