Our little Crohnie is just 12 years old. She started showing severe symptoms as a baby at just 6 months, and had a permanent feeding tube inserted in her stomach by the time she was 15 months old. Finally, after years of tests and colonoscopies, Kylie was officially diagnosed with Crohn’s Disease. Although her feeding tube was eventually removed, doctors were quite hesitant to make this official diagnoses because her symptoms started at such a young age and didn’t necessarily align with what they understood about Crohn’s at the time. Either way, Kylie doesn’t remember a time “Before Crohn’s.” In some ways, I think that may be helpful, in other ways, it is not so great. She has always felt different. She has never understood why everything seems to come so easy for her siblings, while Kylie often struggles just to get out of bed. There are times when Kylie feels remarkably healthy and can even win sprinting races against all the boys in her class, just to realize she feels as though she can’t even function the next day. Despite her frustrations, her spirit and positivity are beyond inspiring. She fights. She remains hopeful. Yet she hurts in silence. She worries about her future, getting married, having children and so many things that are out of her control. She has been too young to understand what is happening to her. As family members of this amazing young lady who has struggled to deal with this tremendous disease her entire life, it is hard not to feel like we are just standing by and watching helplessly.
Because Kylie is so young and may not be able to fully express what she is experiencing or what she needs, we want to help. Emotionally, nutritionally, physically, and socially, we will never understand what someone actually living with this disease needs. I will never forget when we learned how Kylie, when in excruciating pain at school during a flare-up, would quietly push her stomach into her desk to try to gain some relief from her extreme discomfort. We were shocked. We had no clue how much she had been suffering because, perhaps, she had been dealing with it for so long she was used to it and kept her feelings to herself.
Our hope with this website and forum is to share…. well anything and everything… about the tools you think may help someone suffering from Crohn’s, or their loved ones, handle this overwhelming lifelong disease. Watching a parent numbly and terrifyingly shove a feeding tube down their infant’s throat because their child can’t tolerate food, or open yet another medical bill while trying to cope with this disease, is just as important to discuss and we want to talk about it.
However, dealing with food and Crohn’s is such a huge part of everyday life. This is our particular focus. If there is a food or diet plan that you have found that works for you, please share it! If there are foods that you feel you must avoid, please let us know! It’s not about telling people what is right or what is wrong, but to have an open discussion. Our hope is that together, we can help those just diagnosed, or those that have dealt with Crohn’s for decades, learn from one another and figure out as much as we can about this disease.
Love you Ky Bug. xo
* PLEASE NOTE: THIS IS MERELY AN OPINION BLOG. THE RESEARCH AND INFORMATION COVERED IN THIS BLOG IS OPEN TO PUBLIC DOMAIN FOR DISCUSSION. WE DO NOT HAVE ANY FORMAL MEDICAL BACKGROUND. WE SIMPLY WANT TO SHARE AND DISCUSS FOODS FOR THOSE WITH CROHN’S DISEASE. BECAUSE PEOPLE SUFFERING FROM CROHN’S DISEASE TOLERATE A VARIETY OF FOODS DIFFERENTLY, RECIPES OFTEN NEED SPECIFIC ALTERATIONS FOR EACH INDIVIDUAL. GET CREATIVE! LEAVE OUT THE FOODS THAT DON’T WORK FOR YOU AND USE THE FOODS THAT MAKE YOU FEEL GOOD. HAPPY COOKING!!