Coping | IBD | Ostomy
Introduction:
My name is Charis Kirk. I’m 31 years old and I have a permanent ileostomy as a result of severe ulcerative colitis. I’m very straight-forward and I believe strongly in providing a realistic, yet optimistic, point of view on my IBD and ostomy experiences. So far I’ve had 8 surgeries in 2.5 years and countless ER visits and hospitalizations. I’ve been on almost every IBD medication out there. I know what it’s like to feel angry, desperate, lonely, and hopeless and it’s because of these emotions that I’m able to connect with all different kinds of people living and struggling with IBD or ostomies.
Adam: Why did you decide to start blogging about IBD?
Charis: I decided to start blogging about IBD and ostomies towards the end of 2011 because I felt disappointed that the websites, Facebook pages, and blogs I came across were primarily negative and seemed to encourage a depressed sense of one’s self and physical identity. I also felt frustrated that many of these same resources were being run by individuals motivated by self-promotion or who weren’t interested in interacting with page members, or the rest of the IBD and ostomy communities online. Because of my frustrations, I decided to create my own blog, Full Frontal Ostomy, as well as a Facebook page, My Doctor Knows Me Best From Behind: IBD and Ostomy Support. I use these sites to blog about my IBD and ostomy experiences and thoughts, and to also connect directly with others who are going through difficult times or who need reassurance.
Adam: What has been the best discovery you’ve made in the past year in terms of your disease?
Charis: Over the past year I’ve made many discoveries about my disease and my body. I’ve learned to NOT trust my disease or its manifestations, but to instead trust my body to tell me when something isn’t “right.” I’ve learned to recognize warning signs that prior to my diagnosis would’ve been written off or explained by diet changes or emotional distress. Most importantly, I’ve learned to trust my instincts and make wise decisions regarding my healthcare. I tried for two years to make my jpouch work but when I realized I was getting sicker and sicker, I chose to go back to a temporary ileostomy. I did that to save myself and to provide relief to my family and fiancé, whose lives revolved around my disease. I gave up my old identity and moved forward with a new one. I’m glad I did.
Adam: Besides your website, what else keeps you excited to wake up each morning?
Charis: Now I’m truly excited to wake up each day to see if I am still pain-free. I no longer take a single good day for granted because I know what it’s like to wake up day after day and see nothing but darkness and feel nothing but pain and despair. I appreciate things like feeling hungry or thirsty and being able to eat and drink what I want (for the most part – I’m still working on vegetables and fruits!). I appreciate not taking 20-30 pills a day. And I appreciate my body. I can at least look in the mirror now and not burst into tears about my scars, my bloat, or my ostomy bag. I can look at myself now and feel that I look pretty. I have self-confidence again. And that motivates me even further to help others reach the same conclusion about their own bodies.
nice story, you are so positive… i have had a bag for 13 years, would not give it up for nothing you can do anything you want….randy 209 214-3749
i just wanted to thank you for sharing your story. since i got sick the different youtubes sites and videos really made a big difference in my attitude and hope levels. i am now adjusting to the jpouch. so of course i have a million questions. i really appreciated your vids about working out and supplements. i am so happy to see sarah and you other ladies getting together and expanding the support network. i am now well enough to volunteer to make hospital visits to people going through the same surgeries. i will be sharing all the online resources that helped me and doing my best to encourage others to keep fighting. your examples helped me so much and let me beleive i could survive no matter what the surgical outcome and still be ok.
Thanks Randy! Being positive and having a healthy mindset are key to being happy and living a fulfilling, successful life. I’m glad we’re on the same page!
Leo – well, you’re in luck. I have a whole series of exercise videos on the way! 🙂 And I like your attitude that no matter the surgical outcome, you will be OKAY. That is essential to a speedy and steady recovery! ~Charis
Charis,Thank you for starting this. I got my 1st surgery in 2002 when they removed my colon and reattached my rectum to my sacrum from it prolapsing. I got much worse from there. As I always growing up had stomach aches and constipation my mother didn’t think there was something wrong just that I went to the bathroom 2x a week. Anyway from there I got way worse and ended up with obstructions (pseudo) and chronic fissures and just everything you get from an angry gut and intestines. By the time I was age 39 ( 1st surgery I was 29) after being told by several motility specialists and surgeons that I needed an illeostomy, I couldn’t take the way I was living, over 250 days in the hospital the year 2009, I said screw it I’m 89lbs they tell me I’m dying, against others judgements I did it. I got the ostomy and I was good with it. Then it started to malfunction and stop working and I gained weight and my gallbladder had to come out the next month and the following month I got a volvulous and they did emergency surgery on me. While in there I got MRSA, they treated me for 2 weeks with vancomyacin and then I was getting worse instead of better and my Mom made them re test me and they found in a culture I had a Vanco resistant e-coli. I spent 8 weeks in there that time. But now as of today I just came out from a week of resting the intestines because they were super swollen and stopped functioning. After that I was back in the ER for the ostomy stopping and it has been like this for 2 yrs now,I’m 41. Am I too old to belong because I totally don’t look or act my age!!!!! My name is Kerriann and I am waiting patiently for help. All the other sites I belong to are of I don’t know (don’t want to judge) but they just don’t do it for me. They never have. My mother found you guys, she’s my little investigator and she reads up on all new drugs and stuff that will help me. I have been so sick these past 3 weeks I can’t exercise and I’m freaking out!!!!!!!!!! I feel like so much was given and taken and I’m all confused! Can you help me get involved in this and get me out of my F@#KED up head-LOL. It would be greatly appreciated.
Thanks
Kerriann
I am 45 years old And had my first surgery March 3rd of 2016 After surviving an E.coli infection A stroke I’m still hanging in there Any recommendations And positive life stories very helpful Thank you very much