So its Crohns & Colitis Awareness Week (December 1-7). I was diagnosed with Crohns disease as a kid and spent years learning as much as I could about it, educating myself as much as possible before ever letting myself consider being an advocate for other patients. Over the past few years Ive dedicated my life to educating patients and the public about Crohns disease and ulcerative colitis along with providing validation and support to fellow patients. I only say what I am about to say because I am proud of myself and the endless hours I have put into what I do but; I have gained respect of top GI doctors and other medical professionals around the world. My videos and blogs are shared by the medical community and that makes me feel like I have done a good job. It makes me feel proud that the work I am doing is not only making a difference in the lives of patients, but that the information I share is supported by those medical professionals. I am off to Orlando in a few days to learn even more at the Advances in IBD Conference. My message to all of you who have Crohns disease or ulcerative colitis is to educate yourselves. If you care about awareness it starts with you. Learn from credible sources, challenge the information you know or think you know, and when someone asks you about your IBD make sure that you know how to answer. Remember that misinformation spreads very easily and the current IBD support groups on the internet are full of bad information being spread around. Just because it is said all over the place or you keep reading it from patients does not mean it is true. Remember that awareness isnt a purple ribbon. Awareness isnt as simple as changing your profile picture and saying things like we need a cure. Crohns & Colitis Awareness week to me this year should be focused on our community. I want us to be aware by being properly educated. It starts there and it turns into so much more - but we will never get there if we ourselves do not fully understand IBD itself, why we need awareness, and what real awareness looks like. I care because Crohns disease and ulcerative colitis is serious. It has affected my life in ways only someone who has lived with a severe chronic illness could understand. It has both destroyed me and yet somehow turned me into someone I love and feel proud of. This year alone (just one year out of a lifetime of this) I had surgery because my small intestine, the only intestine I have left, twisted around my mesenteric artery cutting off the blood supply and leaving it to turn necrotic. I was rushed into surgery to fix that and save my life. This year I spent 9 months on TPN - intravenous nutrition I received through a central line. The first few months of this year I didnt eat anything at all by mouth and the rest I relied heavily on my TPN. This year my abdomen was cut open in the same spot for the third time. This year I spent a total of 3 months in the hospital. This year I went septic and then had a reaction to one of the medications used to help treat it. This year I had an NJ tube inserted (a tube that goes in through your nose and passes down into the first part of your small intestine) to feed me. It didnt work but caused me a lot of throwing up with the tube in and a ton of nausea. This year I was transferred to the cardiac floor for awhile because my heart rate was so high they were too afraid to keep me on the surgical floor because they didnt have the training to take care of me anymore should I need certain treatments for my heart. This year my motility shut down so bad that nothing was moving through me - even air became trapped so much so that it pushed my diaphragm up and compressed my lungs. I had to have an NG tube inserted to get the trapped air out and decompress my lungs and calm down my heart rate. This year I had a home care nurse come take care of me at home much of the year. This year my kitchen had a separate refrigerator for my TPN supplies. This year I had multiple NG tubes, CT scans, x-rays, barium follow-throughs, and scopes. This year I had many painful abscesses. This year I continued my remicade infusions but had to make adjustments because they were becoming less effective. This year my hemoglobin and hematocrit levels have consistently been too low. This year my iron levels have been so low that the side-effects of iron deficiency anemia have been ever present. This year I started intravenous iron infusions to hopefully help that. This year I have had malabsorption. This year my arthritis has been so bad that I would wake every couple hours nearly crying from the pain and it seriously disrupted my ability to do things and the quality of my life. This year I have felt bad about myself because my health has caused me to be out of work since my emergency surgery at the beginning of the year. I have felt like a failure and fear the future. This year I have gained and lost weight, gained and lost, gained and lost, so that every month I feel like I dont recognize myself. This year I have missed out on much because of pain, exhaustion, hospitalizations, etc. This year I had telogen effluvium (hair loss) caused by medical trauma. This year I lost my health insurance. I had a surgery team accuse me of an eating disorder when my NJ tube feedings failed and they couldnt figure out why. This year I spent the majority of the time in the hospital alone without someone there to advocate for me. This year I have struggled financially feeling guilty and forever in debt to those who have been so kind to help me make it. This was only what I can remember. This was only one year of my life with Crohns disease. This was just touching the surface. This is why I know that awareness is important, for me and all of the people I know with IBD. On a happier note - This year has been both terrible and incredible. This year I was asked to be part of the IBD Social Circle by Janssen. I was sent to Digestive Disease Week and got to do really great things. This year I received a travel scholarship to attend the Oley Conference. This year I got to watch my friend swim across Lake Erie while he worked at raising real awareness all year long. This year I got to host a IBD event in Orlando where I met some great new friends. This year I met new friends and reconnected with old ones at Get Your Guts in Gear. This year I got to do some really cool filming with a good friend where we got to talk about our lives with Crohns disease. This year I had people come up to me who were there just because they wanted to meet me, and they cried, and they gave me gifts, and they said the nicest things and I will never understand it or feel I deserve it but it was the most amazing thing to ever happen. This year I met doctors who said they were excited to meet me. This year I read wonderful things written to me by patients who made me feel really lucky to be able to help. This year I started seeing a new GI and going to a new hospital and I wonder why I didnt make that switch years ago because it is a great change. This year I got to do what I consider the best thing I do every year for the 6th year in a row - Camp Oasis. This year I was reminded again how lucky I am to have so many friends in my life with have Crohns disease or ulcerative colitis. There was a time in my life where I was all alone in this and now I cant imagine my life without all these people who have helped me become who I am now. This year something happened that was an unexpected surprise and though I never saw it coming I cant imagine it not happening. Sooooo yeahhhh.... what I am trying to say is to my community - I ask you to spend the next year educating yourselves well about IBD. To the GIs, nurses, people who work for pharma, etc. I want to say, thank you for dedicating your work to helping people like me. Yep. Its been another crazy wonderful year.
Posted on: Tue, 02 Dec 2014 03:35:26 +0000
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