I hit 5 years September 2013. To the newly diagnosed, I would say... through suffering can come revolution. Take control of as much as you are able; don't just let things happen to you, shape as much of your life as you can into what you want it to be.
I want to tell you THANK YOU SO MUCH! My mom and I were the only ones caring for her after a resectioning, and her being on massive amounts of pain meds left me to all the measuring and changing of the equipment. I wear a lot of devices for type 1 diabetes and am nowhere new to complex medical but never was I lost more than when she was sent home with me and the one class I received on her care did not help much. We went to local support groups and begged for help and did not get it. Finally, out of PURE DESPERATION...I watched your videos and am still so inspired by you and your gifts of knowledge and teaching 2 yrs later that I had to reach out and ty for something so rare in all this: confidence and HOPE! YOU ARE SIMPLY AMAZING AND HELPED US WHEN NO ONE WOULD OR COULD, DOWN TO THE CLEVER MARSHMALLOW TRICK!!!!!!!!!!!!!!!!!! WE WILL FOREVER BE INDEBTED TO YOU FOR THIS GIFT!!!
Hi Laura, I wan't to thank you for being there for me a year ago when I found out that I had to undergo a Urostomy! I found your video on RU-vid and it gave me an idea of what to expect. It has been 11 months since my surgery and I am going to share my experiences also. Thank you again! Look for my blog coming soon! Jerry
Very good letter. I’m a month post op of colostomy due to cervical cancer and radiation. The words you said “ Kick at the darkness until it bleeds light” was amazing. Thank you for inspiring me
I wasn't diagnosed with uc or ibd, but I had cancer on the skin on my bottom because I used to scoot around on my rear to get around when I wasn't in my wheelchair. Anyway, I didn't have the sore taken care of until 2004. We always thought we could take care of this at home, using everything from heat lamp therapy to Maslow mixed with mercurochrome. Nothing worked. So in 2004 I chose to have my left leg amputated at the hip. Since I'm not ambulatory, it was a no brainier. I'm only facing one obstacle now, since my surgery to use my upper thigh as a flap to create a new half of a bottom. My new obstacle is that I am getting on the list as a kidney transplant patient. For now, I must go through dialysis three times per week just so I can stay alive. I feel fine about all of this. At least I think so.
Thank you so much for sharing this. I really needed it tonight. I’ve been diagnosed with uc for almost 2 years and this last year has been really hard. Seeing people like you who stand as a source of helping others know they’re not alone and they’re not the only one means so much. Thank you for being a light!
I was diagnosed with Ulcerative Colitis 3 months ago, 4 days before my 18th birthday. Your films give so much faith and you're huge inspiration, thanks for such videos, you're great and beautiful :)
Hi..I have had Crohn's for30 years & have had an ileostomy for 28 years. I am now 50. I have not had a lot of hospital time spent and am relatively healthy, although the side effects from the Crohn's are wicked ie: fistulas. My message to everyone who reads Laura's story is that things do get better over the years & keep a good attitude.
What a great video. I LOVE the idea of writing a letter to myself. Four years ago I was in a motor vehicle accident where my neck was broken and I became quadriplegic. After struggling with chronic infections, I had surgery last summer for a colostomy & urostomy. When I got my first look-see at my ostomies, I cried because they looked so beautiful to. I knew that having ostomies would enable me to become more active & improve my quality of life. Similarly as one of your other viewers, I, too, rarely think of myself as disabled. As do many dealing with chronic illness or conditions, we have our work cut out for us and we constantly persevere so we can get on with the business of living. Thank you for being such a stellar example!
You are truly an inspiration and a stunning woman inside and out, you have a purpose and your helping so many others with your videos, your honesty and vulnerability is beautiful!!
I honestly started crying while you read your letter, so much of this is exactly what I went through and it's so good to see that there are others like you who are experiencing similar things and still try to be positiv in life and do something meaningful. Thanks for this video :)
Awesome idea to write a letter to yourself. Being a 30 year old female diagnosed with colon cancer was not easy for me. I have had a colostomy and Illiostomy, been very sick and weak do to having 4 surgeries in less then a year. I always loved my body and now it is scared forever. I am thankful to have my life. My husband has been my rock and our kiddos to. Being close to death and then over coming so much has given me so much strength. Always loved your vids lady.....keep on fighting :)
I couldnt have said it better myself. I just hit 6 years this past December... December 3, 2007 was my first colonoscopy & the official diagnosis came just after followed by a Christmas day hospital stay.
I think I would tell the newly diagnosed to be strong and not to worry so much because that makes everything worse. Talk to family and friends about it. Make sure bosses and profs know, It can be a difficult, painful, stressful, existence if people are expecting a %100 healthy person when it's quite the opposite. I hid my illness for a long time and by the time people actually knew the severity of it I was in the hospital getting my colon removed. Don't be afraid to tell people you are sick. Love your video's Laura :) They have really helped me. Age 22 and very similar story to yours. Waiting for my Jpouch surgery. Thank you for being such an awesome role model
Thank you so much for sharing your story,. You are such an inspiration to me... I was DX with Ulcerative Colitis at the age of 11, I am now 28. I have had so many ups and downs with my UC (prednisone and I have a love/hate relationship). I am currently taking Llialda which seems to be working ok at the moment...Since I've been feeling good, I decided to go back to school. I am in a full time nursing program to get my LVN. Hopefully I can help others with colostomy/trachs etc! Thats my passion. :) Thank you again for sharing!
March 6th will be 2 years since my diagnosis of UC and it has definitely changed my life for better and for worse. I too am still having trouble accepting that it is a lifelong, chronic disease and how I have gone from doing great on Asacol to 5 months of flaring to now starting Remicade while still eating bland foods. I certainly didn't think it would happen so fast. On a more positive note, I went on an amazing trip to Israel last summer with a group of almost all IBDers, some of who are now my best friends and I ran my first half marathon in Vegas with Team Challenge and raised over $5200 for CCFA, all stuff I never imagined I'd do! Like you said, you have to look for the light. Keep making your videos, they are great and you are such an inspirational person! From one Laura to another, one UCer to another, hugs!!! Xoxo Laura
Your just such a beautiful young inspiration to others.. I hope you continue making a difference in the lives of others as well as your own. As I tell my daughter, No one deserves this battle, but your fighting it with such grace. I pray for your healing and wellness.
I think your sharing not only helps us, but it's a good way to work through it for yourself. My story is pretty different, physically, but maybe not that different overall. I'm quadriplegic due to a hangliding accident 28 years ago, at the age of 22. I got a suprapubic catheter early on (tube from bladder to a urine bag) and a colostomy a few weeks ago (which is why I'm your fan now). After 28 years, I still don't accept being disabled. I guess my "problem" is that I just keep dealing with things as they are, fixing them and improving them and doing everything I can that I want in life. I somehow forget what was better or what I lost, and I seem unable to see myself as disabled. This isn't necessarily bad, but it has its downsides. Maybe I will actually write a letter to myself and see how it goes... (Thanks for the idea!)
i think that one thing that also should be said Laura, is that each year there are medical breakthroughs. i hear many times from people i meet and people i know, "my situation is how it is, and will always be that way"... this is not always true. i try to explain this to my mom, who might eventually loose her sight, that there are medical breakthroughs on that area many times a year. i've already found several operations she could have that would make her sight much better. as far as colostomy goes, there are already somewhat related science breakthroughs, such as organ printing. there are new breakthroughs all the time, the last i read is that being deaf is going to be history in the near future. so when you say you will have this for life, no, i don't believe you will... :] though of course none of us know the exact time. best wishes from a guy who spends A LOT of his time reading about medical breakthroughs... progress is inevitable... :] ...and hey, you're cute and certainly seem like a great person, so, it ain't all that bad... \ :] take care Laura
I often forget that you are so young because of your maturity. I also believe that having chronic illnesses make us grow up faster than those who don't. I say " so young" as though I'm so old, haha, I'm 31. I've dealt with health issues since I was a child. Starting with joint problems, then GI issues, etc. Making the transition from a child with a chronic illness to an adult with a chronic illness is difficult and kind of surreal. It's also empowering. We learn to be advocates for ourselves, trust our instincts and make our own decisions. I don't really have much to say as far as advice goes. I won't say it gets better, but some things do get easier. I also believe that having a chronic illness makes us more empathetic and compassionate towards others. All that said, I've been meaning to message you! I'm going for my ostomy surgery on March 19th! It will be a permanent ostomy, as the j pouch would leave me with too many risks for complications given my unique medical history. I'm ok with it, though, as having the ostomy will allow me to feel better and hopefully gain more energy. My pre op appts are on march 4th and will meet with the stoma nurse and go over the procedure with my surgeon, who is amazing. I'm not sure yet I'd she plans on taking out my colon, as it's not actually diseased like with UC, it just doesn't worm anymore, so that's something else we will discuss. I'm both nervous and excited. I guess I do have some advice after all, for those facing surgery, it's scary but it's also a relief. It means we will finally start feeling better! Lots of love to you, Laura, and everyone else!
As soon as I was diagnosed in 2013 with pancolitis, I wanted to crawl in a hole. Here it is a year a some change later and I still want to on some days. I can not say it has gotten any easier, as this disease has a mind of its own. However finding support is HUGE! And I do not mean just people with compassion but people who also have the disease as they truly are the only ones that understand it. None of the doctors I have came into contact with even understand it, as it is called the "practice of medicine". My family loves me but I think they are starting to think that a lot of symptoms are in my head... so finding people who are like you is very important for your emotional health.
Hi- in a.post of your changing bag vid, I ask why you had the bsg. I found this vid so you don't need to answer. Again you are so brave and beautiful! Stay strong my love! I am now a subscriber and will follow you and your journey as long as you share & I will also share your vids with others. you are an inspiration Laura!
February is the most difficult month of the year for me as well. I feel very emotional and anxious that time of year, and I swear when the first of March comes around I feel almost immediately better. I've gone through this so long that on March 1st I have a "Goodtimes Festival". Basically, March is like my New Years. I've done this since year 2000, so this was the 14th year that I have celebrated it. I write a "Goodbye February" letter in which I forgive the darkness of winter which I burn at midnight on the last day of February (or the first day of March depending how you look at it). Obviously I do not advocate burning anything unless you are in a safe area in which it is allowed. On March 1st I make it my goal to only have fun that day. I focus on the good times I've had and plan for the good times I will have this year. I play music, drink kava, look at pictures, read past letters, or watch movies, basically anything that stimulates a sense of sentimentality as well as optimism. Obviously you can celebrate anyway you wish, but the main goal is to say goodbye to the past and welcome back the sunshine! Then, in the afternoon or evening I write a letter of encouragement to myself that I keep with me all year to remind me that no matter how dark things get, light is just around the corner. This letter often proves very useful the next February. I hope that this is helpful, and I wish you the best!
Your yt vids have helped make this so much easier! Thanks so much and the tosh appearance was great. Thanks for doing that he let u raise so much awareness. Hes funny w/out being mean.
you are a brave person truly. But I think it is better in 2015 when you could connect to the wider world through the internet while being at the comfort of your home. Imagine the people 20 years back who could not communicate to the world because they felt too sick to go out..and despirited. Nevertheless, hats off to you.
