Hi All, my name is Eric and I’m going to be working with everyone to make some exciting changes to this blog. UC Story has grown so much in the past year that it’s time for some renovations. We’ve got some neat stuff planned for the future, including a site redesign, a new and simpler domain, brand-spankin’ new hosting package, and a bunch of other goodies to help you share your stories, thoughts, and feelings.
Mark and Megan will be busy this week (and beyond) moving across the country so I’ll try to hold down the fort. In the meantime, if there are any questions or comments you have, suggestions for the new site, design, features, etc., drop me a line in the comments.
Oh, I’m 4 weeks into a J pouch of my own, and I love it!
Things have been quite the rollercoaster ride lately but I finally got some good news! I have been waiting since October to find out if I have Crohn’s in addition to UC, in which case the surgeon would not be willing to do the J-Pouch surgery. After 3 opinions, it was determined that I don’t have Crohn’s and so we can go ahead with the surgery! The surgeon is aiming to do the takedown in one surgery but if doesn’t go perfectly, it’ll be two. Right now I’m scheduled for February 10th but I’ve asked to have it bumped back a couple of weeks so that I have more time to complete my prospectus (proposal for my dissertation) before I go in. Although the idea of having another surgery is tiring, I’m so excited that the ileostomy is really only temporary! I was really getting used to the idea that it was permanent. Really, I know now that it would be OK if it was permanent but would really prefer to have it reversed.
I will be doing some pre- and post-surgery pictures. My scar is really bad, so I don’t want to freak people out but I think it is worth showing. It is so bad because it was an emergency surgery and it got infected and so had to be reopened. The surgeon says that he’ll do his best to remove the scar tissue but if it happens again, he’ll refer me to a plastic surgeon.
I was recently flipping through the trend magazine, People. The cover story was about Michael J. Fox and his battle with Parkinson Disease. The article discusses Parkinson, Michael’s symptoms, states that nearly 1 million people in the US live with the disease, and it talks all about the advocacy being done for the disease, especially by high profile individuals.
My question then is this: According to Mayo Clinic nearly 1 million Americans live with IBD (Crohns or UC). But I’ve never seen a celebrity or high profile individual on the cover of magazine “I’m living with UC – and I sometimes have accidents in my pants” – Why not? I figure if the shame of IBD related symptoms was not so embarrassing in society, maybe it would be easier to draw awareness to the diseases.
Therefore, I want your opinion on whether or not you think IBD would receive more public advocacy if the symptoms of the disease didn’t have to deal with things like poop and such?
I was recently reading the November 27, 2008 issue of Rolling Stone Magazine, and they did an article on the famous fashion designer Marc Jacobs. The article is really interesting and talks about his story of living with UC – it is excellent that someone so high profile is willing to talk about their disease. My only concern though is that in the excerpt below, it seems some of the info about the disease may not be fully correct (i.e. the indication he has UC because of poor diet and smoking…that may not be fully accurate way to portray the disease). Excerpt from The Deep Shallowness of Marc Jacobs by Vanessa Grigoriadis:
“Jacobs didn’t take care of himself when he was out of rehab. He chained-smoked, ate poorly and soon developed ulcerative colitis, a stomach ailment involving the chornic inflammation of the large instestine (his father died from complications relating to this disease). “It was really debilitating,” says Jacobs. “I was in a lot of pain, and it kept getting worse, with more outbreaks and flare-ups. I lost so much time every day in the bathroom, uncomfortable and ill.” He relasped in 2006, but decided to try a different way to address his problem: He hired a nutritionist who advised a drastic lifestyle change, with no sugar, dairy, coffee or flour, plus exceercise, macrobiotic food, a nap and sunshine every afternoon. “Instead of Wendy’s five times a day at weird hours, and Coca-Cola after Coca-Cola, now I’m drinking six bottles of water, green vegetable juice and wheat-grass shots iwth giners,” he says laughing. (Grigoriadis, 2008, p. 136)
Here is a video with an interview with Marc Jacobs, showing how eats healthy, he even takes VSL#3…
Video from Style.com of the fall/winter 2007 Marc Jacobs Fashion Show below. People living with UC achieve great things. Hopefully, Marc will do public advocacy for UC since it affects him and affected his father.
Reference: Grigoriadis, V. (2008, November 27). The deep shallowness of Marc Jacobs. Rolling Stone, Issue 1066, p 61-65, 136.
Hi everyone. My name is Casey, I’m 21 and live in Florida. I took a lot of pictures through the last year of my surgeries and decided to share in hopes of helping someone going through the same situation. Feel free to ask questions or just leave comments! my email is email@example.com
I was diagnosed with ulcerative colitis in Jan ’07 when I was 19. I was put on Asacol and did not respond. For some reason I missed the learning period of being able to swallow pills and was chewing them unaware that they were a time release medication. About 2 mo. later I was hospitalized for a month to get the first flare up under control. They took me off Asocol and started me on IV steroids and Cyclosporine. I had many blood transfusions because I was losing a lot of blood in my stool. It was a very tough month, I was vomiting everything I tried to eat and lost about 30lbs. I was still taking cyclosporine and prednisone 11 mo. later when I decided to go through with surgery.
I’ve found that there are two things that have made me feel better lately, so I thought I’d pass them along.First of all, going back to the gym has been really fantastic for me.I was initially leery of going for four reasons: (1) the thought of getting changed at the gym was extremely stressful; (2) all the moving about seemed like it would increase the chances of someone noticing the stoma pouch; (3) I was worried about how Lil’ Stomy would get the way of some activities, particularly yoga; and (4) I found it depressing how little physical activity I could do compared to what I could do previously (about a month before I entered the hospital, I had been training to run my 3rd 10km race and 6 months later I didn’t feel capable of running at all).But, I went back and it feels great!Instead of heading to the gym straight from work, I go home first and change there.A little more of a hassle but I don’t have to lug all that stuff to work, which is a bonus.Yoga can be a little awkward if the pouch fills up while I’m there but it is very manageable and generally unnoticeable.My strength and cardio have been increasing rapidly and the quick gains are very encouraging (the bonus of starting at such a low level).I ran 4km today (slowly) and I really felt like I was beating UC.It’s annoying to think of having to do it all again if I’m getting the j-pouch (will have an update on that in a couple of weeks) but the surgeons said I had to be as strong as possible to have the surgery go as smoothly as possible.
Secondly, I bought a wig!My hair has been a huge issue for me and a good friend of mine convinced me to buy one.I don’t wear it to work because everyone there would know its fake, but I wore it out Christmas shopping today (it’s a holiday in Canada for federal government workers – yay for me!) and it felt really good to look normal again.A cashier even asked me where I had my highlights done!I bought a synthetic one and it was relatively inexpensive and I didn’t have to worry about where the hair came from (perhaps it’s unfounded, but I was worried about unethical means of obtaining the hair).
We want to ask for your support of ucstory, but also for all IBD/UC related awareness by nominating UCSTORY for the 2008 Weblogawards. Our hope is that sites like ours can earn mainstream attention to help bring awareness to the reality of living with UC and other related diseases.
Please visit Weblogawards and scroll down to the comment posted by “Megan” nominating ucstory, then click on “+” rating (green button) to show your support for our nomination!
Be sure to visit her page and give her support! What is so important that we must realize is that UC and the surgery crosses borders, UC doesn’t discriminate by age, gender, country. In order to foster awareness of UC and advocacy we must acknowledge the global impact of the disease!
We believe you will bring change and a united spirit to our country. Our letter to you is not political, but it is the voice of a family that has struggled in the American health care system to manage life living with a serious chronic disease.
In the opening of your acceptance speech you stated: “It’s the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Hispanic, Asian, Native American, gay, straight, disabled and not disabled. Americans who sent a message to the world that we have never been just a collection of individuals or a collection of red states and blue states. We are, and always will be, the United States of America.” – Transcript excerpt from Cnn.com
Your words are beautiful and applicable to the future our country. Thank you for including all ages, all races, gender, sexuality and disabled and non-disabled Americans in your speech. Please know that 90 million Americans are living with chronic disease. These diseases challenge families and quality of life every day. We struggle with health insurance, rights at work, and equality when living with illness. Please take extra measure to protect our rights with health insurance and stem cell research. Also, watch the chemicals allowed in our everyday products that may be facilitating disease.
We hear your words to unite this country and we believe that under your guidance that a voice of gentleness, compassion and kindness is the future of our country.
It is time for the 2009 Colondar. from the Colon Club, the 2009 Colondar tells the remarkable stories of colon cancer survivors. The colon calendar is $16.00 and well worth the money to support colon cancer awareness.
Be sure to support the cause, and buy the colondar for yourself and family and friends for the holiday season!