Tag Archives: World IBD Day

This is IBD

I am spending this World IBD Day in the hospital. This was definitely not my plan for this day. But I suppose it’s kind of appropriate since those living with Crohn’s disease and ulcerative colitis never get a break and they can be fine one day and hooked up to a bunch of IVs at the hospital the next. And that’s pretty much what happened to me.

stephanie hughes hospital surgery colectomy stolen colon ostomy blog recovery ostomies advocacy stephanie hughes bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomy blockage obstructionLet me say first of all, though, that I am not in the hospital for a Crohn’s flare. But I am in the hospital as a result of Crohn’s disease and the surgeries I’ve had because of it. I’ve been dealing with some bowel obstruction issues since Sunday and they got even worse last night. When I woke up this morning, I still was having very little output, so out of an abundance of caution, especially considering my pregnancy, I decided to go to the ER. It’s now 11 hours later and I’m still not having a lot of output, or at least not anything substantial.
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Who do you support on World IBD Day?

World IBD Day inflammatory bowel disease may 19 crohn colitis ostomy stephanie hughes stolen colon blogI recognize World IBD Day on May 19th because more than 5 million people worldwide are living with an inflammatory bowel disease, myself included. Around 1.4 million of those people live here in the US. Considering these numbers, I am always surprised at the lack of knowledge out there.

If find that most anytime I tell someone that I have Crohn’s disease, they more often than not answer with something like, “Oh, my ______ has that” (fill in the blank with cousin, friend, aunt, etc.), but they often don’t know much more than that. Chances are, you know someone who is affected with one of these diseases. I may be that person for a number of you out there.

IBD is one of the five most prevalent gastrointestinal disease burdens in the United States, with an overall health care cost of more than $1.7 billion. This chronic condition is without a medical cure and commonly requires a lifetime of care. Each year in the United States, IBD accounts for more than 700,000 physician visits, 100,000 hospitalizations, and disability in 119,000 patients. Over the long term, up to 75% of patients with Crohn’s disease and 25% of those with ulcerative colitis will require surgery. (from the CDC)

I am saddened to think of the many people out there who suffer in silence, with no one they can turn to who can understand. That was me for many years. I tried to live as normally as possible, but that’s a lot to shoulder all by your self. I feel very blessed to have such a great family of IBDers out there who I can turn to for advice, sympathy and always some good butt jokes.

Simply today, I want to remind you of those who deal with these diseases daily. Remember your grandmother, your uncle, your friend who have to live with the symptoms such as pain, diarrhea, fatigue, cramping and blood loss. Educate yourself and be a part of the push for a cure. These people need your support. Let them know that you are standing behind them. The Crohn’s and Colitis Foundation is a great resource to learn about the diseases and how you can get involved to help find a cure.

Who do you support on World IBD Day?

 

Celebrating my first World IBD Day

Today is World IBD Day 2012: a day to spread awareness of Crohn’s and ulcerative colitis. It’s a perfect example of what I hope for this site to be someday. Even though there have been previous World IBD Days, this is the first one I have personally taken the time to recognize.

World IBD Day inflammatory bowel disease may 19 crohn colitis ostomy stephanie hughes stolen colon blog

There are a number of reasons that I started this site. One was to be able to keep people updated. I’ve seen such an outpouring of support over the past weeks and I wanted to be able to let everyone know how I’m doing and this is the most efficient way to do that.

Secondly, I did it for myself. For years I never talked about my Crohn’s. I wouldn’t NOT talk about it. If someone asked me or if it came up in some way, I wouldn’t avoid it, but it wasn’t usually information that I would volunteer. Last July I posted “My name is Stephanie and I have Crohn’s Disease” on my other blog. It was the first time I really put it out there and it was a good feeling to finally talk about it. Since then, it’s become a form of catharsis for me to be able to share my feelings and experiences.

Another reason is because I find that since so few people want to talk about it, there are not many places to go to for help and reassurance. I hope that I can be a voice that shows you are not alone. I’ve been blessed over the past weeks to find others out there who are dealing with the same things that I am. I’ve spent years not really having anyone I can relate to. It has been very encouraging to find others who know what it’s like. I hope that I can provide that same encouragement to others who feel alone and as though no one understands.

And finally, it’s because I have found that very few understand this disease. Nearly every time I tell someone I have Crohn’s Disease, they tell me they know someone else who also does, but they don’t really know what it means. In the US alone, 1.4 million people live with IBD (Inflammatory Bowel Disease, which includes both Crohn’s Disease and ulcerative colitis). And nearly 1 million people in North America have ostomies, with another 70,000 having surgery each year. And the numbers are growing. And with that, it’s becoming more important that people understand IBD, because odds are you know someone who suffers from it. (Well, most of you know me, so you’ve already helped prove my point!)

I’m just getting started with my site, but someday I hope for it to be more than a blog. I hope it can be a platform for advocacy and change. I’m in the early stages of working on how to do that, but it has become a passion of mine over the past months and especially the last few weeks since I launched the site.

I pray that as we move forward with awareness and research, that those who live with these diseases will no longer feel the shame of the stigma that has too long been attached to IBD. And I hope that today on World IBD Day, you’ll think of those you know, and those you don’t, who suffer from IBD.

For more information on IBD and for some of the blogs that have been a great encouragement to me, check out the links under Crohn’s Resources.