Wednesday, April 11, 2012

I have Crohn's disease

but it doesn't have me.

In August of 2003 I was diagnosed with Crohn's disease. Crohn's disease is a form of inflammatory bowel disease (IBD) that usually affects the intestines but can occur anywhere from the mouth through the end of the rectum (anus). Sounds fantastic doesn't it? The exact cause of Crohn's disease is unknown *which is why you should support CCFA Take Steps Be Heard! but your genes, environmental factors and the body over-reacting to normal bacteria in the intestines. As an autoimmune disorder, the body's immune system mistakenly attacks and destroys healthy body tissue. It just keeps getting better huh? Crohn's can occur at any age but is most likely to rear it's head between the ages of 15 and 35. Some people are more likely to have Crohn's disease including those with a family history, the Jewish population and smokers. I'll let you guess which of those categories I fall in to.

The delightful symptoms of Crohn's disease can be all of or a combination of crampy abdominal pain, fatigue, fever, diarrhea, constipation, loss of appetite, pain with passing stool, fistulas, mouth ulcers, bloody stools, rectal bleeding and swollen gums. Some people can have very mild and infrequent symptoms while others can have them all at the same time and VERY severe. From reading the above you can imagine that you probably wouldn't recognize someone with Crohn's diasease walking down the street. Heck, you might not even know one of your friends has Crohn's disease - except for the weight loss part which a lot of Crohn's patients would pass off as "dieting" to friends instead of going into the details of their romance with the toilet. Bowel movements aren't an appropriate topic of conversation for most people - unless you are a GI doc, a colo-rectal surgeon, a new parent or an IBD patient. How many times have I heard "but you don't look sick"? More than I can count.

As an IBD patient you get to undergo all kinds of super invasive tests - as if I didn't lose enough modesty having 2 children, it is definitely gone from having Crohn's disease. Colonoscopy, endoscopy, CT with IV and oral contrast, MRI, sigmoidoscopy, upper GI series, barium enemas, etc.

I don't want to bore you with each flare-up of my disease and all my numerous hospital visits because honestly, I don't think I could remember them all without my voluminous medical record. I'll just give you my last stop. In December 2011 I had a total proctocolectomy with end ileostomy - from my colon to my rectum was removed and my hiney was sewn shut. Funny sidenote, the night before surgery I announced I was wiping my butt for the last time....only to arrive at the hospital the next morning to 2 fleet enemas before surgery. So my last butt wiping was actually at the hospital - oh well! Anywho, an ileostomy is a surgical opening constructed by bringing the end of the small intestine (ileum) through the abdominal wall and onto the skin. Intestinal waste passes through the ileostomy into a pouch that I wear on my abdomen and I empty whenever I feel the need, it starts to get full, I am leaving the house, before bed, etc. If I am home all day sometimes I will only empty it twice - depending on what I eat! Mine is located on the right side of my abdomen just to the right of my belly button (or where my belly button used to be!).

So, why did I start this blog? Well - because I want to share that you can still be fashionable with your ileostomy! For the first several weeks after surgery I lived in pajama pants, yoga pants, basically anything with a loose elastic waistband. I was still trying to figure out how this stoma (the part of the small intestine that sticks out of my skin) was going to work and fit into my life. Overtime I eventually wore my first pair of jeans! I combed the internet looking for ostomy apparel - I found LOTS of websites Ostomy Secrets, Vanilla Blush, White Rose Collection Fun Ostomy Belts to name a few, but I was hesitant to spend big bucks on something I wasn't sure was going to work for me. Plus, most of what is out there is focused on undergarments, lingerie and similar things. I wanted to wear what I already had in my closet but I knew I was probably going to have to wear it in a different way - and so Detoured Fashion was born.

So, I look forward to sharing what I find with you! The fashion I share will work for ostomates and non-ostomates alike so be sure to check in and see what I have found and PLEASE PLEASE PLEASE, leave ideas, suggestions and/or questions in the comments!!! In addition to helping my fellow "osto-mates" (a tip of the hat to my new Aussie friend) I want to help erase the stigma or taboo of the ostomy. I want to make sure the right information is out there for people - no question is too personal and if it is I will let you know!

1 comment:

  1. Thanks for sharing your experience. We people cant feel the pain so we cant give you too much suggestions regarding Ostomy. All I could do is that make people aware about this problem before it gets worse. People find it difficult to wear their favorite dresses, they can use the Ostomy Lingerie as they are mainly designed for this purpose.