Where I am coming from

I'd lik to take it back to fashion for a minute. I've been reading posts on several of the IBD/Ostomy sites that I frequent from new ostomates wondering "how to dress". Right after surgery life is overwhelming and the last battle you want to fight is with clothes. Many think that after surgery you are destined for a life of elastic waist pants, mu-mu's or tunics. Not.true!

Let me show you what I have to work with.

This is a side view of my abdomen - standing normally, not slouching, leaning or anything of the sort. This is just what it looks like for now. FOR NOW I say! From what I gather, this is NOT what the majority of ostomates look like 9 months post surgery.

And here I am holding the camera flat against my chest with the lens pointed straight down - this is what I see everytime I look down. Yes, that is a deep "divet" for lack of a better term. This is a result of multiple abdominal surgeries in a VERY short amount of time. My upper layers of skin became so traumatized that they wouldn't hold a stitch. So nifty internal stitches were placed. Those stitches "came loose" (without having to explain the whole story) and I "dehisced". Dehiscence is a surgical complication (tah-dah!) in which a wound breaks open along a surgical suture. What I'm trying to tell you is my guts spilled out. Seriously. The wound opened up and my insides were there for all to see. Welllll, that was not good. So, I had nylon stitches - I swear they were like fishing line! - placed and those suckers held tight and I guess the last of them were absorbed or fell out or something, I don't really remember anymore.

So, I was supposed to heal up and out. The dehisce was so bad that it left me divided down the middle. Dressing with an ostomy can be a challenge of its own in the days/weeks post op. THIS definitely threw a wrench in any plans I was thinking of! BUT, I wasn't going to let it get in the way of my style so I began searching for things to help push things together. The rest of my body is a 4-6 but in order to get things around my waist I have to get an 8 because there is extra "space" that shouldn't really be there.

Here is an example of how I erase that space:

Jeans with pouch tucked into my undies.

Victoria's Secret bandeau top turned upside down and worn on my hips. It has a good bit of lycra which pulls everything together and just enough to keep my pouch close to my body.

Jeans zipped up with bandeau top on the INSIDE not over the top of the waistband. These particular jeans are a bit loose in the waist so trying to get the bandeau top OVER the waistband is futile. HOWEVER, I do have some skinny jeans that are more fitted in the waist and putting the bandeau top on the inside of those is a bad idea - definitely on the outside over the waistband!

Ready to go! Other people probably don't notice at all, but I can see the very top of my pouch sticking out a little - a simple "blousing" of the tank top took care of that. Just a little adjustment.

Is this what you think a "bag lady" looks like? What ostomy pouch?

Ignorance is ugly

and pathetic as far as I am concerned. It makes me NUTS when people talk about things, make plans about things, decide how rules should affect other people when they have NO IDEA WHAT they are talking about because they haven't done the proper research. The case in point is regarding a little bit that is going around the ostomy community where certains public park/recreation areas are questioning whether to allow people with ostomies (colostomy or ileostomy) to swim in a public or semi-public pool. ARE YOU EFFING KIDDING ME RIGHT NOW?!

Here is a little blip from the page in question:
"E-Mail Bag

Questions like the one discussed below are occurring more and more frequently in public parks and recreation agencies. Let’s make no mistake about it…at RAC we encourage public parks and recreation agencies to not only meet the minimum requirements for access and inclusion, but to exceed the minimum requirements.

Question: We have a person who wants to go swimming and has a colostomy bag. Has anyone ever dealt with this or do you have a policy in your facility about this issue?

RAC Background: We thought long and hard about this. The public parks and recreation agency that is asking the question is in Illinois and this question was asked by Terri Smith of Water Designs in Salt Lake City. Obviously, pool maintenance and patron safety are factors to be weighed. But the ADA makes it clear a pool operator cannot make a decision based on a fear or suspicion, but only on objective fact. With that in mind, here is the answer we sent to Terri.

RAC answer: Here are some thoughts. We suggest this is a good discussion between staff, the participant, and the swimmer’s doctor or physician’s assistant. Simply explain that the agency has never adopted a policy one way or the other and ask to sit down and talk about the issue. Start by asking questions about colostomy and focus on bag and seal integrity. In our opinion that’s really what this is about.

We did some research and some successful tactics used included:

First, limit swim time to 30 to 40 minutes. Water changes the wax seal around the ostomy and it loses its effectiveness. The swimmer must bring a second bag and be able to install it after swimming.

Second, swimmers should wear baggy suits and cover both the ostomy (the opening) and the bag.

Third, on some websites there were concerns about pool water infecting the bather with a colostomy. That’s an issue to discuss with the swimmer.

We did talk with John Rossetti at the Illinois Department of Public Health. He said this issue does arise regularly. He stopped short of saying a person with a colostomy should be banned from a public pool. He tried to draw a parallel between banning a person with bandages from the pool. But I don’t think the medical community sees a colostomy bag and the ostomy itself as a bandage…it is a tight seal.

Terri, I think that after an interview and an assessment of the status of the bag, a pool could, and I emphasize could, ban a swimmer with a colostomy if and only if it feels the bag or the ostomy lack integrity and that a leak is likely. Absent that likelihood (which of course must be supported by history or facts, not a hunch), let the swimmer in. But I’d never, ever recommend a person be banned without at least a face-to-face meeting and consideration of a number of alternatives (like the first two above).

Finally, someone smarter than us about aquatics ought to talk about cheek wash and compare daily cheek wash loads to the typical amount of fecal matter that leaks when the integrity of a colostomy bag or seal is breached. That’s above our pay grade, but we would love to hear the discussion."

Taken from Recreation Accessibility Consultants

My favorite part of this "email" is 'Second, swimmers should wear baggy suits and cover both the ostomy (the opening) and the bag.' Really? Well, then - I'd like people who are considered overweight to wear sargong wraps while laying poolside. Additionally, if you have cellulite please wear shorts. I mean WHO writes something like that? It is SO immature and IGNORANT!

Here are some THOUGHTS Recreation Accessibility Consultants - how about YOU educate yourselves and your membership about ostomies and how they function before you start proposing ways to prevent ostomates from swimming?

Here's Maggie's Vlog on the topic

And Charis' blog where she already has a temporary post up and plans to update it later.

And because this just makes me want to go watch The Legend of Billie Jean I leave you with this "FAIR IS FAIR!"

Under construction

I am so excited to start this new blog adventure! Please stay tuned and bear with me as I tweak and fine tune things just the way I like them. Next up - an intro for those who don't know me or my journey with Crohn's disease. Please share this link with friends and family!!