Tag Archives: ileostomy

Zip-a-Dee-Do Dah

So, here’s something I never thought about until recently. I was invited to a non-traditional birthday gathering at a ropes course. This is one of those places were you climb rope ladders, fly on zip lines, and otherwise flex some muscle. I didn’t want to participate for a number of reasons. The first, and this will not shock anyone who knows me, is that it is just not my idea of fun.

However, I also had some serious worries about how I would hold up. This event would be outside in August, and that means it could be H-O-T hot! As you probably know, with an ileostomy, dehydration is an enemy.  On this course you are not allowed to bring along anything and need to have your hands free. So, I imagine schlepping along some Gatorade is out of the question. Plus the course is supposed to take up to 3 hours to complete. That’s a long time for heat, humidity,and exertion. What if I feel I’m pushing it too far and need to stop? Hard to stop when you are 40 feet up in the air and attached to a zip line. Plus this group of people, who I barely know, may not be very supportive or understanding.

And then I wondered about the harness you have to wear. What if it smushes my ileostomy or causes any harm? What if it is painfully uncomfortable for 3 hours?I read some discussions online, and it sounds like zip-line harness usually don’t cause a problem. However, it depends on the placement of the stoma.

I debated this for quite some time. I hate to feel like a wimp, but I’ve come to appreciate the fact that I can avoid potentially stressful or even dangerous (health-wise, that is) situations. I’ve wimped out and declined the invitations. The good part is they are also gathering for dinner after and I plan to join the festivities then.

However, the more I thought about it, the more I came to realize that I would like to do this. But I want it on my terms in a way that feels controlled and comfortable. I want to go in Autumn when it is not hot, plus I want to do it with some close friends who I know will be supportive.

So, why do I want to do it? Well…..I know I’m doing the right thing by not participating with this group at this time. But, I almost feel like a challenge has been issued and I want to get out of my comfort zone. It could be really empowering and fun. So, maybe, just maybe, I’ll do it and be sure it is at a time and place where I am comfortable. Maybe that is the most empowering thing of all!?

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Let’s talk about…shhhhhh

First, thanks to Ostomy Secrets Facebook page for pointing to this blog.  This actually inspired me to write a post about…well…..

Let’s be frank, shall we?  There can be those private moments when a gal doesn’t want to think about an ostomy. I’m very blessed to have a wonderful husband who doesn’t seem to notice or care about my ilesotomy. But, it still bothers me in those intimate moments. Sometimes I wrap a scarf around my waist. Other times…and this is going to sound totally weird and I can’t believe I’m even writing this publicly….I wear a tight t-shirt or tank top around my waist. When I do this, the shirt is bunched up (let’s call it ruched to be fancy) and resting above my thighs.  It holds my ileostomy in place but admittedly may not look fabulous. Usually, though,  I am…..well…..au naturalle, and don’t think about it until I hear the crink-crink-crinkling of my ileostomy.

I’ve been thinking about purchasing the Ostomy Secrets “Foxy Wrap.”  These look very va-va-va voom. Rrrrrrr. Seems like it could be a good solution. I also have looked into the My Hip-T. Even though these are not designed for this purpose, I wonder if they could help ‘contain’ the situation.

Can I tell you a secret? I did something totally daring recently. On a lark, I scheduled a “boudoir” photo shot to surprise my husband with a photo book. This was something COMPLETELY unexpected for me to do, and actually was a great deal of fun. This was a really big deal for me and, honestly, I’m so proud of myself for doing it. I’ve come a long way from the girl who was self-conscious about her ileostomy and wore baggy pants two sizes too big just to hide in them. Still, I really stressed over what to wear for the pics. I delved into the world of lingerie to find things that made me feel sexy and look photo-ready.

My favorite outfit was this slip from Victoria’s Secret. I was so excited when I discovered that I could wear this….I was able to fold my ileostomy in a way that it was hiding behind the pink panel in the front. I went all out with the garters, stockings, heels and even wore a long strand of pearls. Doing the photo shoot was quite liberating. And it is really a thrill to look at the photos and not think “Hmm…can you see my ilesotomy?” but instead think “Dang, that’s me!!”

Water Water Everywhere, But What’s a Gal to Wear?

Yes, it’s summertime, and the living is……hot. I’ve always found it challenging to find a bathing suit that I feel confident and comfortable in, and that doesn’t look totally frumpilicious. I’ve heard stories of people with ileostomies wearing bikinis, but that is just not an option for me. As I’ve mentioned before, my ileostomy is placed fairly high up. My scar runs from below my breast bone all the way down. So, I’m absolutely a one-piece bathing suit gal. But, as you know, that is not so easy.

I’ve tried the cute little skirts, which work really well until you actually try to swim and then if you are standing in the pool they float up and look like they are doing underwater ballet. I’ve also tried to wear a plain old one-piece bathing suit, and have success with that until I feel self-conscious when my appliance begins to fill up. So, when I wear that I seem to want to use the restroom every ten minutes!

Perhaps my greatest success was discovering some swim shorts from Lands End. I found this worked well when worn over the one-piece, or combined with a long tankini top. At least, I felt comfortable in it and wasn’t as worried about my appliance.

I am thinking about ordering this high-waisted bottom from Land’s End. Looks like it has some potential!! We’ll see. And I’m also eyeing some suits at ModCloth. They have a fun, retro feel. Haven’t dived in (no pun intended). My goal is eventually to find something I feel comfortable enough in that I can happily take my preschooler to swim lessons!

Body Image, a rambling post

We live in a world where Victoria’s Secret models are celebrities, Kirstie Alley is called a pig for being overweight, and jeggings are a fashion trend It’s not always a nice place. So, take a young person who is still becoming comfortable with her body, promise her a j-pouch, discover in surgery that she has Crohn’s disease which cannot be treated with a j-pouch, tell her she has a permanent ileostomy when she wakes up, and then let the fun begin.

I know…I’m not very subtle, am I? Yes, I’m talking about myself. But I know there are others who share the story of learning to love their ostomy when they are young. For me, I was in my mid-twenties when I needed to have surgery. Even the doctors I consulted with before surgery acted like I would want a j-pouch over an ileostomy. I was convinced that having an external appliance was the worst possible outcome. But I learned the lesson that I have NO control over certain things, and woke up with an ileostomy. I’ve come to accept and embrace it. I certainly am much healthier because of it. I’ll never forget when I woke up from having my surgery, I said I actually felt better and my dad said with a smile “It’s amazing what removing a diseased organ can do.”

At any rate, in my teens and twenties, I was always very modest about my body. I would prefer to wear baggy t-shirts that didn’t show off my curves. If anything was slightly snug (which usually meant it fit), I would feel very self conscious. Were people looking at my chest? Is this too tight? I wouldn’t want to draw any attention to myself. Heaven forbid.

Then, to suddenly have an ileostomy in my mid-twenties, well….you can imagine what that does to one’s self image. I wish in the hospital instead of teaching me how to take care of the appliance, they also taught me how to take care of my self-image. I was repulsed with the appliance and felt like it was the end of the world. I would have welcomed any tips about what to wear, how to feel confident, anything. Of course, that would come later, but wouldn’t it have been wonderful if there was a program in place that would help me adjust.

It has taken a LONG time, but now in my thirties, I am comfortable with my body, comfortable showing off my curves, and aware of what works on me and what doesn’t. My ileostomy is part of me, and I’m thankful for it since it has helped me be healthy. I still resent looking at a Victoria’s Secret catalog, but not because the models are so gorgeous. No, I resent the fact that I can’t wear a bikini without my ileostomy being obvious. But mostly I resent the fact that I didn’t feel more comfortable with my body at an earlier age.

And the results are…..

So, my hosiery experiment was not exactly a success. Here are the results….

 

  • Hanes Silk Reflections Non-Control Top in Little Color. Ok…..umm…soo…the color was not ‘little’ enough. They had that horrible orange, suntan look. My husband, who never offers fashion advice unless it is an extreme situation, suggested that I swap them for a different pair. They were that bad.
  • Hue So Silky Sheer in Natural. The color was great, and these seemed sturdy enough to hold up to some decent wear. The only problem, and it was pretty significant, was that the crotch seemed  to fall unusually low. Even though the waistband was pretty high on my abdomen, the crotch was saggy. All day at work I felt like I needed to do odd contortions to make sure it did not fall down! Maybe I had a defective pair or something. I will have to give them another try. But, based on my saggy crotch experience, this brand isn’t for me.
  • Calvin Klein Chiffon Sheer – sheer to waist. Gorgeous color. Perfect fit, though the waistband felt a bit low but still was workable. The only problem was that in one day I managed to run two pairs of these! I mean, come on. Both times it happened when I gave the waistband a tug to try to pull it above my ileostomy. I wasn’t pulling it *that* hard. Honest. But these things seemed to run if you look at them the wrong way.

So, bottom line is that I’m still searching. Perfect pair of pantyhose, where-for-art-thou? In a pinch, I would go with the Calvin Klein’s, though I would be terrified of the plague of a million runs.

Hosiery, Part Deux

Ok…I have an important event coming up this week and pantyhose will certainly be a part of it. However, which type? This weekend I loaded up on some different types of non-control top sheer pantyhose. They are:

1) Hanes Silk Reflections Non-Control Top in Little Color

2) Hue So Silky Sheer in Natural

3) Calvin Klein Chiffon Sheer – sheer to waist

I’m hoping to test out which is the most comfortable (particularly with my ileostomy) AND which actually looks the best. I have pretty pale skin, so it’s tricky to find a ‘natural’ looking shade that isn’t too yellow, too tan, or too white. By the way, a 6 year old cousin once said “you are the whitest person I’ve ever seen”….umm…er…ok. She is from California and all so I guess I’m not like the bronzed beach babes she is so used to.

I’ll let you know what the verdict is!

The Holy Grail: Jeans

Ok, so admittedly it took me a long time to find a pair of jeans that would work well with my ilesotomy. The unfortunate low-rise trend caused me all sorts of issues, since my ileostomy is placed fairly high on my abdomen. I know some people don’t have issues with their pouches appearing well above the waist line, but I seem to be rather…um…prolific in my output and really don’t care for the pouch expanding above tight pants, making my belly look lopsidedly pregnant.

I basically wrote of jeans for the longest time. And those I wore were either uncomfortable or so baggy to give me a high waist line that they did nothing to flatter my figure. And then one day the clouds parted and I heard angels sing and I found the right jeans for me. The ones that work for me are Ralph Lauren jeans. Just the plain old Lauren jeans they have at Macy’s, not the uber expensive type.

And now, thanks to some backlash over the low rise phenomenon, and the realization that women above the age of 15 have more success avoiding the ‘muffin top’ by having pants with a higher waistline that holds them in, there are many more options available! Another angel-singing moment for me was finding Levi’s 512 Perfectly Slimming Jeans. These jeans are awesome! I live in them when I’m not at work. They are firm enough that they hold my appliance in, and yet have enough stretch that they are very comfortable. They also look really sharp. I realize it is still a bit high for a waistband, but I usually don’t tuck on my outer top (I always wear a tank underneath and tuck that in though…it helps compress everything AND helps me avoid flashing my appliance to the world when I pick up my son).

Seriously, if you are looking for jeans, I highly recommend the 512’s.