Tag Archives: ileostomy

Turn, Turn, Turn

Life is so weird, right? It is jam-packed and can be hard to come up for air. I’m stunned at how much time has passed since my last post. I’ll spare the excuses, even though I have a terrible guilt complex and to not apologize is as foreign to me as littering or slamming the door in someone’s face.

Anyways, I hope that you all are doing well. I’m doing alright, though continuing to deal with some health issues. I’m still being treated for Crohn’s in my lungs. I’m on immunosuppressants and prednisone (along with a slew of other things). As I’ve experienced in the past with prednisone, my body is changing and puffing up. Not too much, but enough that my clothes are snug and my face is bloated. I hate that!! I’m sure many of you have dealt with that as well.

I’m fortunate since my abdomen isn’t changing so much that it causes trouble getting a good seal for my appliance. Be thankful for those little things.

But, it has made me appreciate the importance of having clothes that I can wear when I’m bloated vs. when I’m not. Or even for those days when I have a higher output or when I don’t. I don’t advocate having two wardrobes, but I do think it is important to know what you can quickly change into if you hurriedly get dressed for work only to find that you can’t get the zipper up on a pair of pants. For me, it is usually pulling on a looser dress, or putting on a suit jacket or sweater.

I need to work on the odd vanity issues that are coming up for me about my face. I  feel so self-conscious about it, and then get annoyed at myself for feeling that way. In the past I’ve been on very high doses of prednisone,  and had much more severe form of facial rounding. Even so, I feel very aware that “my face is not my own.” I’ll be ok, but a looking forward to feeling like myself sometime soon.


Once Again, With More Cowbell

Yes, I’m thinking of that Saturday Night Live skit from way back when! Why? Well, I was thinking of embellishments on clothing and somehow ended up thinking about the embellishments with the cowbell. At any rate, I was musing over how some of my favorite clothing items are actually classic-leaning trends. These trends often include embellishments on shirts and dresses — ruffles, layers, embroidery, ruching, wild prints or other fun elements that can be our friends.

Now of course there are a ton of trends that are foes as opposed to friends. We don’t need to review all of those since the list would be too extensive. But at least it is a double-edged sword. Along with the bad can come the good!

So, what trends are we seeing now in the stores that could be friends to those of us in the ostomy chic party?

  • Peplums — Peplums often have a higher waist and are loose around the midsection. Huzzah!
  • Fit and Flare — I love that things are being labeled as “Fit and Flare.” Stores don’t want to call it an A-line? No idea why, but “Fit and Flare” is descriptive. Again, another option that is figure flattering and then usually not tight around the midriff.
  • Structured Lace — Lace adds dimension and layers to an outfit. The pattern in lace can help distract the eye. Plus it lends a softer edge when coupled with stiffer, more structured material.

That’s just a few. I’ll let you know if I think of more (and feel free to do the same). In the meantime, more cowbell!

The Rules

It seems like the only way I am able to get any clothes is via mail order, usually placed at 11:00 in the evening.  With that said, I can often glance at something and tell if there is a good chance that it could work well for me or not. I have a number of rules in my mind, and 9 times out of 10, they really are a help. Of course those rules apply to me and my above-the-waist ileostomy, so mileage may vary!

Here are my rules:

  1. Fabric — Structured fabrics are usually best! Clingy fabrics will usually reveal more of an outline of my ilesotomy than I would be comfortable with. But, it is possible for me to find something in a jersey knit or other clingy fabric if it appears that it will be looser around my waist, or the fabric is criss-crossed, wrapped or behaves in a way that gives some structure and weight. Patterns are a plus, particularly on any thing closer cut; they provide a visual distraction and make any outline of my ileostomy less obvious.  Flowy materials are great with a-line skirts or dresses, as long as they aren’t see through and don’t cling too much.
  2. Fit — For pants, I prefer a fit that sits just below or at my natural waistline.  As I’ve mentioned before, ultra-low rise usually do not work well on me. You know how stores come up with cute names for the different cuts of their pants? Anything with “modern” in the name, and I need to run the opposite direction since they are inevitably tight and oh so low! In addition, I find that pants with belt-loops work better on me, and ones that are shaped with an almost half-moon shape (I think they are called contour waistline) are not my friend.
  3. Flair — With dresses, A-line or non-body hugging sheaths are my go-to options. I do a love a high-waisted pencil skirt. Was I born in the wrong decade (or century)?
  4. Color — I find dark colors or vibrant patterns seem to work well. As much as I would like to get over my fear of wearing white pants, I doubt that will happen any time soon! I love color though, so often find that I add a pop of color through scarves, jewelry or a top layer (shrugs, sweaters, jackets).
  5. Layers — I tend to layer a tank top  under whatever I am wearing since it helps compress everything and makes me feel more confident that I will not flash the world if my shirt rides up when I am picking up one of my children. I often think about layers, and would consider wearing something tight if it could be balanced out with a bulkier layer. For example, I would wear leggings with a cute, clingy tunic/short dress as long as I could also wear a sweater on top.

That’s my list for now! What do you look for when shopping for clothes?

Mommy Mojo & Odd Questions

Wow….I’ve been so bad about checking in! But, I hope you understand and I do appreciate those of you who have contacted me to see if I’m okay. The very good news is that our baby boy and girl were born in early February. They are doing great, and our 4-year-old son is also adjusting to life as a big brother. We are so lucky that all went smoothly and the twins are both healthy and growing well. Plus, they are so darned cute. 🙂

It’s pretty busy and hectic though. Don’t get me wrong…I know how incredibly lucky we are to have this gorgeous family and I am eternally grateful. But, I am finding it a challenge to maintain my mommy mojo all the time! The lack of sleep of course is potent and it is very challenging to not really have a moment to myself. But we are doing well and it’s incredibly exciting. I will attempt to return to this blog….but please forgive any delays.

And now for a tangent……

As you know, we worked with a surrogate who helped to carry our (they are genetically ours) babies into the world.  She is such an amazing person. Throughout this process I found people would ask the oddest and also very personal questions about surrogacy. It reminds me of when I first had the ileostomy surgery and the bizarre and very personal questions that I would be asked by co-workers and acquaintances. I usually just try to respond as honestly as possible, but I never cease to be amazed at the chutzpah people have to ask these questions! Sometimes you just have to laugh! I bet we’ve all endured those odd questions.


Let’s Get Physical….or How Lycra Can be Your Friend

Knowing that I’ve considered joining a gym for some time now, my wonderful husband got me a one month gym membership for my birthday so I could try a “test run.” He knows me well enough to sense I would freak out if he bought a year membership as a surprise.  I would have said things like “But I’m not sure” and “Do I have time?” Yet, for a month, well….I would give it a shot.

I’m totally digging it, and have since joined for good. Of course there is the ever-present issue of when I will go. But at least for now I am trying to go once a week, usually on the weekend. Also, as a bonus for new members, I get two free sessions with a personal trainer. I’m still achy from the session four days ago.

Being a total novice to the gym I had to figure out what the heck to wear. I wanted something comfortable, non-restricting, and also not super tight against my ileostomy. The first time I went to take a class, I had NOTHING appropriate to wear and ended up wearing loose fitting lounge/sweat pants and a tee shirt. It worked but wasn’t quite right.

I tried on some different pants, and ended up getting some Adidas capris (like these, but not plus size…not that there is anything wrong with being plus size). I got them at an outlet, so the price was right. I liked these since they are not super low rise and they are loose enough. It’s really amazing how low-rise some of these work out pants are!

These pants worked well, but I needed at least one other pair of, well, something. I then stepped into Lucy and splurged on some training pants. The sales person encouraged me to try these on (regardless of my fear of the tight fit), and wow! They are super comfortable and, despite being form fitting, they are high enough that I didn’t feel self conscious about my ileostomy as long as I have a longer shirt on top. I ended up buying a shirt from them too. The actual shirt is longer than pictured here. It worked out great! And I love the feeling of lycra holding in my ileostomy. I don’t even think about it while I’m working out, or taking a class (Zumba, anyone?)

Anyways, I’m optimistic I can stick to it and start feeling stronger. Having clothes that I feel confident in certainly make going to the gym more appealing. What do you work out in?

Random thoughts on a random day….

A few random thoughts:

  • Please say it, ain’t so! I hope neon does not come back in fashion. I can admit it! I owned a fluorescent green sweatshirt in the 80’s. (Does it count that I was in 7th grade at the time?) I wore it with my phone cord belt! And I even had an asymmetrical haircut. Anyways, those colors weren’t flattering then and they certainly won’t be flattering now.
  • Check out the Ostomy Lifestyle Underwear and Swimwear Show. I wish I could attend this!! How wonderful! The model interviews are great. Kudos to them for participating in this.
  • Here’s something funny….Gmale. Watch it for a good laugh (and the accurate yet creepy ending).

Like I said….random! Do you have any random thoughts for the day?


So, I just got back from a trip to the beach. Yay! Although in reality there are limited opportunities for rest and relaxation when on vacation with a 3.5 year old, it was a great trip and wonderful for us to get away.

One evening as we were walking back from dinner, I was able to take a detour for some ice cream while my husband and son headed to the hotel. Although I was on a mission for butter pecan ice cream (yes, I know people either love or hate that flavor–I love it!) a shirt on a sale rack outside a store caught my eye. I was looking for something to wear to the dinner in lieu of a ropes-course-extravaganza, but realized I had little to wear. I thought a nice blouse with some black slacks would do the trick, but don’t really have many “going out” clothes so was on the hunt. Plus I’m attending a wedding in a few months and needed an appropriate dress. So, I meandered into the store and started picking up items to try on.

The store I went to was White House Black Market. This is not a store I’ve had much luck with previously, and I do find their prices a bit high. But I was really drawn to the clothes they were showing. Normally I would walk into a store like this, try on one or two things, shrug my shoulders thinking nothing fit, and leave feeling dejected. Something unusual happened though. A salesperson actually helped me!

Of course I realize she was fueled by the power of commission, but she pulled in all sorts of different clothes to try on, shoes to try on with the outfits, jewelry, the works… Usually this kind of attention, when not done with your best interest at heart, is annoying. Yet she was really good at what she was doing, seemed to be having fun, and appeared to be truly trying to help me. Amazing!

This is where it gets interesting. I tried on many things in my usual size. The cut of their dresses was flattering, but there were still parts that didn’t feel quite right. I fell in love with a particular dress in my usual size, but the salesperson insisted that I  try on a size smaller. I did just that and could see how it hugged my body better. I felt more “aware” of it in the smaller size, but it actually fit me instead of just sitting on top of me. When I questioned the fit, she said “that is how it is supposed to fit.” I realized she was right.

I am still prone to wear clothing that is too big. Self-conscious about my cleavage in high school and college, I practically lived in baggy t-shirts.  And then, with the ileostomy, my desire to hide behind clothes multiplied. It was only about five years ago that I really started to wear my correct size (or so I thought). But, as this experience showed me, I still veer towards wanting things to feel ‘loose.’ I really don’t want to be one of those women you look at and wonder how long the seams on an outfit will last! And I have the fear that my ileostomy will show. Yet, I clearly need to wear clothing that fits my body and is flattering.

I bought the dress, in the smaller size, and also bought the cute cranberry shrug to go with it. The awesome a-line skirt really works well and the belt on the dress hits just the top part of my ileostomy. I also bought this blouse for my “what-do-I-wear-to-dinner” mission. It looks great with the sleeves worn up on the shoulders, by the way, and I didn’t even realize it was supposed to be worn off the shoulders until I found this picture of it online.

A sidenote….at one point I wanted to show the salesperson that a particular skirt was too big. I must have been so comfortable with her that I totally forgot what would happen was I lifted the blouse up a bit to show her my waistline. Sure enough, I flashed her my ileostomy. Just the top part that was peaking above my waistband, but that is enough! I sort of froze for a moment, lowered my shirt, and then just continued on with what I was saying. She gave me a quizzical look, but that was that. It jolted me out of the feeling of playing dress up. Oh well.

At any rate, I ended up staying way too much time in that store and I never got that butter pecan ice cream that night. It was a great experience since it reminded me that I shouldn’t be shy about making sure the clothes fit my body. I guess sometimes it is good to get our your comfort zone to try to find what really works. It really helped to have an outside opinion to give me the proverbial wake-up slap on my cheek. Now I need to revisit my closet and see if I can identify the way-to-big clothes that I know are lurking in there.

Oh yeah…I got that butter pecan ice cream the next day. Yum!

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!?

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!