Tuesday, June 18, 2013

Setting the record straight

Even at Yale School of Medicine, sometimes we have supposed expert lecturers say things that aren't correct. Or, alternately, present important material inapropriately.

Today in one of our Human Sexuality classes on sexuality and disability/illness, our professor stated that people with an ostomy smell bad, which can be a barrier to sex, and this can potentially be addressed with cologne. He also stated that people with an ileostomy can wear a stoma cap to reduce the size of the bag.


Wait, no, not "sigh...". This type of perpetuation of negative stereotypes (smelly, undesirable) is infuriating!

A cap?
First off, the misunderstanding of who wears a stoma cap is just silly and only communicates the lack of familiarity with ostomy issues more than anything else.

Anyone with a good understanding of the logistics of an ileostomy versus a colostomy would know that in an ileostomy a stoma cap generally really won't work well because of the nature of the output, which is more continuous than a colostomy which may be managed through means like irrigation. For many people with an ileostomy, a stoma cap would probably cause more problems than it was worth by puffing up like a small balloon if used for more than a very short period of time. For intimacy and activities like swimming, many people prefer to change to a mini-bag which is larger than stoma cap but smaller than a full size bag.

Like roses...
Now onto the issue of smell. In the break between hours of the class I approached the professor about why this sort of statement only reenforced a negative stereotype which might be passed along and negatively impact patients. I also offered up that what he didn't know was that most of my classmates know that I have an ileostomy. His response was that he was not wrong, and that I am a one of a kind exception to the rule, and that this was my personal sensitivity and that I was "blowing it out of proportion" it into an issue with him that wasn't real. He then repeated multiple times that from his own experience as a doctor he has seen only people who smell bad and have had resulting problems with relationships.

Let's address the facts here and clear this whole thing up.

These days, nearly all ostomy supplies are manufactured so as to be impermeable to smells when adhered correctly. When one of the guys farts in the car after a burrito stop, it's convenient to be able to deny any responsibility because it truly couldn't have been me. You can't smell mine because they are in a contained bag! So there! ha!

Leakages are still possible, but with some help from an ostomy nurse on finding the right combination of adhesives, can be very rare to the point of not being a major concern. Even with training intensively 6-7 days a week, and racing, and ahem... having an active sex life... I only need to change my appliance 2 times a week, and haven't had a leak in about 3 years (knock on wood!!!).

If I smell bad it's not because of my ostomy. It's because I sweat a lot and sometimes am a gross dude who doesn't shower after riding my bike. Sorry, world.

Of course, there will be lots of people in the world who smell bad. Some of them have bags, most don't. Some other people just have poor hygeine. And, some people with an ostomy have issues with appliances due to skin folds, adhesive allergies, or diminished eyesight or dexterity.

As ostomates, friends and healthcare providers who may encounter people with an ostomy, it is important to differentiate between what is a fear and what is an inevitable reality.

A person with an ostomy might FEAR odors, especially if they are new to having one or have recently had a leak which has made them trust their appliance less.

A person with an ostomy does NOT smell bad and have leakages prohibitive of having sex as a part of their UNAVOIDABLE FUTURE  You can solve these problems in most cases, with an appropriate referal and education to a GOOD ostomy nurse or other community experts.

The issue with intimacy, for somebody with no unaddressed appliance issues, is FEAR, not a bad smell itself. Putting on cologne might help with feelings of being self concious, but won't be the cure to a leaky appliance. And, if your appliance isn't leaky, and you've taken a shower recently, you probably don't smell.

Perpetuating negative stereotypes doesn't help anyone. It does people with an ostomy and their providers, who might help solve the problem if they knew it wasn't to be expected(!), a disservice.

Wednesday, June 12, 2013

Spandex bike shorts! Wear them with an ostomy? Yes!!!

Twice this week, bicycle shorts choices with an ostomy has come up.

1. Can you actually wear tight clothes, even skin tight spandex with an ostomy? 
Yes, absolutely! The thing I've learned is that people really aren't paying that much attention to you. They are too hung up on their own appearance to notice a small ring on your abdomen. Most people area a little bit lumpy. And, I'm sure you've noticed some people wearing very tight clothing on the street who don't have chiseled bodies. It doesn't matter if you're thin, thick, or somewhere in between. It's just a little ring, or maybe a small bulge under your clothes or skin tight clothes. And, really, that's all it is.  Can you notice it in the last of the photos below? Probably, if you look really closely. You can definately see it in the correct lighting if I am standing upright, off the bike, and am wearing a skinsuit for time trials. Personally, I'm fine with telling people what it is if they ask, and most of the time people's responses are positive ones. Especially in the setting of competition, I think people have respect for those who have overcome challenges to get there. But, even without a competitive setting, I've stopped caring.
Try it. Wear bike shorts. Nobody is looking. And, if they are, it's your good looking bike or tight clothing, and not your ostomy.

Most people are shocked to find out that I have an ostomy. And, I've never had somebody see me in spandex and figure it out. Even teammates who are oncology nurses haven't known before I told them (or walked around with my shirt off).

2. What kind of bike shorts are best? 
There are really two types of bike shorts. One's with a waist band, and bib shorts with shoulder straps and no waist band. Personally, I swear by bib shorts because they keep everything tucked in place without any additional support garments/belts/whatnot, and don't have elastic constricting my bag anywhere. Pretty simple reasoning, yes?
At first I was afraid to wear bib shorts because I was afraid it would be too tight around the appliance itself. I started biking again after surgery wearing standard shorts and found it was ok for a short time, but after a longer or harder effort it would start to tug on my bag, or if I had any output while biking it would all collect above the elastic line and become both an unsightly bulge and uncomfortable.

Here's how it works, in photo blog format.

3. How do I buy bike shorts? 
It really comes down to a matter of preference.
The ones below are team issue shorts made by champion systems. Some of my other favorite brands for high quality shorts are Voler, Castelli, and Giordana. I recommend you trying them on at a reputable, bicycle-specific store (not a big multisport, box store like REI, City Sports, or Dick's sporting goods.) Ask the sales people about the sizing. They should feel snug enough to keep everything in place but not so tight that you can't get them on. As a point of reference, I usually wear a 28 or 30 waist jeans around my hips, and have a 25 inch natural waist. I wear a small or extra small in most european brands. In larger cut american brands (Hincape) I wear an XXS.

PS- Sorry for the fuzzy iphone photos and the split mirror!!! It's what I've got to work with!
PPS - Note in the corner, the evidence that I do religiously wear zinc sunblock, as should you! Especially if you've ever been on an immune modifying drug, which can increase your risk of cancer!

Monday, June 10, 2013

4 years of gutlessness!

I just realized that this week is my 4 year anniversary of being gutless (of course, that gets a bit fuzzy with the sheer number of surgeries involved! The final ileostomy surgery was at the beginning of July).

Four years ago this past May I let a good friend convince me to go to the ER because I looked "really awful", and I didn't come out of the hospital for more than a few days till nearly September and numerous surgeries later. At 4 years, I think I'm doing pretty darned well. It's amazing to think of how relatively short a time it's been and how much has happened since then. Life continues onwards and upwards, even if there are a few stumbles along the way.

This is what I did last week to celebrate. Track racing! Sadly, I was looking away from the camera.