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.


  1. What is the name of the Professor?

    1. Hey Doug,
      After thinking about it, I think in this case sharing the professor's name wouldn't have any positive effect. While I did share my previous GI doc's name, I did so because I thought her lack of listening skills made her dangerous to other patients. In this case, if you are a Yale SOM student, you will have this professor and probably know who he is already. If not, then youd be unlikely to encounter him. Also, the internet is sneaky, and it would probably not end up in a productive conversation if comments from this community were to start showing up in his inbox.

  2. Please report the professor to the Dean! No one EVER smelled my bag contents and I only got a whiff if there was a breach - and only I was able to smell it! I actually asked folks to sniff me to check and even when I smelled a breach, no one else could!

  3. Wow! I am amazed! I had leakage problems due to allergy to to adhesives and even then was aware and able to not smell! On top of which got pregnant and carried s child full term in a perfectly healthy pregnancy with my bag and never had any issues with sex and feeling unattractive. We all make due with the cards were handed and for someone in the medical AND teaching arena to make such rude blanket statements is is infuriating! No wonder so many are scared of the bag!! Sheesh!

  4. Exactly, Liza. This is why people are so afraid of getting an ostomy, even when it may be life saving or dramatically life improving! It's disturbing that medical professionals continue to perpetuate these myths. Glad to hear that your pregnancy went well!

  5. Thanks for sharing all these, I know all these needs lots of gut.thanks for simply motivating others to live normal life. If anyone is really fighting with that bag stuck to your belly then he must try the Ostomy Lingerie that are specially designed to make their life normal and comfortable.