My First Ostomy Support Group

Today marked my first ostomy support group with the Ostomy Support Group of Central Indiana. While I was a bit hesitant to go, I couldn’t wait to meet more people in my area and in my age group that I would have something in common with. Unfortunately, I was a bit mistaken, but had a wonderful time anyway.

The group consisted of about 20 ostomates and their significant others or caretakers participating in the meeting. So many had driven a much longer road that I, and with a lot more bumps. Many were multi-year ostomates, some with more than one bouts with cancer. The most experienced ostomate was a woman who had an ostomy for over 47 years.

What we lacked in generational commonality, we made up for with funny anecdotes and a common bond regarding our love/hate relationships with our stomas. For example there was a woman in her 60’s who stated she’d be divorced from two men named Tom and Dick. This is why she named her stoma “Harry” cause this asshole isn’t going nowhere. What I took away from the meeting was many things, but I continue to be drawn to a want that erases the social stigma of having any type of ostomy.

We discussed Awestomy! and got a lot of positive feedback and interest in our upcoming products which made us swell up with a lot of pride.

I learned so much at this meeting and met so many wonderful people, here were the most important things I took away.

I Don’t Need Ostomy Support

Perhaps not, many people with ostomies can get along just fine and lead productive lives very quickly. I’ve been lucky enough to have wonderful health since my operation and mostly wanted to go for a social aspect. What you may not understand is some ostomy patients may need you more than you need them. For what it’s worth, many have a hard time coping mentally with the operation. Any support you could give those patients with a positive smile and a true understanding for what they’re going through, the more lives you’re going to touch.

Learn About What’s New & Surrounding Events

The meeting was ran by two Wound & Ostomy Care nurses who told about improvements in ostomy, new products, and upcoming events for the group. This was worth the trip to the meeting alone. The next meeting on October 14th will be a vendor fair where company representatives will come to show their products. We plan to be there showing off our products! 🙂

Erase The Social Stigma

Look, I get it. Ostomies are common fodder for comedic material. I’m just as guilty of making fun of it previous to my procedure. We put on our pants the same as anyone else, only when we do we have a shit or piss bag attached to our bodies (Who am I, Bruce Dickinson (0:53 mark)?). Strength is in numbers, the more people we can get talking about this, the more acceptable is will become. I encourage you to speak publicly about your ostomy, get connected with online or in person groups, and help educate people.

Support Groups Aren’t Trying To Steal Patients

The support group I went to was held at St. Vincent Hospital in Indianapolis, IN. In talking with the nurses, their biggest frustrations are that their colleagues at other hospitals aren’t promoting the group. This has nothing to do with hospital allegience, it has to do with patients helping patients. I encourage any Indianapolis gastro doctor, colon & rectal surgeon, ostomy nurse, and ostomy patient to promote your nearby support group.

Help Those Less Fortunate Than You

This one really hit me. It’s no secret that we are in a health crisis in our country. With Obamacare almost two years away (this isn’t a political debate), and I’m certain many will still abstain from purchasing coverage there is a huge amount of people with no insurance. Some folks brought ostomy supplies that they weren’t able to use because the nurses stated that many ostomy patients are knocking on their door hoping to get relief from the high cost of their health products. Even those with insurance, from ostomy supplies, to medication, to doctor appointments it can be tough to afford it all. If you have any extra supplies, I’d encourage them to give to a connected ostomy nurse, non-profit ostomy organization, or hospital.

In summary

I can’t wait to go to my next meeting. I plan to help the group with their social media efforts and have already made some new ostomate friends. Get involved, advocate, ostomates unite!

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About Jason

Computer nerd, lover of all random humor. Colostomy surgery in March of 2012. Exuding swagger and spreading awestomy awareness. King of ostomy underwear with pockets and ostomy wraps with pockets.

7 Responses to “My First Ostomy Support Group”

  1. Amy August 13, 2012 at 2:10 pm #

    Well writing! Would you mind if I reprinted this in our October newsletter? Also, are you interested in discussing partnership with us? Please drop me an email and I will go into more detail.

  2. Susie Fountain August 13, 2012 at 6:58 pm #

    How did you find the meeting and date?Only one I have ever know about is at Methodist hospital downtown where I had ileostomy 37 years ago.

  3. Charis Kirk August 14, 2012 at 2:53 am #

    I love going to my UOAA and CCFA meetings 🙂 And being involved with one as more than just an attendee is awesome!

  4. jrmcintosh August 16, 2012 at 12:02 am #

    Susie,

    I did a search for Ostomy Support Group in Indiana and the UOAA website came up with a listing of groups in Indiana. I called the listed contact and got information on the meeting. They are the 2nd Sunday of every month at St. Vincent. If you call Gene Alvarez (the contact) he will get your information and send you a newsletter. The next meeting is Oct. 14th.

  5. jrmcintosh August 16, 2012 at 12:03 am #

    Amy,

    Sorry, we’re just seeing your comment, but received your email. We’ll respond back to you soon!

  6. jrmcintosh August 16, 2012 at 12:05 am #

    Yep, we’re heading up their social media department. 🙂

    My girlfriend and I were the only ones there under 50 (not that that’s a bad thing). But we need to get the word out for the younger crowd here in Indiana and the midwest!

  7. debi J widmeyer June 15, 2017 at 2:38 pm #

    I have numerous urostomy supplies. I would like to donate them. I’m from ft.wayne in. Is there a organization around here that take unused products?

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