How To Help Ostomates Overcome Fear And Isolation?

Question

I had to go to my local bloodwork lab today for a routine draw. I reviewed the lab to be done with the gal at the counter and then went back to the stickler's room. The stickler came in and we started chatting. She asked if I was on Stelara and I said no, I'm on Humira, which was what I was doing there, checking my residual maintenance level of Humira still in my bloodstream. She said she was familiar with it and I asked why. She said she has Crohn's and had been on it for a bit before switching to Stelara, and asked if I had Crohn's. I told her I did have it, but after they yanked all my guts out there isn't much left to be diseased, and so far it hasn't come back. She then asked if I had an ostomy, and I said yes. She winced and said she had a temporary ostomy for 8 months or so between two bowel operations and said it was awful. She asked me how I do it, and I said do what? And she said chance going out with an ostomy. I was a bit confused, so I asked her what she meant. She told me that during the 8 months she had her ostomy she NEVER left the house because she was so scared she'd have a leak! She said that the few times she had to leave the house she packed a suitcase full of supplies, towels, etc., and was a nervous wreck. I told her that after you've had an ostomy for a while and it's permanent you eventually get over any fears of springing a leak and just say f*&k it, and get on with your life. I encouraged her to look for online support when in situations like that, but she dismissed it. I get it, some people aren't 'online' people and some are. So she drew my blood and I was on my way.
But as I was driving away I started to wonder just how many ostomates are out there right now living with the same fear, petrified of having an accident and being embarrassed, such that the fear literally dominates their life. And I wondered how to reach those folks, but came up empty. The best way would be for their doctors to recommend they get on forums like this one and talk to folks with similar problems, but many folks have a fear of online anything. And with all the scammers and idiots out there, I can't say I blame them. Also, many docs don't encourage patients to look stuff up online, for a whole host of reasons, some good and some not.
So my question to you guys is, how do we help these folks? How do we share our experiences with them so they better understand they're not an island unto themselves, and that there's lots of people wanting to help them. I'd like to hear your thoughts on this subject, it's important!
;O)

Doe1mama · Answer

It was my husband's ostomy nurse who directed us to this online support group. It was one of the best things we did.
So, hopefully, hospital's ostomy nurses are doing this everywhere. Like she said, as nurses, we certainly know how to work with an ostomy, but these people live it every day. And she was so right. They helped us with numerous issues and fears we had.

yayas6gc · Answer

Here's my story of a leak. I went out on a date for the first time with “Joe.” We met in a very popular attraction downtown at a wine and cigar bar. We introduced ourselves and decided to sit outside on the brick-paved patio. We got to talking, and Joe told me he had COPD. I told him I wear a bag, and we both continued on with our getting-to-know-you discussion. I'm not a drinker, and so I wasn't used to the wine we were having. The more glasses of wine we had, the better of a time I was having. The second bottle arrived, and we had about finished that one when I thought I had better visit the restroom. Now, by this time of the date, you might say I was a tad tipsy. 🥴 I stood up, and my bag blew open with half-digested wine splashing on everything. People's shoes, clothes, tables, and of course, I was soaked. Well, being a tad tipsy, I threw out a $20 on the table and stumbled my way over the bricks (having flip-flops on was a huge disadvantage), making a tad tipsy person into a shoe-slipping, falling-off, walk across the street to my car and wet clothes (ick) very precarious. It was by then 5:30, and people were backed up looking for a place to park. Oh wait, there's a stumbling wet-clothed person getting into her car. Gadzooks. I opened the trunk first to get my spare towels out. One was going across the seat and another across my lap. Oivay. I rolled down the window, backed up very carefully, and navigated my way out of a busy, brick street. I know, I know, I know I shouldn't have driven. I'm a grandmother, I know. But, I did and made it home safely with my head hanging out the window and my cruise control on. Eeek. The next day, my first-time date called and asked if he could bring over a pizza to continue our interrupted date. He was a peach of a man. It didn't work out with us, but I'll never forget his kindness to me in a terribly messed up situation. By the way, he did mention he should have gotten me a cab.
What I'm trying to convey is to go out and live your life. Accidents happen. Be prepared with a spare change and hold your head up high. The end.

Justbreathe · Answer

Mortified is the only word that comes to my mind - followed by “please dear God assure me I didn't give Joe my phone number or my last name”…..purple teeth are the worst! JB

iMacG5 · Answer

Hey Bob, rare as it may seem, I think I need to disagree with your reply to Alex's writing. His opinion “doesn't mean squat.” You agreed. My opinion is his opinion means something more than “squat” even though he's just one in several billion. So are you and so am I. Certainly, his opinion has meaning to him just as your opinion of his opinion has meaning to you. Bottom line is you agreed with Alex, though his opinion, in your opinion, like everyone else's opinions in your opinion, doesn't mean squat. That's just my opinion, and if you disagree, I'll certainly disagree with your opinion.
Any opinions on how I could waste time more efficiently?
Mike

warrior · Answer

Write a letter in braille? Ha ha.
(A few hours later)...
At first, I would agree with you about how w30bob wrote that sentence out, but the word that trips me is "really." Had he not said really, I think it would have been less confusing. More accurate.
Bob is articulate. He knows what he is saying. What he wanted stressed. I had to read it a few times. Alex said his opinion doesn't mean squat. And I believe simply put, Bob felt it mattered. Everyone's squat mattered. No foul. No crime. No assaults on intelligence.
Interpretation can go either way if not having what matters in sight. (Whoa, I gotta write that down somewhere)😄.

warrior · Answer

That... wasn't a leak...
It was Mt. Fuji erupting. 😉...
You got your buzz on. Good for you.

AlexT · Answer

😂

Winnie The Pooh · Answer

Well, if the rumors are true, there may be an ostomy-enhanced person that could go public and make a difference - Kate Middleton, Princess/Countess/Marchioness of whatever.
Right now the general public's idea of ostomy is yuck! - just like mine was before it saved me from pushing up the daisies.
Having a very public (and liked) figure like her with a stoma could be game-changing.
My own attitude over 5 years has gone from worrying about going anywhere I might sweat and have it open, to not worrying because it doesn't, to thinking well if it does explode they'll be more upset than I will.

Hisbiscus · Answer

I went into this ileostomy thing the opposite. I was happy and working. I bought support garments to feel comfortable. I had a bathroom bag with everything I needed to empty and a tiny emergency kit. I wore the thing with pride. Then at another job and the last 3 years of working, I was getting bullied for it. My bathroom bags were gotten into and gloves even stolen once. Not only that, but after my hernia surgery, my stoma went flat and my world collapsed. So I'm kind of backward. Happy at first and uncomfortable now. I told my doctor I will not go back to work ever after being bullied on jobs.

w30bob · Answer

Ugh! Family... it's way overrated!
;O)

How to Help Ostomates Overcome Fear and Isolation?

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