How to Help Ostomates Overcome Fear and Isolation?

I've had an ileostomy for 5 1/2 years. I've had embarrassing accidents too, but agree with the person who said as you get older, less bothers you. I'm 67 and am in a pool 5 days a week for water aerobics and socializing. I've traveled all over the world. Always have supplies with me and extra clothes in the car or carry-on bag. This is my life, and after the health scare that brought me to my ileostomy, I intend to live my life fully.

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.

If it was advertising for a hearing aid company, it is a conflict of interest at UOAA, hospital, or a doctor's office. You need an inspiration to get moving. Only you can do it. Start by walking, longer and longer. Drive to an overnight location with everything you need in the car. Have a blast and get your mojo going. Add longer trips and finally, try flying.

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.

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

My Ostomy Journey: LeeAnne | Hollister

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

Nope, never said I ran the ad in that type of magazine.

The mag itself is all about deaf people. I'm sure hearing aid companies ran ads in these rags.

But I ran them for finding deaf people with IBD, not hearing aids.

Just a small ad in the back of the magazine.

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)😄.

Hi Doe1,

That's interesting, as I've not met an ostomy nurse yet that was aware of this site. Hopefully, the word is getting out!

;O)

That... wasn't a leak...

It was Mt. Fuji erupting. 😉...

You got your buzz on. Good for you.

😂

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.

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.

Hey Jersey neighbor, I was just trying to be a little humorous using the word “opinion” about a dozen times in my silly reply. I love Bob's stuff and, certainly, almost everything from the "Trenton Makes, The World Takes" state.

Thanks, Warrior,

Mike

I'm a fan, Mike. No worries.

You overkilled that word "opinion." It was fine. Wordplay. But I admit, he had me at "really." I'm not the sharpest knife in the drawer.

Mamma said there'd be days like this, my mamma said.

Thanks for clarifying. All good.

I must be getting a little senile... or did someone change the title of my topic? Didn't I title this one "A funny thing happened bla, bla, bla..." or something like that? And now it's "How to Help Ostomates Overcome Fear and Isolation?" I know I'd never use a boring title like that. What gives?

;O)

You are the first person I've heard of that had nephrostomy tubes. My nephrostomy tube was horrible. Every breath I took was like having been stabbed in the back. I had 3 different surgeons, and they just couldn't get it to stay in place. I had it for several weeks until they could redirect and repair my ureter after a huge kidney stone.

Kudos to you for your resilience and attitude. May God continue to bless you.

You... are... becoming... senile, bro. 😆

(Hey administrator... thanks. It's working.)

Ugh! Family... it's way overrated!

;O)

I am one of those people. My ileostomy has given me crippling anxiety. I dread taking a shower, bag changes, etc. My health and fear have overtaken my life.

I'm 3 1/2 years out from a total colectomy with a permanent end ileostomy. I've had a lot of complications, and anxiety is ever-present. Not just over my ileostomy but all health-related issues. I would suggest anyone who has this surgery go to counseling. It's a major life change.

I was directed to this site while still in the hospital by my Ostomy/Wound nurse, and later it was suggested by my provincially provided home nurse as I also suffered from crippling anxiety and depression for the first and only time in my life.

It was the ostomy veterans from this site who got out and lived that inspired me to get on with things.

I have since had a reversal, but I can attest that I still have the ostomy stuck in my head occasionally.

I am a newer ostomate. I have had my colostomy for 8 months now. Although I did not have emergency surgery, I was told it was stoma or death. This was my worst-case scenario. If not for my loved ones, I would gladly have chosen death. I never reached out to cancer groups. I ignored the people the hospital and cancer care tried to link me up with. I followed some people with ostomies on social media, but could not understand how they could be so public about it. If it wasn't for the pain I am in, both physically and emotionally, I probably never would have joined something like this. I guess I finally realized that this is my life, and I made a choice to keep living, so I need to join a community and learn to heal...because being sad and suffering silently is no quality of life...thank you. Thank you for being here and wanting to reach out to those that have fear and anxiety and body hatred.

If you are afraid to go places because of leaks and blowouts, I feel that something is not fitting properly. If everything works right, you should not have these problems. If you are having these problems, talk to a Stoma Nurse, call Hollister and the other suppliers, and get their feedback. And call your supplier. Your pouch should fit so that you would not be afraid of leaking problems. One item that is most important is a belt.

You should not fear changing your pouch. Do you change it in the morning after all your food has passed through? If not, make this change and it should be easier. I take showers with my Hollister bag on and it has never failed. Maybe you need to talk with someone to help you through this. God bless you.

I agree with the notion that if just one famous person spoke openly and confidently about their stoma, it would really make people talk. I was sad that the guy who played Frasier's dad - Marty (John Mahoney) didn't talk freely about having his stoma up until a few years before he died and was out of the public eye. He would have made a good ambassador.

Matthew Perry's temporary stoma experience was described woefully, which didn't help. Just one big name to get the conversation going would really help, I think.

Make people talk about what? 99% of people with no ostomy have no clue what it is or how to live with one. Those who do have an ostomy already know what's going on living with one. We don't need a famous person to say it's cool to have an ostomy or to say, "Look at me surviving with this condition." There are hundreds of thousands of people out there showing each and every one of us that having an ostomy is okay. Most of us have been knocked down in the dirt, gotten up, and brushed ourselves off. If that's not inspiring, no celebrity can make it any better.

Make someone in the public eye show that living with a stoma is possible! When a UK celeb got vaginal cancer, she talked about the real details of the symptoms she had - no shying away from it. She urged women to get smear tests, and thousands of young women did! My sister has Parkinson's disease, and she said to me, "If M.J. Fox can deal with it, then so can I."

So she could only deal with it since MJ Fox does? I'm pretty sure she is dealing with it because she must, not because someone else does. An ostomy isn't a cool trend-setting thing that anyone wants; it's what we have to have in order to survive.

He sets a great example - let's just leave it at that.