How to Help Ostomates Overcome Fear and Isolation?

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715
w30bob
May 10, 2024 11:56 pm

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)

warrior
May 11, 2024 12:39 am

Great post, brother.

Indeed, the word is getting out though. Have you seen all the newbies posting stuff? It took a while, but I'm guessing these same newbies were quietly sitting on our sidelines here when they decided to jump in.

Sitting patiently, wondering should I... or shouldn't I? Join in.

Getting the word out from doctors is risky for them. I think flyers left in their office or health care office would help.

When I lost my hearing, I took out an ad in certain hearing loss magazines looking for people with IBD and hearing loss.

There, I found a bunch of people 20 years ago writing to me.

Yeah, a bit expensive. A bit extreme... I am in touch with these people today, and I formed a network online.

I also went to a Crohn's Colitis Foundation summer fest with flyers regarding hearing loss and IBD. The woman in charge told me I can't hand them out.

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,973 members. Get inside and you will see.

It's not all about ostomy. Everything is being discussed.

Many come here for advice or to give advice 🗣, others have found good friends 🤗, and there are also those who have found love 💓. Most of all, people are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

Kas
May 11, 2024 1:00 am

Bob,

I tell all of my ostomy patients about this site. I explain that we don't have to use our actual names, so there's no worry about being embarrassed. I do know that some of them have checked out this site and have hopefully found it as valuable for information and a sense of community as I have. It's sad to think there are folks that are basically disconnected from living their lives due to their ostomies and fear.

Our group should be introduced to folks when they're still in the hospital.

When you come up with an idea, be sure to share it!

Kas
May 11, 2024 1:02 am
Reply to warrior

Wonder why she wouldn't let you hand out the flyers when the goal is to help - not like you were selling stuff.

DexieB
May 11, 2024 2:28 am

My wound nurses encouraged me to sign up for this site ❤️. I had some great nurses who realized the importance of support. I have to say I was hesitant at first because of what the site is called, it almost seemed like a dating site… but not sorry I signed up because it has been the best 😊

 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
warrior
May 11, 2024 2:57 am
Reply to Kas

Hi Kas. She didn't believe there was enough evidence to support IBD causes hearing loss, much like the entire medical profession back then. She asked me to leave. I spent money on flyers printed which were never seen.

Now if that were to happen to me today, I can only assume someone would be physically hurt or in jail. I got bitch slapped that day. The woman was the president of that chapter hosting the festival.

I never became a member of the Crohn's Colitis Foundation.

Bill
May 11, 2024 7:51 am

Hello Bob.
Thank you for a great, thought-provoking post.
I feel that we can all do a little bit to make others aware of ostomies and of how they can get support. One way I felt was quite effective was to let the stoma nurses know where I get my own support and how much it has helped. I did this not only by talking to them but leaving them with copies of my books of rhymes on the subject, to leave in their waiting rooms for people to read. 
Another way to raise awareness is to connect with (and educate) anybody and everybody who is vaguely interested, even if they don't have a stoma. The chances are that these people know someone and will pass this information on to a relative, friend or acquaintance who does have one. 
However, this is individual approach is a drop in the ocean. One of the most affective ways of getting the (any) message across is to 'advertise' and 'broadcast' the message in the many forms of media available. I see this is beginning to happen on the TV in the UK. 
I like the subtle approach where the messages are written into the scripts of soaps and films. which can be very popular among those who may feel that they are housebound.
For my part, I have written a few potential sketches concentrating on psychological 'themes' surrounding traumas such as stoma surgery. None of them have yet to be performed live, but who knows, somebody, somewhere, sometime, might think it worth a try to perform them. 
Best wishes

Bill 

Beachboy
May 11, 2024 8:47 am

I'm thinking... Michael J. Fox. He is a tireless and successful advocate for Parkinson's disease.

If a major actor or singer had an ostomy, and went public with it, ostomy awareness would soar. Especially if they established a foundation like Mr. Fox did.

As Bill mentioned, ostomates could be written into soap operas and movies. Imagine... Columbo with a colostomy.

When I was working, I would show my colostomy to curious coworkers. They were dumbfounded that the red little beast in the bag was my intestine. Then they were full of questions. By the time I retired, most everyone in my department was familiar with ostomies.

DebinRI
May 11, 2024 9:40 am

About 6 months after I lost my entire colon and my ileostomy was placed, I posted on Facebook regarding my surgery. None of my friends knew what an ileostomy was; they had to Google it. None of my relatives have gone through this. I had awesome aftercare, but none of my home care nurses encouraged me to find a support group. So, here I am finding this site and all of you wonderful Ostomates. I am 17 months out from my first surgery, but had a blockage requiring emergency surgery. That surgery almost killed me. I found you all here by accident, actually. I could have used this support system way back. I'm still having physical and emotional issues since my most recent surgery. I am so happy to be here! A big thanks to all here! Deb.

Caz67
May 11, 2024 9:59 am

I think 🤔 the best place for the site to be recognized/discovered is where most people's journeys begin: at the hospital. xx

Kas
May 11, 2024 12:02 pm
Reply to warrior

That's such a shame! I hate know-it-all, closed-minded people!

Kas
May 11, 2024 12:04 pm
Reply to DexieB

I found the site by accident but almost didn't check it out because I also thought the name sounded like a dating site! Sure glad I decided to check it out though!

Justbreathe
May 11, 2024 12:36 pm
Reply to Beachboy

T.V. Announcer: For the first time tonight - - - The COLUMBOSTOMY Show…

I am sure it would be a great hit…uhh sorry…a great hit! You know I can't help myself, right?

AlexT
May 11, 2024 4:21 pm

From reading this site over the last 3 years, I'd say about 75% of people with ostomies are petrified of doing anything outside a very basic lifestyle. I'm sure a lot of it has to do with having a temporary one and they are also healing from surgery wounds, etc. By the time they heal, they are getting rid of their ostomy and move on. Other health conditions may prevent others from doing much also. Just my opinion, which usually doesn't mean squat.

w30bob
May 11, 2024 4:45 pm
Reply to AlexT

No one's opinion really means squat, so welcome to the club.  And I hear what you're saying...........but think about the timeline.  She wasn't scared shitless for 8 minutes, or 8 hours or even 8 days.........she didn't want to leave the house for 8 MONTHS!  I go stir-crazy working from home in about a week.  And I CAN and do go out anytime I want.  I can't imagine what it would be like to be imprisioned in your own home for fear of being embarassed or people finding out you have a shitbag.  I DID feel that way for a bit in the beginning, but it was days until I was confident my barrier wouldn't fall off, not MONTHS!  And I also realize I'm not the shy type, so there's that.......but seriously, if there's anyone reading this on this forum who is scared to death to go out in public with your shitbag.........just do it!  No matter what happens it won't be the end of the world!  Tomorrow will still come and be Sunday just the same.   Oh.....and just don't pay any mind to Alex.........his opinion doesn't mean shit........errrr..........anything (for those sensitive to fecal references).

;O)

AlexT
May 11, 2024 7:00 pm
Reply to w30bob

You can read it in people's posts on here that they are in fear of doing anything because of their condition. Most just do what they have to make it through each day, and then you have those that go out and get on with their life. Either way, it's their life to live and for others not to judge. Sitting in the house for months would drive me nuts too, but some are made that way. 🤷‍♂️

Ben38
May 11, 2024 7:10 pm

Can only say what goes on at my own local hospital in the UK. One of the main UK charities, the Ileostomy & Internal Pouch Support Group, has a good working relationship with the ostomy nurses and colorectal doctors at two of the clinics. Every week, members from the charity are there to chat with anyone that needs an ear and give out information leaflets. The charity publishes quarterly news journals, and the ostomy nurses give them out to all new ostomy patients and even give patients who ask a phone number to speak to a stoma buddy, as they're known. I wish there was an easy solution for everyone to accept their stoma, even if only temporary ones, but sadly that's not the case for everyone. There's always going to be some, whatever anyone says to them, that are scared to go out of the house. Even if they don't have an ostomy, I know someone with IBS who hasn't been out of the house except for doctor's appointments for five years from fear of having accidents. I can understand why they're not going out.

JD
May 12, 2024 3:52 am

My experience was sort of the opposite...ish...

Had colon resection, chemo, radiation, more chemo, more radiation. I bought waterproof seat covers because I couldn't always make it home from treatment without accidents. Going anywhere was an exercise in not eating for hours ahead of time and Lomotil and more Lomotil.

Then second colon resection that came with an ileostomy. Took me one bag change and about a week to feel like I had a handle on it and then holy crap, my world opened up. Spicy AF Mexican food? You got it! Gone from home for hours at a time, pish, I got this. Mind you I never left home without my "go bag" for an emergency change and duct tape was used more than once but hey, I could go out.

Third resection, now permanent colostomy, and it took a few weeks (12 hours of surgery this time), but back to feeling comfortable being out and about with a bit of planning.

So yeah, I get my experience is not the same as others - some have it much tougher, some easier, but I suspect many/most??? get to a point where they can manage their ostomy.

To your question, how do we help? I dunno. Have seriously considered reaching out to my doctors/ostomy nurses, etc. and offering to share my experience with any patients. Maybe offer to the hospitals I was in to visit any patients with a new ostomy. Has anyone else done this? Any good/bad experience? Tips/suggestions?

Beachboy
May 12, 2024 8:46 am
Reply to DebinRI

I discovered this website by accident too. This is where I learned to care for my colostomy. My home healthcare nurse taught me how to take a wafer off and stick one on, but the fine details of day-to-day living with an ostomy I learned here.

I would say most ostomates have struggled with the emotional impact an ostomy brought to our lives. I was extremely emotionally fragile for a long time. I just could not discuss my medical "adventure" in any detail... every time I tried... BAM, cue the waterworks. As in flat-out bawling my eyes out. And worst of all... it would take me by surprise. Even after a year post-op, when I thought I was over it.

I'm unsure if I will ever fully recover from the despair I felt, fading away each day in the hospital while no one could figure out why.

Justbreathe
May 12, 2024 10:48 am
Reply to w30bob

“Realizing you are not the shy type” are key words here. Not all are able to walk that path, and those that can may not be able to walk it sporting a belly-bag.

I am not necessarily shy, but I am afraid any major embarrassment would definitely mentally scar me for a very long time and disturb my mental peacefulness. Ask me how I know—it once happened to me.

Being a very analytical person, my daughter says I have “analysis paralysis,” and she is absolutely right! Just saying, not only are we all very different, we all tread on different paths. I would jump on your “not shy” path in a heartbeat if I were mentally able, but I did once experience a major leak in a busy restaurant early on my journey, and it was horrendous. It certainly made me jump to a different path posthaste, and because of this, I have not been able to return to some outings that I may have enjoyed before my ostomy! JB

IGGIE
May 12, 2024 1:31 pm

G'day guys, I would like you to all Google this young lady "Sara Levitt." She is a model and shows her stoma bag on every modeling shoot. This is what's needed, and the fact she is young could help new ostomates. Regards, Iggie

OGA
May 12, 2024 5:11 pm
Reply to Kas

A very good idea that all ostomy patients should be introduced to this site when they're still in the hospital. I lived my life with fear of my ostomies for more than a year until I found this site and a lot of useful information telling me how to deal with my daily problems created by myself.

w30bob
May 12, 2024 5:29 pm
Reply to Justbreathe

Hi Jb,

Yup, that's why I said that... we're all different. What's funny is that the most embarrassing moments in our lives can be very painful when we're young, but you'll find that when you get older those moments tend to flip and become the glue that binds us together, as we find out we weren't the only ones who had such moments, and weren't nearly as alone as we thought we were. Certainly traumatic at the time, but defining nonetheless. In case folks don't know what I mean, now that I'm knocking on the door of being 6 decades old I find when I hang out with my friends, mostly old bikers, farmers, mechanics, and watermen, people certainly not born with silver spoons in their mouths, the conversation always drifts to the past. The coolest things we've done, the stupidest, and always the most embarrassing. In those types of conversations what once made you cringe and hide now elevates you to the top of the heap. People having been through the horrors of life respect and appreciate being embarrassed, humiliated, and still overcoming, as they've all been there themselves. It's a type of camaraderie when everyone in the room can relate to each other's plight, and after a certain point in everyone's life... they can. Of course, you can't know or see that when you're young, so the pain and embarrassment is real, but there's a certain satisfaction you'll feel when you get older when you realize those moments are what made you you. That's all I'll say about it for now, as I don't want to spoil the whole surprise for those who haven't gotten there yet. So don't worry about embarrassing the hell out of yourself... just hose off, towel dry, and get on with it. You'll thank yourself later!

;O)

anyark
May 12, 2024 6:35 pm

Good post & replies. It's sad that so many of the medical profession have no knowledge of the various ostomy support groups. My surgeon had no idea either of what was available. The WOCN I had in the hospital was not very good, so I didn't even ask her. Recently, Chicago Med had a teenager with an ostomy, and they did not do a good job talking about it. They made it very negative, and it could've been so much better and more informative.

There have been some people, on the other board I'm on, who have been brave enough to let us know that they don't leave the house. A number of us tried to work with them. I know some listened and were helped, but I don't know how many. I figured out that how people react to this type of thing really depends on their pre-morbid personality & how they respond to problems in their lives. It really is interesting to look at that.

One of the things I do is freely talk about having an ostomy, and when people start to pity me, I stop them and tell them I'm alive and having a good life. Without it, I probably would not be here anymore. I think it's really important that we educate as many people as possible. You never know who you might help.

I was asked if I would talk with somebody who was having digestive issues in Germany, by a mutual friend. We have written back-and-forth for at least four years now, and she finally had to come back to the United States to get the screwed-up surgeries repaired. The hospital she had been going to was horrific. She has written a number of booklets now that are available on Amazon, which I think are very well done. She is a journalist by profession and an extremely bright woman. If I can figure out a way to put a page on here that has the codes, I will. Yay, I did it – not bad for someone who went through college with a typewriter and carried my books from cave to cave. 😂

Keep advocating and talking about ostomies, and I expect you will find people that you will help.

With peace, Anyark

TerryLT
May 12, 2024 9:03 pm
Reply to Caz67

I agree that it all has to start at the hospital. In my case, I was fortunate to be in a hospital where there was a dedicated 'ostomy and wound care' ward, with really knowledgeable ostomy nurses and an after-care program that was amazing. They also had a mentorship program where, upon discharge, if you wanted it, they would hook you up with a mentor, a volunteer who would be available to you for as long as needed for support. This would be someone who was an ostomate themselves, of course. It was my mentor who suggested I check out a couple of online groups, MAO being one. My whole experience was nothing but positive, and I was always made to feel that having an ostomy would not limit me in any way. I do my best to put the message out there without advertising to everyone I meet that I have an ostomy. There are some I choose to share with and others I don't, but when I do share, I'm clear that it's made my life better, not worse, and that I don't consider myself 'handicapped' or 'disabled'.

Terry

Emad
May 12, 2024 10:11 pm

In my area, there is an ostomy support group that meets once a month. I'm in FL, so the meetings stop in the summer because a lot of people here are snowbirds.

Healthygirl
May 12, 2024 11:39 pm
Reply to warrior

Hi there, I've also heard this comment in the past from someone who had a temporary ileostomy.
I agree that after a while you just feel like let's move on and not let it run your life. However, I did have a temporary ostomy for about 8 months between surgeries and eventually went to a permanent ileostomy. It was like night and day in function in that the temporary ostomy did not work very well, was more likely to leak, etc. So I understand the concerns if it's a new temporary situation. The permanent ostomy made me feel more secure once I healed. The concern is always there when traveling, etc., but I don't let it prevent me from flying or going places. What helps me is always having my supplies with me and being careful with my diet when I'm out and about. I also change my appliance more frequently so it is less likely to leak, but if the “worst case” happens and a leak occurs, I am prepared for it!

MizNola
May 13, 2024 3:28 am

I live in a small farming city in Kansas. I have had a urostomy since my bladder was removed in 2009. There was a wound nurse that visited me in the hospital once and told me of a support group. Unfortunately, the group met in another city in an adjacent state about two and a half hours from my home. I received some answers from the friendly folks at ostomy manufacturing companies and samples to try. But the best advice was from articles in Phoenix Magazine.
After getting comfortable with my ostomy, I went on several cruises, took a train to the Grand Canyon, drove halfway across the country to spend a week on the Outer Banks, and down to Texas for a reunion of military friends and to visit family. Had a few leaks and accidents along the way but just grabbed my go bag of supplies and change of clothes and took care of myself.
In 2020, I went in for hernia mesh implantation. Developed abscesses and UTI infections that had me hospitalized, transported to rehab facilities, back to the hospital with another UTI infection, back to rehab, back to the hospital for still another UTI, back to rehab, and finally, after a year and a half, I finally got to return to my home. Ended up with kidney function down to 24% and nephrostomy tubes to drain kidneys. Those tubes need to be pulled out and replaced about every 4 to 5 weeks, so I have to plan my life around these half-day procedures. Those tubes constantly drain into two collection bags (one for each side) and those bags with the attached 32 inches of plastic tubing then need to be hidden under clothing or carried in a bag.
But I refuse to let my appliances stop me. Have attended a 3 Dog Night concert, a Celtic Thunder concert, a couple of weekend-long family gatherings, and my local club and service organizations that hadn't folded under COVID. I try to always have an event on my calendar to look forward to and use as a goal to keep up with the rehab exercises. Sure don't hesitate to use a store's electric cart when available, and to park in a handicapped spot.
I don't expect kudos for managing as I am sure there are others with much worse problems. I am just grateful for what I am still able to do as if that cancer hadn't been found and removed in 2009, I wouldn't have had this many years and I am determined to wring as much enjoyment as I can out of the time I have left.

warrior
May 13, 2024 5:16 am
Reply to Healthygirl

Sounds like you have a good grasp of your situation.

Confidence in your appliance is extremely important. This happens not too quickly for some and quickly for others.

I never bring anything with me. I'm that confident 4 to 7 days it will hold.

But there are times it lasts one freaking day and without those C extended strips, oh boy, I would leak like the Titanic.

Your diet, your movement, and temperature all will affect wear time.

I do not get changing the appliance every day or two days when there is no smell or visual leak. But some folks regain confidence doing that.

Not me. Upon checking the perimeter around the seal, I'm going anyplace I want.

I do have a traveling bag for those overnight times.

Rarely, however, I do sleepovers. If you get my drift? I'd rather have a home field advantage on that occasion.

But locally, even a 2-3 hour drive, I bring nothing as backup.

Moments later...

I see this is your first post and wanted to welcome you to our community. Be a part of it. Write in, ask, answer, question.

It's all good here. Nothing to be ashamed of or embarrassed about.

Deal with it. Move on. We can help.

Experience and time. It's what we got here.

warrior
May 13, 2024 5:21 am
Reply to MizNola

Good for you. Making the best of what you have to deal with.

You are an inspiration. Welcome to the community, too.