Anxiety about sharing my ostomy experiences - anyone else feel the same?

Hello,

I found this site via Twitter this morning. Figured I'd post to see if anyone would be willing to connect and let me pepper them with a bunch of questions. I'll probably have to put up a second topic to get all of what I'm looking for since my story is a bit unusual.

I was born premature so don't have any eyesight, and also had an ileostomy throughout my entire childhood. I have since had a successful reversal, but within the last few years I've realized that having the ostomy had a pretty big impact on my mental health. I didn't mind the bag itself as it was all I ever knew, but what I didn't like was being completely dependent on others as I was never taught to take care of the ostomy on my own. This led to a lot of humiliation, and in retrospect, a lot of self-confidence issues. I wasn't comfortable with anyone other than my mother or her mother helping me. So if they weren't around and say, a babysitter was watching my sister and I, or I was spending the night at a friend's house, I couldn't ask an adult to empty my bag for me because I feared they wouldn't know how to do it.

Most humiliating were my earliest years of school when my teacher had to pull me out of class and empty for me. I dreaded that every single day even though at that young of an age I knew it was necessary. That dread intensified if I had a substitute for the day, or when I moved up a grade and got a new teacher who wasn't quite sure how to do it, so I was caught totally off guard when she started emptying but then asked me what to do next, to me, I thought she should have known what to do ahead of time. That has stuck with me, probably because it was extra anxiety on top of what was already there whenever someone new had to help me.

A couple years later, around third grade after I'd transferred to a mainstream school my mother tried teaching me to empty on my own, but the second it got difficult she yelled out of frustration and decided it was just easier to go back to doing it for me. She never tried to teach me again after that, never mind the harder process of changing the bag. That experience has also stayed with me because it meant that I would continue to be totally dependent on others, and what school-aged kid would want that? What kid would want to be spending a night at a friend's house, be embarrassed when said friend would ask what that big thing was on their side, and then have to find their friend's (someone else's mother), who they don't really know, and ask them to empty their bag for them and wondering if they could figure out how to do it? At this point for me, they were still thinking I wouldn't be able to be reconnected.

A few years ago all this stuff came up for me in therapy, and I had a good therapist who diagnosed me with PTSD because of that, which is super interesting to explore and is actually what led me to start researching online and find these communities. I've had a couple therapists since who have consulted with their higher-ups and they say that experience doesn't meet enough of the criteria to count as "real" trauma. I think they're wrong though.

I still find that I get really high anxiety whenever I try telling someone about having the ostomy, even if it's someone like a nurse who is trained and knows what one is. I DO NOT like sharing this stuff; it's the most vulnerable I ever get. Although, it does get a bit easier once I know the person knows what I'm talking about.

Does any of this make sense? Has anyone else here had feelings that are at all similar to mine? I don't know if my feelings are different/more intense since I was a child when I had my ostomy, but that might make sense. I haven't looked much into how children and young teenagers cope with these kinds of challenges. I never knew anyone else who had an ostomy till I started researching on the Internet. I went to a local support group in 2019 just to try and educate myself. I even told the nurse running it that I wanted to pick her brain because she's exactly the type of person I wish I'd had all those years ago -- a professional who had patience and training who could've taught me to take care of my ostomy independently. I tried reaching out to the clinic at the hospital who runs the support group to see if they would let me meet with one of their nurses to see if they could show me some of the supplies; essentially teaching me what I never learned as a child. Partially because I think it would be cool to see if I could help put together some material that could help another blind person to manage their own ostomy, but probably more so to prove to myself that I could have managed mine on my own. That sounds so weird to say and a weird thing to be passionate about. The people running the group told me I could come to the group when they started it up again, but they never got back to me and they won't let me schedule a one-to-one appointment because I don't currently have an ostomy and am not planning on getting one.

Anyone here willing to message me and connect via FaceTime or Zoom so I can ask a bunch of questions? I'm thinking maybe talking to another "me" might help me continue to work through the long-term mental health effects this stuff had on me.

Sorry for the novel, lol. Thanks for reading.

Brian

Nope, 'cause if you didn't have an ostomy, you couldn't tell them shit. You would be dead!

It is problem enough to deal with an ostomy if you can see. I cannot imagine all you had to go through, especially being a child. Glad you could have a reversal. I am quite a bit older than you, but it does not bother me for anyone knowing I have a colostomy. I think it is no more of a problem for them than any other thing. They can accept me or not. I hope you can get the help you need. Best wishes.

Hello Brian.
Thank you so much for sharing your story. It sounds like your experiences would be suitable for a free-standing book. – One that it appears (by your present writing) you are quite capable of writing for yourself.
Just a quick note on ‘therapists’ : The ones you mention that consulted with their higher-ups were obviously not clued up about PTSD and, by the sounds of it, neither were their mentors. The one who diagnosed that in the first instance was the one that you should be confident that they knew what they were talking about. All sorts of things can cause PTSD, and it needs a specialist with the right expertise to treat/help people with unusual causations.
Back to your anxiety: I think that i can probably talk for most of us on here when I say that the very fact of having to cope with a stoma (whether as a child or an adult) is anxiety provoking enough, but to do it blind! Well, the mind boggles at the thought.
Your story is so unique that it is unlikely that you will find someone who has experienced precisely the same problems and have dealt with them in the same ways. However, your idea of compiling some material to help other blind people in the present and the future sounds great. As already mentioned, I believe that one of the best and most efficient ways of doing this, both in the short and long-term, would be to write a book on the subject (and get it published). This way, the information is stored in places where it becomes accessible to everyone and anyone who has an interest. It also becomes available to the wider public, who really need to know about these things.
From my own experience, I find that writing about emotions/feelings/thoughts/ problems etc. becomes a cathartic technique, at least equal in efficacy to external ‘therapists’.

My own preference is to do so in rhyming verse , so I will share just three of my rhymes from ‘A Thesis on Constructive Conversations Inversed' ( 2012 pp220-223) I do hope you can apply yourself to writing, as this could be what you are looking for to help you move forward in so many ways. – Enjoy the rhymes!

Best wishes
Bill

POST TRAUMATIC STRESS DISORDER.

Post Traumatic Stress Disorder.
Is an emotional marauder.
It intrudes upon your life.
Giving you emotional strife.

A major trauma’s stress it brings.
Or mounting up of minor things.
Unresolved accumulation.
Stressful, mindful mutilation.

It’s when your mind takes a big knock.
As earthquake and it’s aftershock.
Knocking you from your momentum.
Disturbing equilibrium.

This stress’s notoriety.
Is causing great anxiety.
Amazing what a kick it packs.
Both trauma and its own flashbacks.

Post-trauma’s instability.
Shakes up your ability.
After such an incidence.
You start to lose your confidence.

Your perception starts to alter.
Your whole life begins to falter.
It isn’t just the helplessness.
What gets you is the hopelessness.

Your mind just goes all round the place.
You’re in a world that you can’t face.
You focus on the negatives.
And fill yourself with sedatives.

You need to understand these things.
And all the problems that it brings.
Then you need to work it through.
‘Till it no longer bothers you.

This is true, ask anyone.
But it’s easier said than done!

                                          B. Withers 2012

POST TRAUMATIC STRESS DISORDER 2.

How is it affecting me?
This thing they call P.T.S.D.
My mind is working overtime.
But still it’s sinking in quicklime.

In fast forward, stuck in gear.
If I shout, no one will hear.
This stress is never audible.
And certainly not laudable.

The aftershocks of mindful stress.
This causes me the most distress.
They spring up when I’m unaware.
It makes this thing seem so unfair.

The thing that makes me most annoyed.
Is when it makes me paranoid.
There is no one that I can trust.
It’s like my friendship bank’s gone bust.

From everyone I might be harmed.
Unless somehow they are disarmed.
This does not help as in the end.
I’m losing every single friend.

Black clouds of great immensity.
Make way for animosity.
All this bitterness or course.
Can be a most destructive force.

Though from post-trauma it has grown.
It gains a power of its own.
You no longer have companionships.
For it destroys relationships.

I’ve told you what post-trauma means.
As a painter paints his scenes.
And I hope by doing this.
I can come back from this abyss.

                                           B. Withers 2012

POST TRAUMATIC STRESS DISORDER 3.

After trauma there’s some time.
When you don’t feel in your prime.
When you have taken a big knock.
There’s bound to be an aftershock.

Trauma does not show respect.
Its affects will resurrect.
It takes you back into your past.
And so the trauma die is cast.

It repeats time and again.
Regurgitating all that pain.
It doesn’t seem to go away.
So it stays with you every day.

You feel okay and then you find.
Your confidence is undermined.
The flashbacks from the trauma pain.
All come flooding back again.

Everything is black and white.
When you’re feeling so uptight.
With everyone you will find fault.
For everyone is an assault.

Your actions are foreseeable.
And very disagreeable.
As you become inflexible.
The damage’s inestimable.

It’s more likely you’ll succumb.
The more dogmatic you become.
For there’s no doubt rigidity.
Undermines validity.

After trauma you should relax.
Let your inner strengths climax.
Move from the traumas and in lieu.
Try some things entirely new.

                                    B. Withers 2012

Hi Bill,

Thanks for your reply. You're not the first person to suggest that I could write a book. People on another ostomy forum have suggested the same thing, and I had an in-joke with that therapist from 2017-18 that we were going to write a book together (I even came up with a partial working title), and do a book tour with a colleague of hers who is working on a novel. LOL I do have a journalism degree from university though.

I'm not sure I could fill a whole book though, at least not without learning a lot first. There's so much I don't know about the ostomy stuff since it was so long ago that I had mine. I will post all my questions about that in a separate thread.

Yes, it is interesting that my current, and last, therapists don't think my experience counts as traumatic. Apparently the guide they use for diagnoses (which I've looked up online), says it doesn't meet enough of the criteria. Both of those therapists do have prior familiarity of what an ostomy is, so it made it WAY easier to tell them about my having one. My last one actually resorted to Google to see if she could find anything linking an ostomy to trauma, but it sounded like everything that came up said the trauma would most likely come from what caused the need for an ostomy, rather than the ostomy itself.

That's just superficial stuff though. I do know that working through it is helpful though even if I can't quite put my finger on why yet.

Brian

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hello Brian.
Thanks for your reply to my response to your post.
The first thing that I would say is something that someone once said to me: “If you are going to write a book, then choose something that you know about “.
When I suggested that you write one, I was taking into consideration that you know a great deal about the trauma, the emotions and the ‘feelings’ you experienced as a blind person and someone with a stoma. You do not need to know everything about stomas to write about your own feelings.
I don’t know a great deal about blindness, but that doesn’t mean I cannot write about it from what someone else has told me – see the rhyme below:
The second thing I would say is that those people who don’t think that major surgery is (or can be) traumatic, SIMPLY DON’T KNOW ENOUGH TO CONSIDER THEMSELVES ‘EXPERTS’. As for those who resorted to the internet, al I can say is that they did not input the right questions; I have just typed in ‘trauma from major surgery’ and came up with lots of relevant information about PTSD as related to surgical procedures.
The fact that ostomies are not specifically mentioned is irrelevant, there are one or two reliable studies that indicate how (any) physical surgery is, or can be, directly related to mental trauma.
My third point would be to say that working through things is often ‘therapeutic’ or at least ‘helpful’ because it creates clarity, understanding, and logical reasons for feeling the way that you do.
Most of my past rhymes have been reinterpreting people’s ‘feelings’ and stories, into rhyming précis of what they have told me. They find this very helpful because it is their own thoughts being expressed in a shortened and clearer way. Their stories when told to me, have what is called a ‘cathartic’ effect, which basically is getting it off their chests and sharing it with someone who will listen empathetically. Perhaps it is fitting that the rhyme chosen below  is in my book entitled'Catharsis'.
Yours’ is a very powerful and interesting story, that should be told in your own words and your own way.
I do hope that we hear more about your progress along that route. In the meantime, I hope you enjoy the rhyme I have selected for you.
Best wishes
Bill

IT’S ALL IN THE MIND.

Once I knew a blind man
who made it seem so real
that he was locked in darkness
and round the world did feel.

Graphically he showed to me
his failures and his hopes,
as I watched the way that he
did fumble and did grope.

Then, with a grin, did hold his chin
away up in the air.
Off he marched, no stopping him
as if he had no cares.

Inviting me to come along
he showed me how it’s done.
Each bold step was never wrong,
he made it look like fun.

“Young man”, he said, with knowing smile
and face, so wrinkled kind,
“I need no eyes to walk a mile,
PERCEPTION’S IN THE MIND!”

Perhaps the question should be asked:
Who saw most along the way?
For sight and other senses mask,
and blind to certain things you stay.

Think about it!

                                   B. Withers 1988
                               (In: Catharsis 1992)

I agree, lovely!

You have to realize that ostomy or not, there are people who aren't going to like you. You're too short or tall, fat or skinny, black or white. You see where this is going?

Your ostomy defines you only if you allow it. Put what people think behind you, and I guarantee you that their attitudes will change because of your own self-confidence. You have to let people know that this is who you are, and you're okay with it.

I know it's hard because you're so young, but the sooner you put one thing to the test and see it for yourself, is the only way you're going to know it's true.

I am also glad that you had a reversal because dealing with an ostomy is not easy, but I believe that should you cross that road again, God will make a way! He will provide!

Stay strong!

E I