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PTSD: am I alone here?

Joined: 3 years ago
Posts: 54
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Hi all,


I've been going back and forth on posting this for a couple weeks.


I still find it really difficult to talk about having an ileostomy growing up (since reversed), even with medical people who obviously know what they are. Case in point, the building I live in has a home health nurse come once a month and offer a free wellness clinic, where residents can have their vitals checked and the like. I decided to tell her about it, in the hope that she could connect me to someone who could answer some questions I have, which we're still working on. That turned out to be a good idea, but telling her that story was really hard.


I'm also still on the seemingly never-ending search for stable gainful employment, and the vocational rehab people I'm working with are pressuring me into considering things that I'm not sure about. One of those is volunteering at the state school for the blind, with that whole volunteering can lead to a job theory. I reluctantly agreed to look into it, and it is close to where I live, so it's a quick bus ride away. There are a couple reasons why I'm hesitant about it though. The one I tell everyone is that it feels like being pigeon holed. In other words, to me at least, people think that just because I'm blind, I must want to work with blind kids and teens. I kind of feel like there are plenty of other people who could do that better than me, if their whole reason is because I'm a blind person myself. Perhaps I could be convinced, though.


The other reason is that it brings up my own terrible experience. Like some of my peers, I started out there before transitioning to my regular elementary school once I'd learned some specific stuff like Braille. Since I was so little then, my teacher had to pull me out of class every day to empty my bag which I always dreaded because it was so humiliating. It was extra so when I would have a substitute teacher, or when I got a new teacher one year who wasn't shown how to empty, so she started asking me what to do.


I'm not comfortable sharing that traumatic experience with the people trying to get me to volunteer there now. I submitted all the paperwork they needed, and they asked me if I'd be interested in being a substitute teacher for them. On paper, this should be awesome; it wouldn't be a full-time gig, and I'd get paid when they need me. I went up there a few weeks ago to talk with people there more about what they were looking for, and to spend the day in one of their classes to see what it might be like. I got the idea that they think I'd be good asset for them, and as soon as I give the OK they'll start paying me to sub for them.

That should be something I jump at while I keep looking for full-time work, right? As soon as I walked in and saw the little kids I was with for the day, all those feelings of humiliation came back, and watching the teachers interact with the kids instantly took me back to that day in first grade with my teacher not knowing what she was supposed to do. I had to pull my phone out more than once and pretend to be texting because it was that triggering. Yeah, not very professional, although I am a border line millennial after all. lol


I told them I would need to come back a couple more times to find out if that would really work for me. Yeah I know I'm an adult now so nothing would happen to me, but that experience still came back. In some ways I feel like I should've long been past that. In some ways that doesn't seem like that should be traumatic; that's what veterans deal with, or someone who witnesses a tragic event. I wouldn't think needing help with personal care could cause the same feelings. In other ways though, it makes perfect sense. And yes, I have talked with a therapist about this stuff, but the one I liked moved and the guy they put me with didn't click with me at all, so I haven't been back since.


I've also thought about seeing if there's someone up at the school I could tell my story to should I decide to work with them more. I don't want to turn down a seemingly good opportunity just because I can't get out of my own head.


Any thoughts? Is it just me?

Nechrotizing Enterocolitis 7/3/1982
Ileostomy 7/29/1982
Reversed 8/1/1995

VeganOstomy and LK liked
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Joined: 4 years ago
Posts: 1736

It’s been quite a journey for you! Ask your self this! Are you gonna let pass experience and hurt dictate what you are now and what you can become. Also think how you could make a huge difference to someone’s life. Unless you give it a go you will never know. Life has so much we can’t control be an opportunity like this well the ball is in your court. 👍

ileostomy 31st August 1994 for Crohns

LK, LLNorth, Tony and 1 people liked
Joined: 2 years ago
Posts: 808

Hi Brian,

Life is so hard as a kid, anything that makes you different in any way can be traumatizing and it is hard to recover from!!  But as an adult, you have so much more wisdom and insight into life and how the world works. The kids you would be teaching are not the same kids you were embarrassed in front of, and they will be more intimidated by you as an adult, than they will be looking for something that makes you different. Kids do tend to automatically look up to adults and look to them for approval. You may be an inspiration to some kids without having to do anything or even realizing that they are looking up to you. 

That being said, there are lots of things you can do in life, and life is too short to spend it doing a job you hate (trust me, I had a job like that several years ago and I wish I could get back the years I spent there) so if you are shying away from this because you really think you would hate it, move on. But if you think you might like it but are just out of your comfort zone, face your fears head on. 

As far as the ostomy, it was such a hard adjustment for me, as it was unplanned and unexpected. But I have tried to change the way I think about it and rather than trying to hide it, I am probably erring in the other direction by over sharing about it. I probably tell more people about it than I need to, but I have found for me that is taking away some of the stigma, and also just helping me to deal with my “new normal”. I still have quite a bit to get sorted, but I’ve been trying really hard to accept things as they come. It is hard, but this group can help with that. 

I totally understand what you are feeling, and hope you can work your way through it. Hang in there!!  You’ve got this!!

Ileostomy 6/18/2018
“May your day be bright and your bag be light.”

john68, Tony, LK and 1 people liked
Joined: 2 years ago
Posts: 239

Hi Brian,


You would do well to take John and Liza's counsel. I especially identify with:


Letting past hurts define what you can become: Quite eloquent, John.  Brian, the barrier here is intangible but very real to you, but I encourage you to look ahead and try to project how each choice might make you feel about yourself once it's behind you and you've had time to live the potential consequences. I've found that this has guided me in making difficult choices with less indecision. In a perfect world, you get to make the choice you will be able to live with later in life versus the polar opposite, but in this world it turns out to be a choice between two or more evils, with the best choice being the lesser of the set. Ah, adulthood!


Life is too short to spend time doing a job you hate: From a practical standpoint, this is the harder dilemma, as it involves the potential for more immediate relief of financial hardship and chronic personal frustration. I have to echo Liza's sentiment. Being committed to and unable to break away from work you don't enjoy is miserable in the extreme. If you're just afraid of messing up and/or letting people down or looking bad, then I would say you should seriously consider going ahead with the opportunity. How we think others are going to perceive us is a self-perpetuating problem because we're so well acquainted with our own faults and fears that we often can't help but be certain that others can see them in the same stark relief with which they color the canvas of our self-image. As Liza iterates, the kids won't see a preadolescent ostomate needing to have his bag emptied; they'll see a grown-up, a teacher, a man whom they can emulate, or not, depending on their own worldview. In other words, they'll see what they would see in pretty much anyone else in your position. Some, maybe all, will probably see something more, a blind adult doing something that maybe the other adults in their lives might have led them to believe only someone who can see could ever do. I hearken to my own childhood and how amazed I was to see blind adults travelling, cooking, etc., after mostly having been exposed to overprotective and prejudiced adults who instilled their own assumptions in me of all the things that I could never do as well or at all, most of which turned out to be false, except for driving and recognizing specific people from half a mile away. Still can't do those last two. Haha. Come on Tesla, Daddy needs a new set of self-driving wheels!


Getting back to your first issue, I encourage you to seek some sort of professional help from a qualified therapist. I favor cognitive behavioral approaches for issues like this, as they can provide you with practical tools to employ when the going gets especially tough. It's a lot of work, and much of it unpleasant, but in the long run it pays dividends. This I think you should do regardless of what choice you make about the teaching position. Those feelings of humiliation coming to you like a flashback are not helpful to you. They're overpowering and severely limiting. It's best to do all you can to break that cycle. A therapist has gone to school for a long time to learn to help people do that and knows way more about what's available to achieve that end than most outside the field know exists. Besides, therapists go through their own hardships and bear their own painful memories just like anyone else. Many times that's what leads them to their line of work.


You're not alone, Brian. These feelings you describe are not unique to you. They're like trying to swim against an undertow in a storm, and plenty of folks get that.


Hope this helps.

Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th

LK, VeganOstomy, zhtfreak and 2 people liked
Joined: 7 years ago
Posts: 3281

I'm sorry to hear about your PTSD - it certainly is a valid and real concern for many people who have gone through a medical trauma or negative experience like you have. 

I would seek counseling to address the PTSD. I would hate if you lived your entire life with the burden of that anxiety.

As for job prospects, I would only go for something that you love and that makes you happy. If you feel like a potential opportunity might bring up negative feelings, let it pass. There is always something better. 

You certainly aren't alone!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~

Tony liked
Joined: 3 years ago
Posts: 223

I may have missed it.  But I didn't see where anyone asked YOU, what do you want to do?

heres something I ran across last week, I kayaked for years in small creeks flooded with snow melt water.  I would have said no, a blind person certainly can not white water kayak, you need to see the river,.   don't let people hold you back.




Joined: 4 years ago
Posts: 1055

Brian, I echo all of the above. But,  I have read what others want  for you to do as a job, but I don't think I read anything of what YOU want to do for life work. You have choices before you.  If you try something and you don't like it there is no harm in moving to another job in life. Being happy in your work is a vital tool to surviving  this world.

As I child  I have had a very weak bladder my whole  life. Now, I now I have a bladder disease and a small capacity tank to boot.

As a child in grade  three, with a substitute teacher who would not allow me to use the washroom till lunch, I wet myself and all over the floor in front of my whole  classroom!!! Plus, I was a bed wetter. My mother would hang  the beds blankets out the front bedroom window to air them out  but the teasing that raked over me for these experiences was painful galore!  We lived down the road from our elementary school so everyone saw them! As an adult when I heard of a child no matter the age, that has these issues, I get on my knees in front of them and tell them I used to wet the bed too. The look of relief on the faces I have  shared this with is always shock and relief.  Acknowledgement that they are not alone, is good for them. They see me now as a mother and know that they are not alone. I also encourage mothers to get the child to a urologist so their issues do not go unsolved till adulthood. harsh on anyone and very real. My face to face encounter with a big rattlesnake speaks highly of that! I still wake at night with nightmares and gasping for breath. If I even see a bent tree branch in the road ahead of be the shape that looks familiar, I tend to want to panic and run the other way.

Like Liza, I told many about my ostomy at first as it helped me figure out the TMI thing, educate a little, learn a lot.  Eric was non- existent to me at the time. Ten tears down the road I can see where these  experiences led me to an understanding that I can use to share with others who may not know,  they need to know, what I just told you. I needed some major help over the snake thing! It was a good therapist that helped me deal with the issues I was having. One such young man I was able to help by sharing my ostomy experience with, was taking my groceries to the car for me.  It turns out he was reading on line, at school about Crohns disease because he thought he had it and did not know how to talk about it with anyone. My being open to opening up my wounds helped him get to the doctor and tell his parents  what he was going on, and experiencing every time he went to the bathroom. He was 16 at the time and was cleared of his fears thru a GI. doctor. When he told me he finally told his folks, they reacted immediatly getting him to the right doctor. Sharing our life here opens the lines to communicate too.

Brian, you have so much to offer. As a kid, I had no clue I would ever talk confidently about the teasings, and bed wetting,  the poop issues, and creepy crawlers.  Knowing I can help others makes it all worth whole and I wouldn't  change a thing. Set your fears aside, get professional help if need be,  and know that there is no shame in that!  Live the best you can. You wanted to write a book about being a blind ostimate. If you have not already, why not  start there. Your life is before you, whether you drive a car or not, you get to choose the road you drive.  Try not to be so hard on yourself,  you've got this in your hands.