Coping with Medical PTSD After Complex Surgery

I have both a urostomy and a colostomy as the result of a total pelvic exenteration for cancer. Unfortunately the surgery wasn't totally successful and I have now started immunotherapy for the cancer that remains. Has anyone else dealt with medical PTSD? I had a rough hospital experience and I am extremely fearful about having to return to the hospital for any reason in the future.

Yes.  I count myself among a number of folks on this site who have been down that road.  I can't offer any real or individualized solution for you, but I can tell you that the awfulness of PTSD following major, life-changing surgery is something that many of us have grappled with and conquered to one extent or another.  After all, we're still here, living with what was once our new reality and now, years on, our own ongoing normal.  Hospitals and doctors are negative experiences that we'd all like to avoid forever, but life's not that simple, is it?  I've been back a couple of times and, each time, I find that I numb myself up to the prospect of the dehumanizing aspects of it and crawl into myself as long as necessary to get through it.  There is a hard core inside each of us that we need to rely on to get us through these things.  You've got it too.  Lean on it and you'll be alright.  Stay well.   HenryM

Long... Henry is right. Most of us have been there. Just trust in your doctors and hospitals. At least they caught it, then fix you and move on. I've spent 1/3 of my life ill and in hospitals, but I'm perfectly perfect now.
Just hang in there and lean on us.
Get well... life is worth the smile, Ritz

Hi there

I have terrible medical PTSD from a long ICU stay. I am also struggling with triggers and flashbacks. I feel you. Sometimes it is so realistic that I can smell it.

Jes

My procedure was done at the University of Pennsylvania Hospital. Very skilled doctors, just some complications and a very long hospital stay.

My Ostomy Journey: Ryan | Hollister

uh what?

If dread of hospitals, waiting rooms, operating theaters, and the time spent there is called medical PTSD, then I do have it. My own immature way to shed those feelings was to not think about them and get involved in distractions, but that backfired. Now I am on a steadier course. Sound advice from Henry: all of us have to find our own way to overcome this malaise, and you will too with time. Best wishes.

As others have mentioned, a lot of people on here have or have had PTSD and come out the other side. It may be worth looking into some counseling? Also, speak to friends, family, and us as much as you can to help deal with it. Xx

PTSD. We reference it often, attempt to understand it, deny we experience it, and sometimes, some of us feel shamed by our experiences with it. If we take it apart, the P is simple; after. T and S can go together unless we can be traumatized without feeling any stress. Is that possible? The D doesn't belong at all! IMHO, it would be a disorder for one to be emotionally, psychologically, even physically immune to the trauma suffered throughout their stoma experience. The traumas we suffered from the diagnosis, remedies like getting our body parts rearranged or removed, wearing a bag, not to mention the possibility of chemo, radiation, more surgery, and stuff we just want to forget, cannot be ignored by our psyches regardless of our physical strength. Stuff happened to us and we don't know how our brains and the systems they control can handle it. It's said, “Whatever doesn't kill us makes us stronger.” I don't ascribe to that philosophy; wish I did. I think we could've been damaged by some traumas and might have actually lost some strength.
Our entire experience beat the heck out of us and we need to heal. We can watch the healing process from our surgeries even if we're left with a scar. We can't see our guts anymore, no more bleeding and it doesn't hurt. We can't observe the beating our brain cavities experienced and know very little about the healing process. I know there are drugs and talk therapy and I hope we take advantage of it. My own experience with those remedies wasn't so great.
Obviously, I can't offer a cure, but a couple of things helped me at least a little. I wondered, “Why me?”. The simple answer is “Because.” I felt sorry for myself a few times and decided it was OK to feel that way for a bit. I realized some folks had it way worse than me and that realization did absolutely nothing to make me feel better. I thanked the “Whomever” I survived and can communicate with folks like you here at MAO.
Mike