Response to PTSD Crisis as an Ostomate: My Journey and Support

Let me introduce myself. My name is Julie. I became an ostomy nurse in 2001 and got a permanent ileostomy in 2009 with the condition almost exactly like you describe.
In 2009, the doctor told my family that even if I went home, I wouldn't make it. Of course, they did not share this information with me. What they told me was that I would never walk again. Eventually, I did walk again and returned to my career twice. The disability judge at my hearing told me she didn't know of a single judge that would grant me disability a third time, so I may not return to my career until I turn 67 and begin Social Security instead of disability.
I went to work one day as a wound ostomy continence nurse and stayed for a little over 3 months as a wound ostomy continence patient, with constant rounds of septicemia. (These days they just call it septic; it means bacteria in your blood where it circulates through your whole body and can deposit anywhere). The germs that I had were almost all antibiotic-resistant, and I had to have even experimental antibiotics. Most doctors agree it's a wonder I can still hear because most big gun antibiotics are toxic to parts of the ear and affect hearing.
Every time I get septicemia (and I have had it more than 10 times now), I start to show symptoms of what would normally be diagnosed as schizophrenia. Except schizophrenia typically occurs in people in their twenties for the first time and is a lifetime affliction. Mine only comes and goes with certain types of blood infection.
So... on top of everything else, I would get paranoid delusions, delusions of grandeur. I once called each of my sons around 3:00 in the morning, telling them that "I was a spy on a mission in Russia who could not speak Russian and I needed them to bring me clothes so that I could get out of the facility I was in safely." They reassured me that they would be there when they could, and I spent the night in terror, but that's only one night out of many with those types of delusions.
My long-term stay in the hospital started a chain of events that eventually ended up in kidney infections, resulting in hospital days by count 264 out of 365 days in 2019. Also, having a right kidney removed in 2021 and started dialysis in 2022. Worse, I lost my husband to Alzheimer's in 2022. We had been together for 40 years, but I took care of him for 10 before his PTSD from the Vietnam War made him dangerous to live with, and I had to put him in a nursing home on our 35th wedding anniversary.
The worst part of all of this is that my body does not break down and use the medicine for pain called Dilaudid. But because it was new to the hospital, MDs decided it was better than morphine, and I was never given the option of opiate-based pain relief. I was only given this synthetic opiate, which my body could not use; therefore, I had terrible painful peritonitis. I could not roll on my side for any reason for more than two or three minutes. For three solid months! They finally let me leave the hospital on Oxycontin, which did control my pain surprisingly but addicted me. They didn't think I was going to survive, so they weren't too concerned about addiction.
I spent five years in pain management weaning off of pain medication so that I could resume my career, and I did. I also had to learn to walk again for the second time in my adult life. The copay for Medicare at that time was $25 for every visit. I could not afford to have nurses or physical therapists come to my home, so I traveled 3 days a week for wound care and physical therapy, and the other days I rehabbed myself.
We lost our home because I was the primary wage earner in our family.
Believe me, I understand PTSD and depression.
I'm really glad you seem to have found support in this group. I'm hearing a lot of cheering and a lot of encouragement in their responses to you. I wish I had had this when I was going through it all, but I realized at some point that God (or Mother Nature or Fate or whatever you want to call it) decided that I still needed to do something in this world before I go to the next. Maybe helping on this website and similar ones is part of the reason.
I'm in a new relationship. I am happy for the first time in a long time. I lost my colon, my husband, and my career, but I'm on this side of dirt, and that's a positive thing.
I felt like giving up so many times. One of the things that I have found helps me and many of us is finding some sort of creative outlet for our talents. I needed a reason to get up every day. I moped for over a year after my husband was placed in the nursing home, and it set my recovery back a long way.
Every movement is a good movement, especially a bowel movement. Remember to keep moving whatever and whenever you can. And take whatever laxatives you need so as not to get bound up by the opiate pain medication.
Lastly, I have found that ostomates on the whole do not sleep the same as everyone else. There's a constant concern that your bag will rupture, and you will be covered in either urine or fecal matter or both if you happen to be one of those lucky few. (I didn't say what kind of luck it is.)
The statistics tell me a lot. Eventually, the pendulum has to swing back the other way. Even Mother Teresa got depressed and despaired, and she didn't even have any type of ostomy that I'm aware of.
So there you have it. You're already one up on Mother Teresa. I apologize for the length of this response, but I wanted to make sure that I was able to show you that you can do this.

Hello Julie.

Thank you so much for sharing your story. It has come as a very useful read at a time when I needed a different perspective on things in life.
Best wishes
Bill

Thanks, Julie, for this and for everything you do on this site!

Daniel

I always remember this: "When the going gets tough, the tough get going!"

And you, Julie... are tough. Thanks for sharing your story.

I'll tell you a story. This beautiful woman and a good-looking guy had it all. Then she began to develop a skin disease. She knew he would leave her. Then one day, he was in a car crash and went blind. She helped him, and he loved her very much. One day, she died. He was sitting outside shortly after. A man walked up to him and said, "How are you going to get by being blind?" He took off his glasses and said, "I'm not blind. If I had told her, it would have been hard on her. Sometimes we must see past our disabilities and be who we are, and not let others control us. They either love you for who you are or not for what they want you to be. Just be yourself because time is something you can never get back. Enjoy it now."