Seeking Advice: Dealing with Medical Trauma and Reversal Surgery

TL/DR

TW: Medical trauma, PTSD

*My trauma surgeon referred me to a colorectal surgeon to discuss reversal surgery options, and I am full of fear.*

So... back in April, I had emergency surgery due to a perforated bowel. I was extremely ill. I had peritonitis and septicemia. During my surgery and my stay in ICU, I was resuscitated twice. Since April, I have asked my surgeon about some lingering problems like feeling that I hadn't been told the truth. My memory and my ability to recall words are shot. When I try to fall asleep, I have involuntary reflexes that startle me awake. If it happens once... it'll happen all night long, and I won't sleep at all that night.

I know that I am describing medical trauma. I feel like my trust was violated because my surgeon tried to protect me by omitting certain details.

So, now I'm off to a new surgeon to talk about my situation and my options. I thought I'd be happy. But... after a short burst of surprise, slowly changed into trepidation and then into fear with spritzes of anxiety.

I'm interested in hearing from people who've dealt with medical trauma on top of their PTSD. How did you overcome those feelings?

I'm interested in hearing from people who've dealt with reversal surgery—especially those who weren't diagnosed with any known GI conditions but landed in recovery with an unexpected ostomy surgery.

I want to ask informed questions. However, this is something that I don't know what I don't know.

Gigi, I have a degree of PTSD from my experience. I think we all do to some extent, but nowhere near the medical trauma that you went through. I just can say that you are not alone and I'm sure will hear from others who can help you. I hope it gives you the support and sense of validation that you deserve.

Hi JG1967, I went through a very similar experience as you. Perforated bowel emergency surgery, 4 quad peritonitis, septic shock a week in ICU. Not pleasant at all. I also understand the anxiety and fear of reversal. I am booked in for reversal on August 3rd.

Since I found out I would be going back in for another open surgery, I have been sick in the stomach with anxiety, waking up at all times through the night, mind racing etc. So if it helps, you're not alone.

Also, mine is not a straightforward reversal. They have to cut more colon out. How much? They don't know.

Bill.

Hi, when do you meet with colorectal surgeon?

It's normal to jump from excitement to fear/anxiety. They are all aroused emotions... heart beats faster, cortisol increases and your body is like ok, let's prep for this.
Tomorrow (I guess today in my time zone) is my one year colectomy anniversary and I was feeling the PTSD flashbacks starting. The majority of my PTSD stems from medical trauma. I had to undergo a 6 hr psych eval for adopting internationally, and somehow the testing showed I wasn't a naturally anxious person but trauma changed my brain.

My colectomy itself was planned... I was able to work with a psychologist leading up to it... I think I called the psychology dept that works under the digestive disease umbrella at the health system most of my care is at now within a day or 2 of finding out there was nothing else they could try to save my colon. The psychology team worked with the colorectal team to really try and be aware of my triggers... pain and cold are two for me so sometimes I wake up from a surgery wrapped head to toe in blankets. As far as PTSD not being triggered that time; was better. My colorectal surgeon has held my hand until I was asleep each time she's performed surgery on me. She doesn't even change into scrubs until I'm

I had a 2 foot blood clot a few years ago and couldn't fall asleep for a couple months after unless someone was holding my hand because I was so afraid of the clot breaking off and traveling to my lungs even though I had a vena cava filter. I didn't sedate for a procedure when they were trying to break up the clot ... and then they started trying to hold me down on the table and this sweet nurse helping hold me down said "breathe like you're in labor going to have a baby"... the poor woman had no idea I had almost died in childbirth and that was one of the worst things someone could've said to me. So that was game over...and they put me under general anesthesia for most procedures now...that don't usually require it. They had an all-guy team for when they took me back to finish... I'm not a big person. I swear I'm a delight under none PTSD triggering circumstances, well I can be

I hope every time I tell someone I asked for help (in my case seeing a psychologist) it helps remove a little more of the stigma that comes with seeking therapy for mental health. It should be treated like any other issue a person's body is having.

I had unexpected complications after my 2nd surgery last November. I had told my husband to stay home with the kids so they had one parent around. Then I tanked. I remember handing my phone to the nurse to talk to my husband because I couldn't talk. They flooded me with as much as Ativan as was safe for my body. But my PTSD had already been triggered and my adrenaline was burning through it. I remember looking up at my nurse at one point and I swear some people come into our life for brief moments and we may never see them again but they are who we need at that time. He stayed with me past his shift ending and did not leave me until I had been transferred to the more intensive/specialized floor and he stayed with me till he saw I was handed off to the new team.

The colorectal surgeon should have your medical history especially if it's within the same health system. You're walking into a different surgery, different circumstances, different surgeon- it will not be the same. Ask what they will do to prevent some of the issues that happened before. If you don't like the answers, you can see a different surgeon. You have options. You have control over choices, timing.
You have overcome so much already. Like eefy said too, you're not alone.

-Jodie

Thank you. While I understand that I am not alone, the feelings of being alone linger. The practical bits of my experience I can accept. The physician who set this all in motion will be contacted by my attorney.

I only have little snippets of alertness, a few minutes here and there. One of the most concrete things that I remember was trying to get the anesthesiologist's attention and not being able to communicate about my reaction to certain medications he'd be using.

I meet with the colorectal surgeon on Monday. I want my ostomy nurse to attend with me, but her schedule won't allow for that. At this point, I haven't seen a GI provider to diagnose and treat any underlying GI conditions that contributed to my emergency situation.

PTSD is just a fanciful name for something that follows from undergoing a stressful situation. Soldiers at war are understandably very prone to it. Some other conditions have similar frightening names: Auto Brewery syndrome happens when you feel drunk without having a drink and Foreign Accent Syndrome when your accent changes from English to a Chinese or Italian one. All these ailments are real and definitely not imaginary. Some of the effects of PTSD described here are totally scary and probably require long-term careful resolution. Then there is PAWS, post-acute withdrawal syndrome, where a long-time drinker exhibits drunk symptoms when he has given up drinking, sometimes cruelly called a 'dry drunk'. I have a friend like that, goes to show how difficult and complex an issue giving up drinking is. I don't know how many such syndromes I suffer from. 'Girl Syndrome' or problems in relationships with the opposite sex, whatever the technical name for that is, I definitely have. However, I am coping well with all of them so far, fingers crossed. Cheers and best wishes.

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 she goes home she won't make it. Of course, they did not share this information with me. What they told me was you'll never walk again. Eventually, I did walk again. I 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 are 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 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 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.

As a veteran, I live with PTSD on a daily basis. I know what to expect from my PTSD related to my time in the military.

I have a therapist who is really good at dealing with my PTSD... Over the last 20 years, I have spent nearly 17 years in therapy.

This variant of PTSD is so different from my other, known and comfortable, PTSD. At night, when I am falling asleep, I jolt myself awake... If it happens once, it'll happen for the rest of the night.... And that night, I'll get no sleep.

I'm not an emotionally expressive person. Since the surgery, I cry at the drop of a hat. I cannot finish sentences due to choking up. I feel violated. My surgeon lied to me.... She accidentally let it slip, about a month ago, that I was a FULL CODE twice and needed to be resuscitated.

Now, my brain feels like it's processing at about 3/4 of its former capacity. I have to search for words when I am speaking (or typing); not very conducive to my ghostwriter life. I feel like I am watching myself several times a day. I am very dizzy and incredibly unstable. My Neuropsych told me that I may feel that way for the next six months. If it persists, she'll likely diagnose me as TBI (traumatic brain injury).

This is all the result of a GI doctor and a bariatric surgeon telling me that my condition was all in my head and I was making up the severity of my symptoms. This was said even though my upper GI studies showed motility issues at the duodenum. I terminated my relationship with both of these doctors because I thought they were trying to kill me. In early April, I had to cancel my appointment with a new GI but I had to cancel due to a low-grade fever. I rescheduled for the following week... But never made it to the appointment because my worst nightmare came true.

I understand what you are going through! I had a colon perforation after what I was told was a "very low risk" Flexible Sigmoidoscopy (to see if they got all of the cancerous polyp removed at my colonoscopy 3 months prior), and got peritonitis and sepsis in all quadrants of my abdomen. I had emergency Hartmann's procedure that removed my sigmoid colon and kept me in the hospital for 21 days with a huge incision, fevers 102-104.2, and End Colostomy. I thought I was going to die, almost did several times. Have been trying to recover but it's been so hard, physically and emotionally - went from healthy to this. Terrified of reversal, and not even sure it can be done as I had so much inflammation. The surgeon who saved me said the doctor who did this to me should never have even done the procedure in the first place - that it wasn't the right course of action. So I contacted a few attorneys - they all said it's just a known risk of surgery, and even though my surgeon would back me, it would just be his opinion against the other doctors' on whether or not I needed the procedure. Curious if you've had any success with an attorney? This whole ordeal has been a nightmare.

I'm glad you at least have the option of pursuing legal remedies. In my case, I was a child (12) and my parents signed off on all of that. I now believe the surgery (colectomy and ileostomy) was at the very least premature and perhaps even unnecessary - my symptoms (U.C.) were well short of the threshold to justify it. I was not prepared psychologically (even though I saw a psychiatrist regularly, but she was terrible at her job) and at that age, you really don't understand what "forever" is. The only major surgery prior to that was caused by a perforated colon (causing sepsis, cut me open, insert drainage tube) due to a botched colon biopsy (this I only figured out on my own many years later, and my mother confessed that they were told). PTSD remains to this day, despite therapy on and off, mostly off, I get tired of talking after a while. So you are not alone but everyone's circumstances are their own. I wish you the best.