Seeking advice after traumatic surgery - Need help with PTSD and colostomy bag

Hi, I am new to the site and need help, advice, and anything else you can give.

I had two lots of surgery in January 2020: bowel resection by keyhole, which was a great success until I had been home for 2 days. Then it ruptured, giving me peritonitis and septicemia. I laid on my living room floor for 2 hours before an ambulance came. I thought I was going to die. Now I have PTSD from the trauma of nearly dying in my own home and a colostomy bag. But I am trying to be strong and I fight the darkness every day. That is why I decided to come on this site to get help and advice from people who have been in the same situation.

Hello Loki.
Welcome to MAO. I am sorry to hear about your horrific experiences, and I hope you get plenty of replies to your post.
It is one of the most difficult things we go through in life when, what we were once used to as ‘normality’, is suddenly lost and replaced with something alien and unexpected. Near death experiences don’t help either in this transition form ‘normal’ to different, and can rightly be described as ‘traumatic’.
It will be rare that any two people will experience exactly the same thing in this process or react in the same ways. However there are enough similarities to be worthwhile sharing and learning from each other.
My own perspectives involved both the physical changes and the psychological and emotional adjustments that were needed in those early days and to help me cope with these I would document my feelings (and ongoing experiences) in rhyme (which can be found on my profile).
What I can tell you about my own experiences is that it can be very hard to adjust to a complete change of lifestyle and a lowing of self-confidence in that early period. However, the good news is that once the initial shock of it all recedes, and you start to adjust to the ‘new- normal’, then things may start to take on a new perspective and we make the most of what we have. Knowing that the alternative was probably death and the prospect of having nothing to look forward to at all.
The general consensus is that life does get easier, especially when you are able to get ‘back on the bike’ ( or do whatever else you like doing) without worrying unnecessarily that you are missing out on these things. The worry often doesn’t help with sleeping, so this too is likely to get back to ‘normal’ once the worrying is reduced and you are doing more of the pleasant ‘stuff’.
The processes of healing both physically and mentally takes time, patience and application. Each facet of your trauma needs to be addressed in different ways to get the best healing possible in the shortest amount of time.
As hinted above, I found the psychological and emotional aspects the most disturbing, so needed something like writing about it to be both a distraction and a healing aid.
You have probably done the right thing by coming to a site like this to share your feelings and hopefully others will chip-in to share their own experiences.
If not, there are lots of past posts on all sorts of related issues, to be found in the ‘collections’ section at the top of the page. I often browse through them for education and support when there is not so much being discussed in the ongoing forums.
I hope things begin to turn around for you sooner rather than later and you can get back to some sort of ‘normality’, whatever that is!
Best wishes
Bill

PS:
One of the things I often do,
is try to share a rhyme or two,
so here is one which at the start
came from the bottom of my heart.

FIRST OSTOMY.

I must admit I had a scare
the first time that I saw it there.
I can’t remember what I said
about this thing so crimson red.

Some thoughts were flashing through my mind
about how fate had been unkind.
Most of all I thought “Why me!”
that had to have this ostomy.

What in the world had I done wrong
that to this thing, I’d now belong?
This thing that stuck out from my tum
replacing my malfunctioning bum.

Right now I only speak for me
when talking of my ostomy.
They told me I would benefit
but I began to doubt that bit.

To tell the truth, I won’t pretend
I thought that this would be the end.
I thought the active life I’d led
was now gone, forever dead.

There was no way that I could swim
with what looked like an extra limb.
There’s nothing anyone could say
to keep these type of thoughts at bay.

The negatives exaggerated
as my mood degenerated.
It seemed that I had lost control
of my body and my soul.

But now I’ve had this ‘thing’ a while
I can look back and I can smile.
For now I’m doing so much more
and I’m more active than before.

                                   B. Withers 2012

Colostomy surgery messes with your body and mind. I was mad for quite a while. I got professional help for it.

Hi Loki,

Welcome to the site. There is a lot of experience on this site and as Bill said, it very well, everyone is different and everyone will give you a different variation of their successes and failures. You can take each and apply as you need them and see what works well for you. If you have any specific questions, please ask. Nothing is out of bounds or has not been said before, so just ask. We are all glad to help you. We've been where you are.

We are all glad to help you. We've been where you are.

Take care,

Puppyluv

Loki, your experience was horrific. I am very glad you have found this site. As the others have said before me, adjusting to this "thing" after you wake up from surgery is not easy. And you have had an extra layer of trauma. If you are fighting the darkness every day, as you said, I would consider getting professional help. If getting help means that you can leave that state of constant anxiety and depression behind, wouldn't it be worth it? In my own case, I sunk into a depression after my cancer diagnosis and ostomy surgery. I thought, being a professional counselor myself, that I could just get through it on my own, but I was wrong. All I was doing was focusing on my own negative thoughts and emotions. I needed someone outside of my own head to help me put things into some kind of perspective. Loki, don't wait another day - find a counselor and take the first step toward putting this behind you.

In the meantime, try to get outside for a mindful walk every day, even if it's only 15 minutes. By mindful, I mean notice what is going on around you - the weather, the temperature, the birds singing, the gardens you are walking by, the unevenness of the ground you are walking on. Notice all of these things without judgment - just say, "Oh this tree has heart-shaped leaves" without deciding whether that is good or bad. It just is. Doing this will help you stop the negative chatter in your own head and focus on what's going on outside of your head. You already know what's going on in your head; what you need is to interrupt that in some way. Also, try to list the things that you are grateful for; write them down every day (they may be the same things, or they may be different every day). Do you breathe clean air and drink clean water? Not everyone in this world has those things. Do you have family and friends who love you? Not everyone does. Again, trying a little bit every day to think about what we are lucky to have can help train us to focus on the positive. When you feel up to it, try to do little things for other people. Help a neighbor pull weeds from a garden; wash someone's car. It is surprising how good little things like that can make you feel. Little by little, pull yourself back into seeing things in a more positive light. It won't happen overnight, but if you try to do this every day, it will help. Remember that there are lots of us here who are cheering for you. Reach out anytime.

Laurie

Padfoot, thank you so much for the kind words and the advice. I have now been in touch with the Crisis team (a team of mental health specialists). They are going to call me and come and see me every day for a while... as I was waking up every morning wanting to end it all and going to bed every night wondering why I hadn't done it yet. The guilt because of how I was feeling was a huge pressure, and there are people who have been through far worse than I have, but the darkness was all-consuming and I kept getting lost in myself. Anyway, I will try my hardest to follow your advice every day. Thank you again.    

Loki, I am so glad to hear this. This is your first (and most important) step to wellness. If I could add one more thing - yes, there are lots of people who have been through worse than you have, but does that make your experience any less valid? Sometimes, when we compare ourselves to others, it does more harm than good. We say, "Oh, that person got through it, so why can't I just pull up my socks and get on with it?" The reality is that we really don't know to what extent other people are suffering because we generally only see what's happening on the surface. So, when we compare ourselves, it can make us feel inadequate, which is just another burden. The truth is, we are all just human beings who are struggling to live a life while we cope with whatever has been tossed in our path. Take good care of yourself, Loki, and please keep us up to date.

Laurie

Hi Loki, I am so glad you decided to reach out for help. You have already gotten some good advice. One thing that helped me was the fact it saved my life two ways. Not only the doing the ostomy but because of the test for that they saw I had a kidney about to shut down. Still, we go through depression for what we have to go through. But it does get better with time once you figure out what works for you. I have learned so much from this site because I did not have any help. But there are so many people here that have a lot of good advice about all kinds of problems. If you check the forum, you will see how many people have gotten advice to help them with problems. So get the help you need for PTSD and when some problems come up, feel free to ask here. Best wishes and stay safe.

Hi Loki,

All that's been said is the heart of this site's kind, caring people with life experiences each of us can benefit from. I have. I didn't have anyone to share with until I found this website. Here I have found people I have talked and discussed this new life with (new normal).

You are welcome to correspond with any of us.

Keep in touch, talk, ask questions, anything even if to just vent. ...Regards, mtnman.

Hang in there, Loki.  I suffered post-operative PTSD too, but it can be put behind you by positive attention to life outside yourself.  You're surrounded by good things, from friends to ferns in the field, from a good drink to a good read.  Our inborn sense of  humor is capable of getting us through a lot.  I'd even recommend reading some good joke books as a reminder of how funny life can be if we allow ourselves to look about at it and enjoy it with all its absurdities, beauty, and inexplicable hurdles.  My surgery/trauma was at the age of 21.  I'm 77 now, with a productive life behind me.  Without my sense of humor and wide view, I doubt that I'd have made it.  They cut out my guts, not my balls...    Stay well.   HenryM

Hi Loki, you went through a trauma, which could be the cause of PTSD. And after huge changes to one's body, it's not unusual to have a bout of depression. And then there is being faced with managing the stoma. I know it seems like a lot of "stuff", but you just have to separate and focus on the things you can or can't do to help yourself.... I'm Marsha, and I have had my ileostomy for over 50 years, since I was a kid of 15. I'd spent years in and out of hospitals with surgeries, treatments, separation from my parents and my family... I cried my way through my teens..... all I wanted to do was get well and get home, and back to school. I didn't even know surgery was an option until my doctors and my parents brought it up.. I was so angry. Why did they make me waste all those years of my life when there was an alternative? Well, I had the surgery, an ileostomy, and I won't say it was easy. It was the dark ages regarding supplies, but I met other older and young people and learned to manage. I was thrilled when I was able to get back to my real life.. I went back to school, did social things that kids will do, dated, and married young. I had two children (both who inherited inflammatory bowel disease - Crohn's and ulcerative colitis). That was my worst nightmare realized. But I was strong, and medications had changed, and my sons didn't need to have the surgery their dad and I had. Fast forward..... about 20 years.. With my kids grown, and me working as a teacher, I managed to live a full and active life, traveling. But then, one by one, I started to develop related medical conditions. Diabetes (from all the steroids I'd taken), osteoporosis for the second time.... degenerative disc disease. I was diagnosed with hep C and went through horrible chemo twice. The first time didn't work.. I have ongoing liver issues from the hep C, arthritis that affects my knees (but I'm not a candidate for surgery). Little by little, I was becoming older and more disabled than I had been as a kid.. When a kidney surgery went bad (my throat swelled up) and I was intubated for 4 days with a breathing tube, I came out of that with depression and PTSD. I just couldn't stop crying and began to be afraid to go out of the house. Sigh. Not to belabor the point, but the last 5 years have been about rehabbing my body and mind, to find a way to cope with all that had and would continue to happen. I was seeing a therapist, but found I needed more, so I went into an IOP (intensive outpatient 3 days a week for about 7 months). I finally came to peace about what I could improve and what I couldn't. That my body was deteriorating, and would probably continue, was a given. But I fought that with physical therapy and days at the gym, to reclaim as much as I could... I'm coming to accept my deterioration and the end of my days of travel.... But I'm grateful for my friends and my past experiences, and for each nice day...... and especially to be able to walk and talk at the same time.. Other friends are also getting ill, with diseases or strokes, and others are taking care of ailing spouses... How you manage your time and live your life now..... is more important than what will happen in the future or what did happen in the past. It's not easy..... but you can do it... Some weeks, I cry more than others. I give myself the chance to mourn my changed circumstances.... and then I get on with the business of living my life.... Best wishes, Marsha