Coping with Ostomy: My Mental Struggle

Dogen\'s bag
Feb 20, 2023 6:54 pm


This is less of a question and more of a need to write this out to feel better.

I am not doing well.

I was surprised in December to wake up to a reality that included an ostomy, something I was unprepared for and was a total shock.

My body is healing, my family is amazing, my work is accommodating but I am not well.

I practice zazen, I walk, I eat, I joke, play music and I laugh but I am not well.

I dream of my time in the hospital but I can't recall most of it during waking hours, lots of body horror, always my own. I know the old saying of "time heals all", the problem is that time is different for each of us. Blah. I assume this is hard for all and I am nothing new, I see it's a huge community, but I still feel like I am the only one that has this, I needed to "voice" this.

Thank you.

Feb 20, 2023 7:29 pm

Regardless of the reason of how we get to our ostomies, it can be a hard reality to accept whether we have time to think/plan for beforehand.

Know you're not alone. The people here get it.

I had started an IG blog as a therapeutic way to process my journey. It helps to say what you are feeling out loud or in this social media phase, typing it and know it will be read.
I'm not pushing in any way, but the psych team that works with my GI team has been such a vital part of my recovery process. I was making notes today of things that I want to address at my next session. I'm in a position where a lot of people come to me as a safe place to talk about what's going on with them, but after my first surgery I looked around and there was my family... my closest girlfriends/cousins live out of state and I knew I needed more than they give me when it came to emotional support.

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First off, this is a pretty cool site with 34,000 members who truly understand you.

It's not all about ostomy. We talk about everything.

Many come here for advice or to give advice, others have found good friends, and some have even found love. Most importantly, people here are honest and genuinely care.

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Create an account and you will be amazed by the warmth of this community.

Feb 20, 2023 7:51 pm

Welcome. You didn't say how long you've had your ostomy but take it one day at a time and it will get better, we've all been through this.

Dogen\'s bag
Feb 20, 2023 9:31 pm
Reply to CrappyColon

Thank you. :-)

Dogen\'s bag
Feb 20, 2023 9:33 pm
Reply to AlexT

Hi Alex,

I received the ostomy Dec. 4th, 2022, a couple of months back. Thanks. :-)

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
Feb 21, 2023 5:14 am

I speak from 23 years of "accepting". You are grieving. Grieving takes a fair amount of time. It's okay to grieve. It's okay to not want this to be your reality. It's okay to wish you could go back to what you knew. I hope you will allow yourself to express your sadness and be gentle with yourself. If you don't feel like laughing, don't fake it. In the long run, your grief will lessen and acceptance will grow. My surgery was an emergency, but I had had Crohn's for many years so in effect, the surgery stopped a lot of my pain. I'm not sure that's the case for you. Keep posting and don't worry about being judged. Everyone goes about this in their own way. Jeanne

Audrey Warren
Feb 21, 2023 7:03 pm

From what you write, you remind me of the ad for an antidepressant where a person walks carrying a happy face covering her real face which is hardly happy. I have been clinically depressed and have general anxiety disorder since my first husband died from testicular cancer. He was 31, me 26 and we had a 15-month-old son.

Depression runs in my family; my father was bipolar with extreme highs and lows; my mother was an alcoholic, I was fine until my husband died. It was the trigger for my depression.

Having gone through what you describe, it was possibly a trigger to your depression; you are suffering both physically and mentally.

My guess would be that a lot of people on this site have other shit going on (pun intended). I see a shrink twice a month and have been on Lexapro for years because I don't respond to any others. Try finding a good psychiatrist/therapist (which sometimes takes a while) and get in a place where you don't have to wear a mask. You are lucky to have good support but a good trained professional couldn't hurt.

One day at a time. Good luck.

Feb 27, 2023 6:57 am

Hmm, surgery, this is traumatic in the literal sense. I don't remember much either, but why would I with 5 hours of forced unconsciousness followed by days on morphine and other powerful analgesics.

I can't offer much help here other than encourage self-compassion - easy to say - hard to do.

A book I found interesting addressed the idea that our bodies remember events in our lives without conscious recall 'The Body Keeps the Score' by Bessel Van der Kolk.

Dogen\'s bag
Feb 27, 2023 3:41 pm

Thank you all very much for your responses, it helps. :-)

Dogen\'s bag
Feb 27, 2023 3:43 pm
Reply to jeanneskindle

Wow. This hit me like a truck.

I realized this is exactly what is happening.

Thank you.


Mar 01, 2023 5:40 pm

I've always been a glass half full person and through all of my surgeries, medications, pain, and healing, I still was pissed that I had to go through all of this. WHY ME?!?!?!? It was a struggle for about two weeks during recovery, where I wanted to give up and not even try anymore. I have an outstanding wife and daughter, and I still wanted to give up. Being the glass half full guy I am, one day I said this isn't the real me and I got out of bed, grabbed my walker, and went to the kitchen and made myself my first meal. I know we all have different ways of dealing with this new normal, I hope that through this site, family, and friends you'll find that defining moment and get back to the real you!

Mar 02, 2023 8:24 pm

Ultimately, this situation can be a tremendous opportunity for spiritual growth. Allow yourself to 'grieve', but also use your meditation (seated or walking) to not just accept, but embrace the impermanence and emptiness of our station.
Stay focused and mindful on/of each moment.
Let your calm abiding lead to special insight to help you through this difficult time.
I say this for you and also to remind myself and any others who follow a similar path.
"I honor the place in you where the entire universe resides. A place of truth, light, love and peace. When you're in that place in you and I'm in that place in me- we are one" (sic)

Mar 04, 2023 2:34 am
Reply to Dogen\'s bag

You are so welcome, in every sense of the word. Jeanne

Apr 13, 2023 7:12 pm
Reply to Dogen\'s bag

How are you doing?

Dogen\'s bag
May 16, 2023 6:13 pm

Hello friends,

Time has passed since I made this post and I wanted to say that I really do appreciate each and every one of you that wrote. It really made a difference, even if I didn't know it at the time.

It is amazing how a few months make all the difference in the world. It's better, life moves on.

Thank you. :-)

-Dogen's bag

Dogen\'s bag
May 16, 2023 6:14 pm
Reply to CrappyColon

I am better. I know now that I was at a low point and needed some light to shine into the hole, posting here gave me that light.

Thank you for asking. :-)

All the very best to you!

May 16, 2023 6:20 pm
Reply to Dogen\'s bag

I'm so happy to hear you're doing better! Don't be afraid to reach out if you get into a low spot again. All the best to you!