Dealing with Emotional Baggage after Ostomy Surgery - Seeking Support and Advice

Hello there. In April 2022, I was rushed to the ER due to a ruptured ectopic pregnancy. I had found out I was pregnant a few days before, and now on my way to the operating room table, I was told I probably would be losing my fallopian tubes. Never had children, 38 years old, and when I woke up from surgery, I was told I have one good tube left, which I was happy about. A few days of being in the hospital, I had tremendous pain, which the doctors thought mimicked appendicitis. Tests after tests, nothing found, I was rushed back into the operating room. When I finally woke up, I was in tremendous pain, colostomy bag placed, j pouches and all. I was told I had a hole in my colon, and it was partially removed. I was in the hospital for close to a month with everything that can go wrong happened - multiple blood transfusions, serious infections, fevers, etc. I pretty much almost died more than once. The next two months were filled with so much pain, and on top of that, a wound vac to help close my gyn surgical wound. That wound vac sucked so much, but it helped heal my wound. Now in month three, I'm just starting to walk again but have a slight hunchback from all the issues I had. Long story short, this has been a whirlwind, and emotionally I've been up and down. Of course, I have family support, but I just would like to hear from you on how you dealt with your emotional baggage. How do you keep a positive outlook? I am so appreciative that I was saved, but I also feel selfish for feeling sad, and I think the ostomy bag has been so depressing. Soon I'll be back at work, and I don't know how I'll manage that as well along with bag changing and so forth. But really, I came to this group so I can get some help navigating through the emotions. I would love to hear your thoughts.

Welcome, I'm sorry you had to go through all that and will be praying for you. I am a plumber and have had an ileostomy for 26 years. The way I have kept positive is through God and that I live in America, and not a third world country or Ukraine. As far as emotional, because I have so much baggage, I changed my name to Samsonite, mostly because American Tourister was too hard to spell. We are lucky to have access to good medical and emotional support and all the great people on this site, so keep your chin up. We are blessed people.

Good luck and hope that helps.

Cplumber

Hello Newostimate2022.

Welcome to this site and thanks for posting your story. For many people, coping and managing the emotional side of things can be almost as traumatic as the physical side. It is quite normal to experience the whole gamut of emotions during and after such traumatic events and each of us needs to find ways to navigate the process of adjustment according to our skills, abilities and inclinations.  

My own approach to management of ‘stuff’ such as ‘wayward’ emotions is to document the feelings and their effects in verse.  This allows me to focus upon what is bothering me at the same time as being a ‘distraction’.  After I have written down my thoughts, I am able to compartmentalise this ‘stuff’ and store it in the written word rather than have it continuously swirling around in my head and interfering with my otherwise ‘normal’ life.  This is what I call ‘management’ of the problems.  Often the process does not make the problems go away, but it helps me to think about them differently.

I like to think of it in gardening terms: i.e. I’ll take all the ‘shit’, put it in a suitably ‘contained’  place (poetry) and view it as ‘fertiliser’ to help me grow healthier and stronger.

That’s just the way I deal with emotional  things and you can find many of my poems on the subject of stomas in the ‘Collections’ section.

The very fact that you have written to us to share your experiences is a good start in moving forward and you obviously have a great deal you can share with others who may be going through similar emotional upheavals. (It’s good to talk!)

I do hope you can find a way to make these experiences more positive for yourself.

To give you a sense of what I am saying, I will share with you two of my rhyming cogitations surrounding this issue  

Best wishes

Bill

VENT A RANT.

I want to rant and scream and shout

and show my discontent.

I want to let the venom out

‘till all of it is spent.

So listen to me rant and rave

then you might understand.

The way you see me now behave

results from life’s crap-hand.

Sometimes I’m sick of all the shit,

the troubles and the strife.

I wish that I was rid of it

the pains and banes of life.

If my life was sweet and fair

I would not need to rant.

Because my life seems so unfair

I just need to decant. 

Pour out my feelings one by one

and empty out my soul.

So anyone and everyone

can see in my hellhole.

It does me good to shout and scream

take’s strain from off my brain. 

What better way to let off steam

it helps to ease the pain. 

Life has been both cruel and mean

to leave me as I am.

So now I need to vent my spleen

as often as I can. 

As I say, life has a way

of  being most unkind.

A rant a day keeps life at bay

and lifts the troubled mind. 

So let us all appreciate

the rant in all its glory.

For rants are so appropriate

to tell a bad, sad story.

                               B. Withers 2011

P23 In: My Ostomy World: Trilogy 2014)

TALKING ABOUT MENTAL PAIN.

I don’t talk much of mental pain

though often I may feel its strain.

I sometimes pause to wonder why

silently inside I cry.

It’s good to talk of painful things

and all the crap life often brings.

Talking is the thing I find

will help to heal my troubled mind.

I have no trouble to explain

the ins and outs of body pain.

I don’t know why I have this notion 

that I can’t express emotion.

But when the pain is in my heart

I really don’t know where to start.

I find that I will hesitate

then time has passed and it’s too late.

I get distracted from the task

and then it’s all too much to ask.

I don’t seem able to convey

all the things I want to say.

I will try to change the subject

in order to myself protect.

I cannot seem to tell it all

or open up that well-built wall.

I’ve learned the lesson very well

how to retreat into my shell.

But there’s still something troubling me

how the hell do I break free?

This is just the way things are

my wall, my shell, the prison bar.

I’d like to shed my shackle-chain.

then maybe I’d be free again.

                                B. Withers 2012

                              (P24 In: My Ostomy World: Trilogy 2014)

New ostomate 2022, we all have our stories and yours is intense. Everything happened so quickly for you and your ostomy wasn't caused by a bowel issue, just a hole (from your prior procedure??) You're mourning your pregnancy (I'm so sorry), you're trying to absorb the idea that you have an ostomy, you're recovering from a horrific experience in the hospital - you were beaten down. This also just happened and so you're still in it, really, still reeling. Soon you'll need to keep your "next step" in mind. This helps to keep you focused on physical things and helps to quell anxiety. You said you have a J-pouch - does that mean your ostomy is temporary?

Hi new ostomate,

I am very sorry for all you have been through. I am pretty new to ostomy life as well. I had my surgery for my ileo in Jan. of this year. And I have to go back to have it revised. God is who gets me through and has gotten me through. I truly hope you can find peace and if you ever need to talk, remember you are stronger than you know and you have already overcome the hardest part.

Hi new ostomate, I've had my ileo for 30 some years after battling colitis and being very sick and run down. Then, trying to recover from surgery, but with my wife making my favorite foods and some walking exercise, I slowly recovered. But mentally, I was down in the dumps and had anger issues as I couldn't do stuff I would normally be doing. But in the back of my mind, I kept thinking, "I gotta get through this for my wife and daughter." It's not easy, but it gets better over time and you take control of your ostomy.

Ty

Wow, very beautiful. Your way with words in poetry is so nice. Thank you for your reply.

They think from all the trauma and blood and fluid buildup it could have caused the hole in the colon. They removed it partially but don't know how much but yes they're telling me I can do a reversal in a few months.

Thank you so much. There are days where I feel not so strong, which has been hard. Getting your mental and physical on the same page is a challenge sometimes.

I wish you the best on your revisal.

Thank you. Yes, if it wasn't for my mother and partner, it would have been more of a struggle. But yes, the anger portion, I felt it here and there. Sometimes it felt like I was burdening them, and that made me feel angry and sad. But every day, I'm trying to be positive. It just has been a challenge.

Hi Newostomate2022...1st off, please know you are not alone in this battle...

2nd...I get what you are feeling and saying. In my case, I thought I had a bladder infection, then IBS. After a few months of pain, I visited the ER and had emergency surgery for a perforated bowel. They completely removed my ileostomy and I now have a bag attached. I am also undergoing chemo for stage 4 bowel cancer at 59 years old.... I still, 3 months later, have those dark days every now and then. I allow myself that time and have a private pity party. Then, I reflect and say, "This beats the alternative. I could be dead, missing all my favorite things and people in my life."

You alone have to ride this new roller-coaster ride that everyone is scared of unless they ride in our seats. It's okay to be confused, angry, sad, frustrated, and HAPPY.

You are still who we were and are, just with a bag attached!!!! Be the best you that you can be, live, laugh, and love!!!

Smile on

Your homie with a stomie (2022)

Tracy....

Thank you very much.

Anytime, my friend. If you ever need a shoulder or ear, you can always reach out to me, even in a private message...

Tracy

Oh Bill,

What a way with words.

As I read your prose, I couldn't stop my tears. It really hit a nerve, I guess, as we deal with our challenges.

Thank you for sharing.

Hello OldChronie.

Thank you so much for taking the trouble to share your thoughts on my writing. It is really important to get feedback (preferably positive) on literary endeavours as once these things have been compiled and published there is often little or no feedback from whoever reads this stuff.

As my wife often reminds me: My type/style of poetry so often reflects different forms of 'sadness' and 'badness', that people find it hard to 'enjoy'.

However, the flip side to this is that it can be 'appreciated', especially by those who may have been through similar experiences. 

Best wishes

Bill   

Hi there!

So sorry to hear your story, but very glad to know that you are moving about and out of the hospital! I am new at this, colostomy 6/1 due to a leaking bowel resection surgery that I had on 5/11. Good news is that I avoided being septic by a couple days and they were able to remove the cancer in my first surgery.

I go through times of being pretty sad or annoyed and then beat myself up for not being grateful and telling myself so many others have it way worse than I do. But, I have finally learned that my feelings are totally valid and I don't have to "Minnesota Nice" myself into pretending I shouldn't be having them. If I need to feel frustrated or cry, I let myself do it and then I get it together and move on. This has been really helpful for me.

Last night I was totally pissed off because of a bag malfunction and I wasn't the nicest to my darling hubby. I finally realized I needed to go into a different room to get some angry alone time. Then I came out and apologized before bedtime for being grumpy and talked through the issue with my husband so I could get it out and also get some ideas on dealing with my bag. Realizing I need space and taking it, cleaning up my bad behavior and then problem solving meant that I felt great by the time I got into bed. Next goal, realizing I need space before my total grumpiness takes the air out of the room.

I also did a lot of pushing away of my friends in the hospital and when I first got home because I didn't want to talk. Luckily for me some of my friends lovingly forced themselves into my home and it made me feel so much better to sit on the couch and talk shit with the girls. Now that I am on my feet, I am taking little mini dates out of the house to have lunch. Advice here, let your friends in.

And if all else fails, RETAIL THERAPY! I have been having a lot of fun finding clothes that work with my ostomy. Yes, I end up sending a lot of stuff back, but those items you find that make you feel dare I even say, cute as hell, are a real confidence booster.

Take care,

Elle D.