Adjusting to Life After Major Surgery and Disability

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504
eab3691
Aug 31, 2024 7:41 pm

After my surgery in May, my life has changed dramatically. I'm signed up for disability at the doctor's orders in light of everything, so my working days appear to be over (I also have an incurable but treatable form of cancer that I've had since 2005). I'm 61. I'm not adjusting well to having a colostomy bag and the limitations it gives, but I'm trying my best.

How do you guys deal with it? Was it difficult to come to terms with life-changing surgery? I'm not ready for the glue factory yet, and still want to enjoy life as best I can, but this surgery—now bag—is making me live my life differently than I was used to...

I'm not feeling sorry for myself. I'm grateful I'm still kicking, just wondering how you guys adjust to this lifestyle change.

warrior
Aug 31, 2024 8:11 pm

Welcome. You will get an eyeful of information from other members chiming in. No worries. We got you... we get you, too.

As my friend in Nebraska would likely say, "99.8% of this worry is in your head. Get over it—the sooner, the better."

That's almost a precise quote. (Waves to Alex) 👋

All of our heads were right in the same place as yours once.

Some of us got over it.

Others are working on it.

Others feel stuck like you do.

It's management. How do you manage your cancer?

There will be a time you give no thought to this bag... and do whatever the hell you want.

Our experienced members know their... um... shit... so don't be shy about asking anything.

Here, in this group of fine, knowledgeable peeps, there is no such thing as TMI (too much info) from you, your story... your pain...

🎶 "We'll get by with a little help from your friends" 🎵.

I can safely speak for some of the members that we are glad you are here. Welcome home.

 

Gray Logo for MeetAnOstoMate
What Members Are Saying
Posted by: Justbreathe
MeetAnOstoMate website turned out to be a lifesaver for me. I say this because, for me, this ostomy journey was a devastating event both physically and mentally.
Here, I found folks who understood my feelings even better than my family or friends could. Only a fellow ostomate can understand how you really feel.

Information sharing is key, as well as support and understanding, to ultimately bring more harmony into our ostomy life journey. I found here, virtually no ostomy questions that are not touched upon. Questions which some might feel, may be too trivial to contact a doctor about or even too shy or embarrassed to ask their own doctor about. They are all addressed here.

For me, anonymity was very helpful in seeking answers to each phase of this life changing medical and mental event. Sharing initial trauma feelings, ongoing support and finally acceptance was what I found with my membership here. I am not sure what my mental and physical attitude would be today without having found this site.

Additional benefits included: finding products and ideas to help with daily maintenance, innovative ideas and as a bonus - some great humor.
After all “laughter IS the best medicine”.

I have been a member for 3 years, an ostomate for 4 years - yes, I certainly wish I would have found it immediately after surgery but so very thankful I finally found it when I did as I truly believe it turned my troubled depression and situation into a more positive attitude and acceptance.

Sincerely,
An Ileostomate nicknamed Justbreathe 🫶🏼
Bill
Aug 31, 2024 8:26 pm

Hello eab3691.
Welcome aboard!
I try not to dwell to much on what it was like in the beginning. However, I did write my thoughts down in rhyme as I went along, so you can get a drift of what it has been like if you read some of the early works in the 'collections' section. 
All I can really say is that I learned how to 'manage' it and all the curved balls that came my way over the years. 
I feel  that the best thing I did was not worry too much and - as the song says: "Always look on the bright side of life- de de, de de". 
Best wishes

Bill

xnine
Aug 31, 2024 8:30 pm

What type of work did you have? No heavy lifting for a few months. You do not want a hernia. I am retired but take care of the house and garden and snow in the winter, just like before.

eab3691
Aug 31, 2024 8:36 pm

I was in the IT field and could go back to that, but the market is dried up. Nobody wants an IT analyst with 20+ years of experience anymore.

 

How to Get Back to Fitness After Ostomy Surgery with Ryan | Hollister

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AlexT
Aug 31, 2024 8:50 pm
Very helpful

What kind of limitations does your colostomy have on you? 

TerryLT
Aug 31, 2024 9:10 pm

How do we deal with it? That is a big question, and everyone's answer will be different. Partly because we are all in different places on this ostomy journey. Some newbies are doing great and adjusting well, and some old-timers are still not happy with their lives. Your attitude will be what determines the biggest part of your adjustment, and it sounds like you have a good one, but I'm wondering about the limitation you are referring to. What has changed in your lifestyle and why? Most things you did prior to ostomy surgery should still be open to you. There are lots of ways of managing ostomies to make your life easier, but you would have to be more specific in what you are referring to. I'm glad you found us. There is a lot of collective experience and knowledge in this group, so don't be afraid to ask questions. Nothing's off the table, and you won't gross us out by being graphic! Once you've got the physical part of the adjustment under control, the emotional part is easier to come by. For myself, my adjustment came quite easily, even though I had some challenges along the way. A big part of that was having a supportive partner.

Terry

AlexT
Aug 31, 2024 9:15 pm

At least 1 person reads my posts. 👍😁 

warrior
Aug 31, 2024 9:27 pm

Not only do I read them, buddy. I write them down 🤣

Kiwi Al
Aug 31, 2024 9:57 pm

I have an ileostomy after suffering from UC for 10 years. It's actually given me a better quality of life than I had before. I was determined right from the surgery that my stoma doesn't rule me; I am in control. I do everything now, 18 months after surgery, that I did before. I work, I go to the gym, I swim, go fishing and hunting, and I am 65 years old.

Sure, there are adjustments that have to be made, but I believe most of the limits we feel are caused by the top 2 inches—our brains and minds.
In my opinion, life is great because the alternative doesn't sound like fun to me.

w30bob
Aug 31, 2024 10:43 pm
Very helpful

Hi Ron'ster,

What those who weren't expecting to be ostomocized go through is pretty textbook in terms of the steps. Those are:

#1 Anxiety: You've experienced a life-altering change, and it usually sounds something like, “You routed my ass through my stomach, and now I shit in a bag????? Are you kidding me? WTF am I going to do now… who's going to want to be around me… I'm a monster!” This is typically accompanied by feeling lost, confused, and a bit fearful.

#2 Anger: This sounds like, “Why the hell did this happen to ME??? What did I do? How am I going to live a normal life now???” This step usually involves a lot of swearing, soul-searching, and generally being pissed at everyone and everything.

#3 Acceptance: You're not happy about the situation, but you eventually stop feeling sorry for yourself and realize your new reality isn't going anywhere, so you distinguish between what you can change and what you can't. You start to accept your situation, which then means you can start to make the best of it. This is also where you realize you're not in the best place… but the alternative would have been much worse. With that mindset, you can now start dealing with your newly altered reality.

#4 Adjusting & Adapting: This is where you figure out what works for you and what doesn't. What you can still do and what you can't. You'll also want to get as smart about your situation as you can, since only you are driving this train. There will be a lot of trial and error, but you'll learn from everything you do and use what you've learned to get your life back to as close to normal as it can be. You'll also surprise yourself about how close you can get to what was your former life. This is where you realize things really aren't all that bad. They're not perfect, but no one's life ever is.

#5 Action: This last step is where you take everything you learned and go out and kick some ass. You're back, maybe a little worse for wear, but you're back and ready to go. This is where you look back at all the previous steps and say, “What the hell was I thinking… I got this!” Then you try to share your knowledge and experience with those who are struggling to get to this step you're now at.

And the circle is completed.

Hang tight, brother… we're all on the same ride as you, just sitting in different cars. And we're all going to be all right, including you!

And no… 'ostomocized' is not a real word.

;O)

Rancher
Sep 01, 2024 12:13 am

Hi w30bob. I'm 8 weeks out from ileostomy surgery now. I like your "ostomocized textbook steps" to recovery, especially the "hang tight brother," and your final paragraph.

I too am working my way through the steps, but there is one more... That's the one where you put on a fake face or maybe a better way to look at it is a brave face to the friends and (some) family members who know you have had the surgery when they ask, "How's everything going?" You try to convince them and yourself things are going as well as can be expected. You also have to put on a brave face to your kids to show them everything will be okay, even though this really sucks.

It's kind of like climbing a mountain; if you focus on your feet, you will get there. If you look at the top, you will get discouraged.

I know I'll make it to the top.

Thanks for your comments.

 

 

 

w30bob
Sep 01, 2024 1:14 am

Now you know why I don't climb mountains!!!

;O)

Beachboy
Sep 01, 2024 2:20 am

Make that... 2

Beachboy
Sep 01, 2024 2:21 am

I memorize them.....

warrior
Sep 01, 2024 2:38 am

Memory? Wut Dat?

Not only do I suffer from IBD, U.C., C.D., R.A., DVT, but C.R.S. is the worst.

(Can't remember shit).

Therefore... I ask for photos! Another wave to Alex👋👍

Beachboy
Sep 01, 2024 2:51 am

I received a surprise permanent colostomy in Nov. 2022, returned to full-time work 3 weeks post-op. Showed this new addition to my coworkers, who were fascinated... that the red thing in the bag... was my intestine. 3-4 months post-op, developed a parastomal hernia. Alas, the beast sticks out quite a bit. No hiding that puppy. My wife has gotten used to it. I went out today with in-laws to lunch. My stoma was tootin' up a storm. I just chuckled and told the wayward foghorn "shoosh." Everyone laughed, and lunch proceeded normally. Had Jambalaya with red beans and rice... chewed very well. But damn yummy.

It's only a problem... if you make it a problem. Do I like the crimson spud? No! Not... one... bit. But it saved me from pushing up daisies. I like being on this side of Terra Firma. I was emotionally trashed after my medical adventure. I'm still fragile. Must be careful relating the experience to others, lest I melt into a puddle of tears.

I got burned with stage 4 thyroid cancer back in 1983. Prognosis: unfavorable. I've lived decades with uncertainty.

You'll get there. Takes time & tears. Many Ostomates here overcame far rougher, nastier, life-debilitating situations, and live productive, happy lives. They inspire me to press on.

eefyjig
Sep 01, 2024 3:04 am

I'm not in pain from UC or a j-pouch anymore. The elimination of pain—in my case, after getting a stoma—was a big factor in accepting having to wear a bag. I felt like I didn't have much choice. It was either that or be in pain, anticipate it, or be exhausted after getting it under control. My quality of life was lousy. I let go of my healthy colon because it wasn't coming back, and wishing it was would only make me depressed and anxious. I'm not sure of your situation, and I'd never say just snap out of it, but I hope that, with time, you find yourself doing what you've always done and thinking less about your bag while doing it. Time definitely helps!

eab3691
Sep 01, 2024 3:58 am

Can't lift anything heavy... I can't take our garbage out anymore... can't bring in the groceries (if they're too heavy). Can't exert pressure working on my truck... can't change my oil in my truck... things like that...

eab3691
Sep 01, 2024 4:01 am

God bless you for your kind words.. I'm praying for you.. I too have cancer.. polycythemia vera.. not deadly immediately and is treatable but no cure.. I've had it 20 yrs and I know it will contribute to my death in the next few years.. if I can reach 70, I'm ahead of the game

AlexT
Sep 01, 2024 7:29 am

I can understand not lifting heavy stuff, but everything else you listed is very doable. You may have to adjust how you do things now, but nearly everything is possible.

AlexT
Sep 01, 2024 8:12 am

I remember being on chemotherapy, chemo fog is real, I could hardly remember what day it was. Thankfully, those days are over. 

bowsprit
Sep 01, 2024 10:53 am

Alex always urges those under a dark cloud to get on with it. "Keep walking," as the ad for Johnnie Walker says. On the other hand, facing difficult times is not all bad news. Many lessons can be learned from adversity. Resilience, for one, the ability to bounce back, to keep going when faced with setbacks and obstacles. Many of us are probably more compassionate and empathetic now than we were before lightning struck, as well as more appreciative of the support we received during those dark times. "Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." - Gibran.

 

 

warrior
Sep 01, 2024 11:32 am

Well said. 👍

ron in mich
Sep 01, 2024 12:56 pm

Hi EAB, I see no one has mentioned it, but you may not have to wear a bag if you are a candidate for irrigation of your colostomy. Look it up on YouTube and talk to your surgeon or ostomy nurse. My brother-in-law was in IT at a local university, and when he retired, he was offered several jobs. He golfs in the morning and works from home a few hours in the afternoon.

 

Riva
Sep 01, 2024 3:35 pm

Hi and welcome. All I can add is: do not let wearing a pouch define who you are. You've got this. Go and enjoy life to the fullest. 🌈

infinitycastle52777
Sep 01, 2024 4:08 pm

It can be hard to adjust to things at first. But after some time, things won't be so new, and you will get used to having a bag and taking care of it. If you still want to be active, try volunteering. It will give you a good feeling, and usually, you can pick your hours and what you are willing to do. So no heavy lifting can be part of your requirements for your volunteering. I do volunteering at our local food pantry. I hand out the fresh produce to people, and it is nice to be doing something to help others out, and it makes me feel good about myself. I do it for only 3 hours at a time, so I can plan around that time with taking care of my bag and all that good stuff. Plus, there is a bathroom if I need one. Usually, though, I volunteer at a time when I have lower volume output. You will get the hang of things in time. Try to be patient with yourself.