Adjusting to Life Post-Surgery: Struggles and Support

Hello all, 

I have to say I am very glad to have this forum full of people who understand. I am struggling a bit at work knowing that no one really understands what I went through or am going through. Sometimes I feel so alone. 

8.5 weeks post-surgery. I've been back to work for 2 weeks. I'm a high school choir teacher. It's been a bit tough getting through the days, but each one is better than the one before. 
I stress about having a leak in front of a class.
I am also having to adjust my wardrobe… my stoma is right at my waistline so I can't wear clothes I used to, like jeans. So it's leggings and a dress. 
My eating habits are changing as well. I have to eat every 2-3 hours… so I snack during class. (My stomach shrunk post-surgery and I can't eat large meals). 
All these changes are a lot sometimes. 
I'm glad to know I have this group of people to help support me as I am needing it very much. 
Thank you, 

Rhonda 

You've come a long way, Rhonda...

And the best is yet to come...

Believe it or not...

Stick around... we are here.

Well, look at this. Within 12 hours of your post, several people have replied already.

We got your back too. 😊

Hi Rhonda,

Oh yeah, we understand. And no matter how bad of a day you have... you can rest assured someone on here has had a worse one. You're never alone... we're all just a few keystrokes away. And you'll find someone is always minding the store here. Sorting it all out in the beginning is always tough. But when you find your new normal and you look back on all that you've been through, you'll see you're in a better place. Accidents happen to everyone and over time you'll learn to just laugh them off. Comes with the territory. So don't fret... you'll get comfortable and confident with your new front-butt. It just takes time... so hang in there.

;O)

Hi Rhonda,

It just takes time. I'm a year post-op, and I'm finally getting used to having my colostomy. Unfortunately, I developed a peristomal hernia, so my stoma sticks out quite a bit. No hiding it. Looking at pictures of myself, I look lopsided.

I went back to work 3 weeks post-op. It was hard. I told all my coworkers I had an ostomy and showed it to the curious ones.

Emotionally, it took me 8 months before I could even talk a little about my medical adventure. I still can't go into details. I've told my wife a little bit but avoid talking about my feelings of hopelessness as I was wasting away on a hospital bed. We've all been in that dark place.

Take each day as it comes. Time will pass, and you'll be better.

Take care,

Dan

Hi Rhonda,

You are doing very well for 8.5 weeks. Keep chipping away, but try not to do too much. Don't overdo it; you'll get there.

Hello Rhona.
Just to welcome you aboard and to say that I agree with what the others have said so far.
Best wishes

Bill

Rhonda, you're going to be just fine. The way I dress changed too. Rectal cancer reduced my weight from 264 to 195. Although I like the big loose fit, I went from a size 26 down to an 18 and found I cannot put anything over my colostomy bag. So, I wear pants that are made of stretchy material. I fold the front of my pants up under my bag and wear larger, longer tops. I also bought bag covers. The cover protects my bag should I get a leak (lol, my bag just exploded at 2 am and over an hour of Old Faithful spewing). I was in the hospital for 2 days on orders: nothing by mouth. When I got out, of course, I went to Texas Roadhouse and had steak, so of course, I spewed all over the place. But such is life. If you feel a little uncomfortable with your stoma, your ostomy, or your ileostomy while you get a little looser clothes, I found it's better to let the bag hang out of my clothes than in them. I also found that if I eat a little bit every few hours, there's less chance of leaks, spew, or accidents, whatever you wanna call them. With all the good people here, you'll be just fine. Welcome to our group. Have a blessed day.

G-Day Rhonda, They don't understand what you went through, so why don't you not only tell them but show them your stoma bag. All my friends were very interested and wanted to know more, and they now say we understand what you went through. Regards, IGGIE

Rhonda… Bless your heart - you can and are doing this each day, and hopefully, it will get better as time passes. The good news is you are surrounded by music - a great healing factor along with hopefully some humor.
Being retired for many years already, I cannot even relate or imagine “going back to work.” Knowing my own feelings after my intro to “stoma,” I am in awe of those of you who must return to work and normal life, as it were, and the struggle both mentally and physically of moving forward only ostomates can understand.

I can only relate to it as I relate to a death… trying to deal with it in a daze while everyone around you is living their normal days.
It took me such a long time and this website to just get a grip, and I only had to return to my own home. Thankfully, you have found MAO - you can see there are so many in the same situation. It's like having a special secret friend that totally understands your feelings. Hugs to you, and hopefully, each day will become easier. jb

Welcome, Rhonda. We've all been there - you're venturing into your old world as a new person and it feels weird. No one could possibly understand what we go through unless they've gone through it. It's early for you, but it will get easier. Have a good defense, bring extra bags, rings, paper towels, etc., in a disposable bag to work. Keep track of your stoma size because you'll need to get bags with a different size hole as your stoma shrinks (although it should maintain its size after several weeks. Yours probably already has at 8 1/2 weeks). Leaks are rare, but they happen. If you feel wetness around your stoma that's cold or if your skin feels itchy, those could mean a leak. You'll get used to the early signs and be able to take care of it as quickly as possible. Bag extenders can make you feel more confident as they give you more time before you need to attend to a leak. Share your stuff here with us. We get it.

Hi Rhonda, I am glad you found this site too. Your fears are understandable, but you are in a safe place here. We are all here for you and want you to feel free to post your concerns. You will get more comfortable in time. I understand being concerned about leaking in front of your students. They would be more understanding than you think, though. Others you say don't know what you went and are going through physically and emotionally. Perhaps you could confide in some of them. They may prove you wrong. I don't think most people can completely understand, but I think you may be surprised as to the effort they will make to try. Hang in there. It hasn't been that long. Give yourself permission to wallow a little bit. Then get up and enjoy your life.

Hang in there, Rhonda. You're a valued member of our international clique, and we can all appreciate what you are going through. But it sounds as though you are righting the ship. Adapting is not always easy. This may sound counterintuitive, but I think it is a lot more difficult for you younger folk to adapt than it is for us older ones. There are so many different nuances when you are young. But the fear of developing a leak in public is universal. Having an ileostomy makes things a little more complicated. As eefyjig said, keep an eye out for those early signs of a leak and try to address them before they become a problem. As for all those other changes... Yeah, it's a lot. But over time, they become less of an issue as you become the "new you." Hell, I still sometimes struggle with clothing myself, especially when I have to go someplace where the expectations are somewhat formal. But it just takes some strategic shopping and understanding of the value of elastic. 😂

Daniel

Thank you, everyone. I appreciate your encouragement.

Hugs, Rhonda, we're here for you!

 

Linda

Hi. It will get easier over time. I've had mine almost 50 years. Let me know whatever questions you may have and if you want to PM too.

50 years! Wow. You've experienced it all.

Tip of the hat to ya...

Thank you everyone so much! 

I had a little breakthrough today: I can wear my old jeans, the waistband comes to 2 inches below my wafer! Praise Jesus! 
I actually started to cry; it made me so happy and relieved one of my stresses. 

Great news

That is so awesome! I made the switch to sweats for the first while until I had to leave the house in something more pants-like. In the end, I was the only one that knew and cared about it.

Be kind to yourself, it all takes time, so much time. :-)

Try joggers for pants, they have a tie at the waist and are kind of baggy around the zipper area, but no zipper. I love them. I can tie above my stoma and wafer, or tie loosely around the bag below the wafer. Just giving you the option. Some have zippers at the ankles and others don't. Good luck. Brands: Reebok, Hurley, and others, but look up joggers.

Thanks! My son wears those almost exclusively. Since I'm a teacher, I try to dress a bit more formally. But on the weekends, I will try a pair!

I found encouragement going to YouTube and seeing all of the young people who have dealt with an ostomy for years. They are inspiring. It's also a great source for problems and tips.

I'm only six weeks out with a high output ileostomy that developed a stoma fistula, so cutting my barrier to fit well has been a chore since it's not round or oval; preventing leaks is a chore; keeping food in my body long enough for nutrition is a chore. Some days are discouraging, but sites like this and YouTube have helped a lot. I try to look at the bright side; it could always be worse.

Any information gathering regarding this journey is helpful. Last night I watched a YouTube video of a young girl changing her appliance... it was painfully way too awkward and time-consuming for me to watch. Hopefully, she is new and will be able to streamline her procedures. I say this as my stoma/situation is almost identical to hers, and my change day, thankfully, is not nearly as cumbersome as she demonstrated. I never seem to stop looking for easier, speedier, and better equipment for this stoma-caring job. jb

By the way, I don't know if it was mentioned already and I'm too rushed to check, but give high panel maternity jeans a shot. They're snug enough to hold everything in but loose enough to leave room for your bag to expand. They work with any stoma location.

I wear Gloria Vanderbilt.

Rhonda, I feel everything you stated. I had emergency colon surgery on December 25th (yes, Christmas Day at 6:00 am). So, I am 6 and a half weeks post-surgery. I have had the same thoughts as you posted. My wife has been a great help; without her, I don't think I would have made it. I have one good thing: I retired in August of 2023. I did not have to go back to work like you did. Trying to wear nice work clothes is and would be very difficult. Thank you for being a teacher; that is a tough job to go back to after the surgery you have had. Glad to read that you did figure out how to wear some of your clothes. I have not worn anything but sweatpants since I came home from the hospital. Reading everyone's posts on this site helps me a bunch. It has helped me keep from thinking I was alone and crazy. There are so many new things to learn. Cutting the "appliance" so it fits around my stoma is one of the hardest things to do. My stoma is not round or oval; it is a very odd shape. I use a ring that I can mold to help ensure I do not have a leak.

Hang in there and keep getting better every day.

Thanks for your kind comments. I am feeling much better each week that goes by. My stoma has changed shape each week until about 2 weeks ago. This is the longest time it's been consistent. Mine is egg-shaped. I bought some acrylic craft sheets and had my husband cut me a template to help cut my bags. I switched to a convex bag and it has helped so much.
Take care and hang in there!

Hello, 

Check out barrier rings. I used to spend a lot of time cutting the wafer hole to precisely fit my oblong stoma. The problem is: your stoma will change shape and size during the day. My stoma would rub against the wafer hole, causing stinging and discomfort. It also put a red ring around the base of my stoma.

I have a colostomy and change the wafer every 7 days. I started using barrier rings. What a time saver. I cut a large wafer hole that has plenty of stoma clearance. It takes 5 minutes. Then I cut a 2-inch diameter barrier ring in half. Using gloves, I gently mold and stretch the ring halves so they will fit around my stoma. It will take some practice... rings stick to gloves. Once they are long and wide enough, I put the rings on around the stoma. The edge of the rings is right against the stoma, all the way around. Press lightly with fingers and the barrier rings will stay in place. Then I put on my wafer. So rings seal to the stoma, and the wafer seals to the rings. Works perfectly. It used to take me 2 hours to change the wafer... now, 15 minutes. And the wafer is really comfortable. I wear a Nu-Hope support belt all day. The rings help cushion the skin around the stoma from belt pressure damage.

Welcome to our little spot in the internet world. Ask questions... someone here will have an experienced answer.

Good luck.

Gloves? Yep, I did that too… then I would stress as, like you said, everything sticks to the gloves… gave them up 2 years ago - in stoma life we are presented with a whole lotta pooh - hence the constant hand washing - moms can relate it to baby care. After 3-1/2 years I am down to about 5 items for stoma change - spray adhesive remover, a few sheets of toilet paper, (old bag off) then naked shower… aaahhhh - that's my stoma singin'… then in a prone position I apply stoma powder, barrier wipe, barrier ring already secured to bag and done. Like you, I have learned ways in which to cut this change task from almost an hour to just under 15 minutes… for the newbies viewing this post it'll happen for you too! There is no right or wrong way - it'll just be your own way. jb