Coping After Colostomy: Seeking Support and Advice

Good morning everyone,

I am reaching out to you all to see if anyone has any similar feelings or advice for me.

Five months post-colostomy operation, and I am seriously struggling.

Struggling with the fact that life won't be the same, and I just have to get used to a new way of doing things.

Every morning I wake up, I cry. I don't want to start the day; I try to find the strength to keep going. I cannot stand every aspect of looking after my stoma. I lie there in despair.

How do I go forward from this?

I can't see a way forward. Everyone says it will get better; I can't see beyond my tears.

Can anyone help me? 🙏

It is a major change in your life. I received my colostomy when I was a very young woman. Every time I pulled down my pants, I felt I was in the middle of a nightmare. I hated changing my bag; it took forever.

But then I just started going out—to work and with friends. There were mishaps, but I made it through, got married, had a couple of kids, traveled, and worked. I was divorced after 21 years. Now I'm just dating, spending time with family and friends. My life has not been a picnic but has been filled with many wonderful surprises and some terrible memories.

Just start with baby steps. This site is a blessing to new and old ostomates. Lots of brave people with stories to tell.

Shake those bad feelings out of your head. I can do most things that I did before: travel, go out, garden, and shovel snow. Give yourself a little task each day. You can get through this. Take care.

Hello,

I have a sigmoid colostomy. I had it 25 months already. I'm a little guy, and my stoma sticks out noticeably... no way to hide it.

I'd say my first 7 months were the hardest. Once I decided against reversal surgery... I had to accept this new normal. Without the colostomy, I would have died. My wife would be a widow.

At 5 months, yes. You're going to struggle. Dealing with stoma equipment. Emptying the bag. Regaining your strength. Mentally recuperating from being hospitalized and undergoing surgery. It takes time.

There was a large window in my 6th-floor hospital room overlooking Newport Beach and Balboa Island. When I was able, I'd look out at the cars and people. Going places, riding bikes, enjoying the day. I wondered if I would ever be carefree and happy again.

My colostomy gave me my life back. And I am "back out there" enjoying life.

You're the same person you were before. It just takes time to get your smile and confidence back.

If time passes and you're still struggling, seek out counseling. We all need a little help sometimes.

Good luck.

Dare I reply? 😁 As the saying goes… one foot in front of the other. 🌞

My Ostomy Journey: April | Hollister

I totally feel your despair…I too felt like you…that was almost 5 years ago now. I could not even look at my stoma after surgery…my husband watched as the nurse showed us how to apply the necessary equipment. She said to my husband, “Oh look, she's so white she looks like she is going to pass out.” The whole experience was so traumatizing it took me a while to deal with it. This site was my sanctuary and my saving grace. Example: I used to wrap my stomach in Saran Wrap to shower…talk about a total waste of time and wrap! Then I read here, “Just go naked,” it will not hurt your stoma…it was a giant step forward for me to find this help…I found the medical help was over once I left the hospital and there were still so many unanswered questions - until MAO.
It took me a year to find MAO, so that first year was the hardest. There are many amazing people here who you'll find so very helpful. Amazingly, there are some with 2 ostomies - these folks are my special heroes!
You can live but one day at a time….your body takes time to heal. A good mental attitude healing is up to you…I find humor and music (in that order) helps. Best wishes for a speedy recovery and the return of a normal life for you. Hugs, jb

🤣

I'm not sure what to say, Pamela.

It just gets better; I do all the things I did before, just with a few adjustments.

We've all got places to go, things to do, and people who need us. I just get on with it; you'll get there too.

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We're all here for you. Don't let having a pouch define who you are. Baby steps will get you to the person you are.

Hi Pamela, 40 years ago, before the internet and all these good folks on here, I got my ileostomy that I knew I was getting as it was the last resort after battling UC/Crohn's disease. I was shocked the first time I looked at my stoma and couldn't believe that was part of my innards but sticking out of me. It was a steep learning curve, and I went through all the emotions major surgery brings on: why me, or anger that I was stuck with this. But slowly, after figuring out how to care for it and having no leaks, I started to get back to my old self and start to live my life.

Surgery is a major shock to the system. You are fighting a physical battle at the same time as you have a mental battle. It can be overwhelming.

Consider getting a little professional help. Look for someone familiar with your issues.

For self-help, look into grief resources. You are grieving the loss of your body as you knew it. And it will never be the same. Give yourself space to be sad, then find your anger... you are definitely angry at life for what has happened. Be angry. With anger comes the energy to move on, stronger and better than you were before. Different is good. One day you'll wake up and the anger will be gone, leaving peace behind.

Absolutely agree with you. Motorcycles saved me. I knew if I could ride again, all would be well in the universe, and it was. Cheers!

Don't despair. It took me about a year to accept my stoma as a way of life after my ileostomy. I felt much like you do. I didn't want to get out of bed for a long time either. It was a shock to me each time I would look down and see this appliance hanging off of me. I was frustrated because it was such a nuisance to maintain. It changed the clothes I wore, the foods I ate, and the confidence I had in my body.

But gradually I started to be able to forget about it for short periods of time. Like when I was gardening or laughing with friends over a glass of wine or searching for dogs to adopt. I slowly started to enjoy the little things again... even standing in the kitchen making homemade soups and cooking for my husband.

In a way, the stoma changed my life for the better because it forced me to appreciate and savor those moments that I previously just rushed through. It also made me emotionally stronger for my husband, who is also facing some serious health issues right now. It has taught me to plan ahead, yes, but also to take each day as it comes. Plans change, life changes, health can sometimes be a fleeting thing.

I received a lot of emotional support from this amazing group, and I also reached out locally to my hospital that provided wonderful at-home support, like stoma nurses, physical therapists, dieticians, and so on. Don't be afraid to contact your surgeon's office to let them know that you're struggling to adjust to this 'new normal' right now and need some help. That's what they're there for.

You don't have to do this alone.

M
xo

Time, that's what you need. Talk, talk, talk, and then talk some more, either here or to family and friends, or both. Don't bottle it all up inside about how you're feeling; talking is the best therapy. Arrange to go on short trips, even just for the day, to give yourself something to look forward to and make new memories. Just take one small step at a time, at your own pace, and speak to a doctor if you haven't already done so about how you're feeling.

Pamela, everyone here has been there and got over it.

You are at ground zero, and it will take some time, but it will get better. Have I lied to you? 😁 before?

We are not bull pooping you here.

You need to dry those soak-filled eyes and move on.

Listen to fellow colostomy members. They are living their dreams.

As an ileo, we have it a bit more difficult, but we still move on.

You can irrigate. We can't.

You have that handsome man beside you.

Some of us don't have anybody.

You live in Spain! Go do Spain.

It's a bit early for you to count blessings, but they are there and coming soon.

Depression may need professional services if it's really that bad. But again, like everything said above from previous members, it does get better—day by day.

I also believe what Beach Boy said nails it.

Everyone else is nailing it too, but BB I felt relates to your situation.

Remember, we are the few... yet proud Stomamarines.

We may have it rough sometimes, but we kick ass as comeback troopers.

Blessings.

You must remember one very important thing, my dear: you still have life. You must persevere, slow but sure. I promise you things will get better with time. Bless you.

Everyone has pretty much said it already... it's a shock to your system. I had no idea or preparation for getting my ilie. I went into emergency surgery and woke up with one... and unfortunately had no real knowledge of how to take care of it properly until 6 months later when I begged my doctor to see if it could be reversed and why I wanted it to be done. Five years later, here I am, unfortunately no reversal in the cards for me, but honestly, you do learn after a while it's no big deal. It becomes your normal and you don't really think about it anymore. Sure, you may have leaks and change products here and there, but that's what we're here for, to help if we can, and eventually it's just like you've always had it. 🫂

Poor baby! That's what I tell myself. I'm at 4 months. I was horrified at the transparent poop bag and the draining. Then I changed (right out of the hospital) to the one-piece Coloplast Sensuro Mio. I just poop once a day, then change the entire bag out. Takes me less than 5 minutes, then I'm good for the day. I'm even starting to forget about it. The fatigue is still a problem, but getting better. I could only do one chore, then sit for a minute, then move on. Could be because I'm old. But just one little chore at a time. Really tiny chore, like putting on shoes. Then I was able to do multiple tasks. Now I've booked a cruise, with a few adaptations, like choosing nonstop flights and not expecting to do any active tours. I leave Saturday, and I'm going solo so I don't have to deal with anyone. Find something, anything to make you feel like living again. My first outing was to a local park with my friend where I could sit and birdwatch, just for 30 minutes. Tiny baby steps, just try it. Hugs!

How amazing all your comments are.

They have truly inspired me.

And I do believe in every one of what you are saying.

I am going to push forward every day and take on board all your suggestions.

I cannot thank you all enough.

Hugs. X

I just had to tell you, you are an inspiration to me. Thank you.

I used to go on cruises four times a year, and I am longing to go on one again, so you have inspired me in this.

You are a very strong, determined lady, and I need to be like you. I used to be so outgoing and confident. I am lost at the moment.

I wanted to ask about your diet. Do you eat most things now? I used to be a wine drinker, but I haven't touched it since my operation. Do you drink 🍷, and are you okay with it? I have lost a lot of weight.

Also, do you ever leave your bag off for a few hours to let the skin around the stoma breathe?

Sorry for many questions.

Hugs x

I've been on 2 cruises, no problem. Recently went on a 5-hour plane flight, Los Angeles to Miami, Florida... no problem. I just booked another cruise for Feb. 2026, and will fly from LA to Orlando, Florida.

On both cruises I was on, I drank a couple of glasses of wine, no problem.

For the flights, I eat only a small meal the day before and drink plenty of water. At the airport, I eat nothing... but continue sipping water.

I've also been on several week-long road trips through the desert, from LA to Las Vegas, in the car. And a couple of 2-week-long road trips to Northern California... Had no problems. I use the Hollister 2-piece system. It's easy to burp a gassy bag... or change a bag that's half full. It takes me less than a minute to remove a bag and snap on a new one. I put the soiled bag in the dark-colored disposal bag that comes with each box of bags from Hollister. Just tie the disposal bag with a knot at the top. I always have plastic shopping bags with me and put the used ostomy bags in them if I'm somewhere where I can't dispose of them properly, like the desert.

For plane flights, I board early as a disabled person. It gives me extra time to put my carry-on luggage in the overhead bin. I don't pack too much in it, so it's not too heavy. I also have a small backpack that I put under the seat in front of me. It contains a couple of bags, a precut wafer, adhesive remover wipes, nitrile gloves, a moldable barrier ring, a small bottle of Hollister M9 deodorizer drops, 2 disposal bags, a couple of plastic shopping bags, a small handheld mirror, and a spare support belt. Everything I need... just in case. Also, a protein bar for a midflight snack. While flying, I only drink water.

I'm planning a 2-week trip to Norway. An expedition cruise around Spitsbergen for polar bear viewing.

For all my cruise trips... I buy very good travel insurance. I purchase options like evacuation by medical jet (even if non-emergency) to the country or state of my choice. And I make sure to buy the insurance right after I book travel... so pre-existing conditions are covered. I researched travel insurance companies and use only the highest-rated one. I used to save money by going with cheaper travel insurance companies... nothing but trouble. They fought me even on the smallest claim.

So, recover. And plan a cruise. The only limits are the ones you put on yourself.

Wow!!!

Thank you.

That was so informative and provided some great advice.

I will keep all this information for my first flight and cruise after my operation.

I must tell you, you are so helpful and straightforward; I love it.

Thanks again.

Yup... give the beach boy a 🔨 hammer... he will nail it! 😄

Behave

You are kidding, right? jb

I was just like you a couple of months ago. I wasn't even sure I would wake up the next morning. I couldn't even go to the grocery store or cook more than tea. But every day, a little better. My stoma, aka Little Mouse House, is surprisingly easy to take care of. What is bothering you about yours? I shower with it off, and afterwards, if I have nothing planned, I may lay in bed and read with it airing out. I haven't had any skin problems. I was a big wine drinker, but it just doesn't taste the same. I may have half a glass a couple of times a week and a cocktail here and there. I also lost 15 lbs. I can eat almost anything, except a few things like beans or sodas, as I get gas pains. I just had licorice, champagne, BBQ, potato salad, and ice cream for dinner! I drink peppermint tea if I get pains. Don't let your mind stop you from living. Book the cruise and go!!!! Pick one close to your house, and maybe just a few days. Baby steps!!!

I want to go see polar bears! That's on my bucket list!

Yes. Excellent bucket list destination.

Many years ago, I went to Churchill, Canada. We went on an expedition cruise near the North Pole. We visited the Polar Bear jail at Churchill... that contained some unhappy "inmates." They are eventually relocated into the wild. The cruise was amazing. Lots of beluga and narwhal whales, walrus... and a gazillion birds. We visited many Inuit communities. Mrs. B sampled whale blubber; I opted to watch her. 😉 I'll post some of my pictures from that adventure.

I detest every aspect of it: poo, changing bags, cleaning, changing the ring; it's all such a chore. If the poo doesn't drop to the bottom of the bag, it bothers me. Keeping it clean bothers me. I know I have major depression; I am having panic attacks over nothing, palpitations, and feeling sick. I just hate my life with it, and I have a wonderful husband and live in a lovely place. I just don't know how to get out of this hell I feel I am in.

Change as quickly as possible. Try using a one-piece bag if possible. It's so easy to take off and put on. Change it daily if possible. Make things as easy and pleasant as possible. Think of a nice reward for yourself after changing. Listen to music you enjoy while you change.

There are some really cute covers for your bag that you can make or buy on the internet.