Newbie

Howdy. This Weds will be two wks w my new companion Pablo. I have stage iv rectal cancer and radiation did a lot of damage. The tumor was size of lemon and invaded both internal and external sphincters so I knew if surgery was needed I’d have permanent colostomy. I was diagnosed last Aug and researched the whole colostomy thing so I think that’s why I didn’t cry when they told me I had to have it. But I’m struggling w day to day living with it. The fear of leak or blow out. I’m really paranoid about stinking and I don’t realize it but others do. How do you adapt to the new lifestyle? I only had three very quick ‘lessons’ on how to take care, change etc my colostomy before they sent me home. So I’m struggling with taking care of it. Advice appreciated. Thank you

Are you having leaks? If so where.

If you aren't leaking then its an adjustment problem. Adjustment problems are very common. Slowly increase your activity level and getting out of the house. The more you do the easier it will become

Hi,

Mine was rectal cancer, too. Besides the tumor, it also pushed outwards as anal tumors. Everything from my stoma going downwards was removed. I did things out of order because I wanted to try debulking it with high dose vitamin C but that didn't work. Things actually became worse. My tumor was 5 cm long but I don't know the width. It could have been significant though because it was getting difficult to pass stool and it became very painful. I didn't know that tumors have a life of their own. It caused a series of other serious issues before it was removed. I did chemo, then surgery, then radiation get any cells that might have still been present. Because they also had me on Xeloda during the treatments, the radiologist was able to reduce the amount of radiation I received. Because I had no rectum being radiated, I was told that I wouldn't have some of the complications that result from it being in place.

My bags always stay sealed and attached. I ran into an issue when I decided to try a cream film barrier but it may have been because I didn't apply it properly. I generally only use Cavilon liquid on a cotton ball.

What I do is likely very unorthodox but when changing bags, I always wipe down the area with a drop of Dawn in a cup of water. That seems to strip off any oil. I apply the Cavilon from where the very edge off the wafer would sit and work my way in toward the stoma. Cavilon liquid only takes about 15 seconds to dry. I then put a 3/4" wide ring of SkinTac adhesive around the stoma. I also apply the same width of adhesive at the opening of the wafer. I let them dry for a few minutes then apply the bag. Things stay well adhered even when I rinse out the bag multiple times a day. For the rinse, I use a splash of Listerine or a generic in a Venti size plastic cup. Instead of just masking any odors, it pretty much clears it away. In a YouTube video, a fellow ostomate put a TicTac in the bottom of her bag to keep it fresh. I haven't tried that but I plan to.

Welcome from Oz 🇦🇺

Don't try to rush everything, sounds like you're doing fine for 2 weeks in. Track down your stoma nurse, they are there for your benefit. Everyone has been through what you are feeling, you will get the hang of it everyone does.

The stoma nurse (WOCN) was most helpful for getting the right products and along with this group things got easier sooner than expected! Welcome to the group!🌻

Airport Security Tips Living with an Ostomy with April | Hollister

So you have the fear of leaking and the fear of stinking but no issues? That feeling will go away as you heal and get more comfortable with it. The faster you don’t have your stoma the center of your attention, the better. Find something to occupy your time and more importantly your mind.

Welcome…

and, you have found your STOMA LIFE SANCTUARY !

Answers here are plentiful by folks who have “been there, done that!”. So many fears, so much recovery time …my main fears even 5 years later, due to my worrisome personality, can be summed up as follows:

Bag leakage
Skin rashes
Bag filling up while away from home and A NON FLUSHING TOILET

So many other fears were eliminated with my participation on this site so my advice is stay connected and:

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jb

Welcome to the site. We’re here for you. You’re feelings about leakage and odors are completely normal this early on. Has anyone mentioned that they can smell you? Adapting to living with an ostomy takes time and patience, and is different for everyone. Stick with us and ask anything you want.

Hi from the North of England 👋🏻

I don't have the same as you, I have an ileostomy.. but the fears are all the same.. mine was in Feb so I'm still fairly new to this. I still get the odd fear of, "can I smell something?"
But it goes away. The products available are great. You should talk to your stoma care nurse, they will be able to give you advice on what products are best for you etc.

I've only been on the forum here a very short time and I have had such a warm welcome and have been given great advice on different worries/problems etc..

Keep sharing, the more we know the more we can help.

Be safe and well

Tony

Welcome! The following YouTube channels are very informative to watch if you have time: Chris Talks, LetstalkIBD, and Vegan Ostomy. You can also see if the manufacturer of the equipment you're using has videos on YouTube.

Hi and welcome to the site, long time ostomate here, after a couple months look into irrigation you may not have to wear a bag.

Thank you for all the warm welcomes and advice. Where I am staying and where I live doesn’t really have access to ostomy nurses. Right now I’m staying with family until the incision on my leg is healed and I can remove the drain tube. I had the surgery 4.5 hrs away from where I am staying. The surgery was done robotically and then plastics finished it up. I am having issues with leakage around wafer. It’s like the skin is wrinkled so the area begins to leak. Ugh!! There is just so much to learn and adjust to.