Struggling with Ostomy: Will I Ever Get Used to It?

Hi, I'm 6 weeks post-op and I hate it. I hate looking at it, changing bags, everything about it. Will I get used to it?

None of us are movie stars, yet we manage to get used to looking at our face in the mirror.  It's the same with the bag on your belly.  It becomes, like your face, your normal.  Hopefully, you got good counsel from a competent ostomy nurse re changing procedures etc.  You fall into a routine over time, you develop the method that works best for you, and one day it dawns upon you that you've become used to it.  As far as accepting it, well, you have no choice.  What's the point of beating your head against the wall?  Our lives were saved by this surgery, so it's something for which we are thankful.  Once you recognize how little it limits you, really, then you're off and running, so to speak.  

Hello there, like Henry said, he knows what he's talking about ..

Hi Justbren.bp! I think everyone comes to a point where taking care of your new normal is okay. Some are more okay than others. You have found the best place for encouragement and honesty in dealing with an ostomy of any kind. The people here share their feelings, fears, and tricks of the trade so generously that it helps everyone connect....and not feel so isolated. You will triumph over this! I felt the same way in the beginning as you do now. I felt like I had been attacked and butchered and left. I had no support anywhere....then I found this site. I never posted, just read and read and found peace with it. I think you are smart and brave to open up and ask....I tend to crawl to the back of the cave when wounded.... fortunately I took my tablet with me which gave me contact with a part of the world that understood what I was dealing with.....if you haven't actually experienced this, most people can't imagine what it's like...You can do this and will heal and prosper in every way...all the best to you! Celia1552

Hi Justbren.bp. It does get better. I struggled at first... I cried every time I had to change my pouch. Now it is just part of my 'new normal'. Stay strong.

Hi

I'm sorry for what you're going through. It can be so hard especially in the beginning. Your feelings are valid. I read you had an emergency surgery so you didn't know this was coming beforehand huh? Is there a long-term plan for your colostomy?

Do you have access to ostomy nurses? As others have said, they are so instrumental with this aspect of care.

I wouldn't look at my bag/touch it at first. I would turn my head when someone on the medical team was checking it. I was so determined not to look, and then one day they were messing with it and said something, and curiosity took over, and I didn't mean to. I was mad I had failed my resolve not to look, even if by accident on my part, but I looked, and it was a first step in the right direction. Then one day I'm standing there while the nurse aide is emptying my bag because I was like, "No, I can't do that." I burst into tears out of seemingly nowhere. The aide looked at me with wide eyes as I blubbered something about it being me and not him, and I wasn't crying because of him, but I just really hate it and wanted to go home. The poor guy didn't know what to do with me.

Time and practice do help. I went from it taking 2 hours at the worst to do an emergency bag change when there was a leak and the stoma was acting like a volcano to 5 minutes, maybe 10 if things were active and I had to wait for the skin to dry.

Give yourself/your body lots of grace as you're healing ‍

Jodie

Hi Justbren, I hope it helps a little to know that we've all been where you are. I did a lot of crying early on. I felt assaulted and bullied by my ulcerative colitis, invasive tests, and humiliating situation, frantically looking for bathrooms, having accidents, my friends and family not knowing what to say....and then my first surgery and bag. None of this is for the faint of heart and you're in good company here because we ALL understand and empathize with you. I can only encourage you to try to not define yourself by your bag. Give yourself time, cry when you need to, get it all out and then try to get out of your head, find your rhythm and get back to your life. You'll be giving advice to other newbies on here at some point and that's helpful to them and you. Hang in there.

Hi Justbren. I chose to have the bag. I had high grade muscle invasive bladder cancer. The options were chemo or bladder removal. I read so much about the chemo effects and ultimately bladder removal I went straight for get it the hell out. That was 2 months ago. So, my situation is probably different from yours, but I look at the bag as keeping me above the daisies. I got used to it almost immediately, but battle through issues like how to change it, how to sleep with it, how to go out with it, how to empty at a public restroom and yeah how to have sex with it. You can get past all of those. And you're still alive. I still have days that I can't believe I have this and wish I didn't. But they are fewer and further between. Try to stay positive, it really does help.

Everyone has given good advice. It takes time so give yourself grace to grieve your loss. You have started by finding this site. All are here to help you. Welcome.

Hi Justbren, I was in the same boat as you, had a perforated bowel, and needed emergency surgery. I knew about an hour before going into surgery that I would be coming out of it with a colostomy. Quite a shock to the system to say the least. I remember the first few days in the hospital like it was yesterday. I was in physical pain, but the emotional pain was worse. I didn't want to look at mine, and the idea of having to change it myself was repulsive to me. I remember the second day, the ostomy nurse came to see me, all smiles and encouragement, and I was so rude to her. She and I are good buddies now, by the way! I was reminded that this stoma had actually saved my life. My acceptance came quite quickly actually, and you may find this hard to believe, but I actually love my little stoma now, and am glad to now have a life without chronic discomfort and pain (from chronic constipation). It has not restricted me from doing anything I did previously. I have a supportive partner too, which is important. The friendship, knowledge, and support I've received from this wonderful group of people has also been a lifesaver. I'm glad you found us. Don't be a stranger. Ask anything. There are no stupid questions. It will get better.

Terry

Yes, if you yourself want to, it's all down to your mindset.

I remember long ago, the day after my surgery, sitting in a chair with one of those lovely clear bags they make you wear at first, looking at a stoma that at the time in my mind looked like an enormous pumpkin and yucky black and then green bile coming out, thinking yuck, what have I done, and at the same time thinking it's my life now. I have to get used to it and kept looking at my stoma and bag and learnt to live with it, then further on to love my stoma.

Hi Justbren!

I will tell you, you are not alone feeling this way. I had an ileostomy done in October and was totally overwhelmed about the idea of putting on these bags, and emptying them too. The thing that threw me the most, and I know this will sound silly, was the cutting of the skin barrier. Luckily for me, I discovered the stretchable one, that is easy for me to do! No cutting necessary! Once I discovered that product, my fears and worries disappeared! Now I change my entire appliance in under five minutes, and because of that, life is good! Hang in there and you will learn that this is your "new normal" and you will be fine!

I am curious about the 'stretchable' ones. Is it the Convatec moldable you are referring to? I've never tried them, but have wondered how well they work, and what kind of wear time you can get. I also have an ileostomy.

Terry

Hopefully you will start feeling more at peace with your situation. At first, I was exhausted, mad, and a little depressed, and this is the second ileostomy I have had. The first one was 18 years ago and temporary. Knowing this time was permanent was harder to accept, but I'm getting better at it every day. I'm around 5 months out and have noticed a big difference in how I feel for the better in the last 4-6 weeks. Everyone is different, but what you are feeling right now is not unusual.

Yeah, I'm just over 2 months from surgery. Things are returning to normal. We did our first concert and overnight stay. I survived and had fun.

So, give it time. You'll get used to this pink thing sticking out your belly and all that comes with it.

Hi Terry, I use the Convatec Mouldable, not for their stretchiness but mostly because the pre-cut hole is exactly the right size for my stoma. I do find that they turtleneck a lot. I get 5-6 days of wear time.

Thanks, Poopsie. Good to know! Is yours a colostomy or ileostomy?