Adjusting to Life with a Colostomy Bag: Seeking Advice

Replies
18
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302
eab3691
Jun 29, 2024 10:40 pm

I had emergency surgery in May (bad diverticulitis) and now have a colostomy bag. I'm adjusting to it, but it's hard. My main issue is changing my bag out myself. My wife has been changing my bag (she used to work with patients in the healthcare field) because I get sick looking at my stoma. I get queasy and just sick looking at it.

Is there anything I can do to get over looking at it so I can change my bag myself? I need to do it myself. Thankfully, I'll get it reversed in 6 months.

Beachboy
Jun 29, 2024 11:13 pm

Hello,

Get on the internet. Start reading about stomas. Look at pictures of stomas. Then, start peeking at your stoma through the bag. Then, start changing the wafer yourself. Once you become familiar with your little piece of intestine, it won't be so bad.

It's just a little, red, piece of muscular tube. A poop-shooting tube. 😁 But without it, where would you be? Still sick as hell? Six feet under? Given the options, I'd say having a colostomy isn't so bad.

Getting reversal surgery is a maybe. Start researching the procedure. In a couple of months, consult with your surgeon about your unique condition and possible complications. I thought mine was temporary and reversal was a piece of cake. For many reasons... nope. Everyone is different. Find out where you stand.

And that brown stuff in your bag... just digested food. One thing about being an ostomate... gotta get used to crap, poop, shit, scat, and everyone's favorite... pancaking.

Hopefully, in 6 months you'll be reversed and back to normal.

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eab3691
Jun 29, 2024 11:31 pm
Reply to Beachboy

The doctor had told me after surgery, while I was still in the hospital, that in 6 months, he'd reverse it. I talked with my wife and she said yes, if there are no complications. I never thought of that... so for the time being, I've got to make the best of the situation I'm in. I'll know more in 3 weeks when I visit the doctor again for a checkup.

AlexT
Jun 30, 2024 12:26 am

Sometimes in life you just have to put your big boy pants on and do things you don't like to do.

CrappyColon
Jun 30, 2024 3:58 am

What don't you like about it? I was more bothered by the contents in the bag. I remember asking my surgeon if she had any idea what it was like to eat green beans and then watch them come out of your abdomen... don't worry, my surgeon loves me. After I turned into a crying mess for one nurse aide, telling him how much I hated it when he was emptying the bag for me, I talked to my surgeon's team about trying hypnotherapy to help desensitize me to the process. The next day I had a different nurse aide, but we didn't do anything medical. First, she tried reasoning with me. She said, "You want to go home to your kids, right?" Duh. "Gotta empty your bag." Nope. I told her my husband would do it for me. She said, "You're going to make your husband come home from work to empty it for you?" Yep. She asked how far the commute was. I told her it was doable. She gave me a look—she'd raised daughters. Then she started telling me about this house she'd inherited and a peach tree on the property, and her grandma's banana pudding recipe, and we agreed the Jell-O brand banana pudding is a joke compared to a good Southern recipe. She showed me these little sprays she gets at Bath & Body Works that helped with the smell and told me to wait until they go on sale. She stayed with me for half an hour, just talking about normal life things... and I told her I'd try to do it myself if she stayed with me and would clean up if I threw up 😆. It was a big step in the right direction. But it was my kids... my son was 12, my daughter 11. My son asked to see my stoma soon after arriving at the hospital, and I wasn't sure he was ready... maybe I wasn't, so I said, "Walk some laps with me." He kept asking, so I said okay. My daughter didn't want to look, but when she heard my son say, "Hey, it's not bad at all," she looked and did okay. She got baptized into stoma world the first time there wasn't anyone else at home, which was also when I had my first emergency leak. In the moment, I told her, "I know this isn't fair what I'm about to ask of you, and I'm about to start having you run to get different things I need, but you're it, girl, and I need your help." She came through for her mama. My son thinks it's so cool that he can tell people that he's seen a small intestine outside the body. It's very kind your wife is willing and able to do the changes for you, but if my daughter can handle being around a spewing stoma, you'll be able to look at yours and change your bag before a reversal. One small trick if you feel inclined to try, stick an ice cube in your mouth right before you look at it. The cold should distract your brain from jumping to a nauseous feeling.

 
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Beachboy
Jun 30, 2024 4:05 am
Reply to eab3691

My surgeon told me the same thing. I'm 18 months post-op... still got my little buddy: the super duper, hardcore pooper... Mr. Stoma.

Joking aside, I had to make peace with it.

Ben38
Jun 30, 2024 5:21 am

Keep making yourself look at your stoma. Your wife is killing you with love and kindness by changing it for you. I remember sitting in a chair the day after surgery in the hospital, seeing my stoma in those lovely clear bags for the first time, with the stoma looking like a monster and hating the sight of it. But I knew I had to get used to it, so I kept looking at it. Not luckily, but having a wound infection and the wound around my stoma opening up, I was lucky if I had a bag stay on for more than 2 hours. So, I had to change my bag a lot in the first few months. I think that helped a lot in accepting it.

w30bob
Jun 30, 2024 8:34 am

Hi Eab,

I felt the same way when I came home from the hospital. While there, I didn't look at it while the nurse changed the barrier. I mean, I looked, but didn't like what I saw. But like every phobia, fear, or uncomfortable thing... when the time comes and there's no one to help you but yourself... you do what you have to. I always hated needles. But when I had to inject myself with Methotrexate as part of my treatment for Crohn's, I thought I'd never be able to do that. But once home alone with only two options... do it or let the disease win... I winced a bit and did it. And after the first time, it was no problem. The best thing your wife could do for you would be to refuse to change it for you. Sometimes tough love is the only way. Once you get to that point, you'll spend a few minutes studying it, touching it, etc. And you'll find it's not as bad as you thought. Whenever you face something that's inevitable... like having to deal with your stoma yourself... I find it's always best to just bite the bullet early and get it over with. Otherwise, you stress and agonize over something that still needs to be addressed. So you're beating yourself up for nothing. You're going to end up doing it yourself anyway, so why wait? Just do it the first time BEFORE you eat breakfast!

;O)

AlexT
Jun 30, 2024 8:58 am

The best thing I had was a nurse who made me do it. Then, I came home and my visiting nurse made me do it. Sometimes tough love is the best thing.

IGGIE
Jun 30, 2024 9:02 am

Bite the bullet, mate. What would you do if you didn't have a wife who's tougher than you? Regards, IGGIE

CrappyColon
Jun 30, 2024 12:38 pm
Reply to IGGIE

Iggie, aren't most wives? 😉 I wasn't there obviously, but I think God looked at Adam and said, "I need to make a tougher model that can withstand childbirth," and thus came Eve. 😁

Morning glory
Jun 30, 2024 4:58 pm

You will get used to changing your bag. You need to do it for yourself and not expect your wife to do the changes, even if she has experience. I am glad you have the opportunity for a reversal in the future.

godisgreatty12345
Jun 30, 2024 5:44 pm
Reply to eab3691

Sometimes, all you have to do is be smart enough and get it done by yourself, so you don't need to beat yourself up for nothing. You're going to end up doing it yourself anyway, so why wait? Just do it first thing in the morning! Are you on Facebook so I can chat with you, or you can search for me, Magret Carson?

TerryLT
Jun 30, 2024 9:11 pm

I remember feeling repulsed by my stoma at the very beginning. I didn't want to look at it or even think about changing my own appliance. The nurses at the hospital encouraged me to change my own, with one of them there for help if needed, within a day or so. It didn't take long for me to get used to it. Maybe it's because I know my stoma saved my life, literally, that I have come to a place of actually loving it. I don't mind looking at it at all. It is a part of me and it's made my life so much better.

You are very lucky to have such a supportive partner, but it's a lot to expect her to do this for you when you are perfectly capable of doing it yourself. Life is full of challenges. You can do this if you are motivated.

Terry

Kimmy050263
Jun 30, 2024 10:41 pm

It was hard for me, but I got to kind of like Ms. Stoma. She was very pretty! The first time I had to change the bag by myself was quite a challenge, but I managed. I had watched my boyfriend change it enough times. I wasn't successful the first time; I had to do it again to get it just right. I learned the key is to be patient, do not rush it, make sure your body is in the proper position, and have all supplies at the ready. My Stoma liked to erupt when I was changing, so I kept plenty of gauze at my side. I would wait until she quieted down before I proceeded. You know, sometimes I used it as a time to relax and let my belly breathe.

eab3691
Jul 01, 2024 12:45 am

Loved every comment. I will start changing my bag myself and looking at my stoma more. Thanks for the advice and encouragement, y'all. 🙂

luvram13
Jul 01, 2024 4:25 pm

Be strong, it will be okay. Funny, for me I have no issue looking at my stoma, but I do not find it comfortable looking at others. Touch it, clean it. It's okay. Kind of cool actually, especially when it's working its magic. Moving and stretching, so wild.

Hasapoopbag
Jul 05, 2024 6:57 pm
Reply to eab3691

Your story is mine exactly… emergency colostomy because of diverticulitis on May 21. I am not so lucky as you since I live alone and must deal with my bag myself.

Luckily for me, I've dealt with poop my whole life… cleaning the cat box, scooping the dog's yard, washing out the kennels, mucking the horse stalls, cleaning the rabbit hutch and chicken coop, changing the baby's diaper, etc. No issue with poop until I woke up covered in it because I didn't know how to change my bag so it wouldn't leak. Again, lucky for me… I'm kind of crafty and after a lot of web surfing, I learned how to make that ring and bag work. You will too if you have to do it yourself.

Impress your wife by showing her you can crush this… it's only six months out of our lives… after they put us back together, we will be stronger for this experience. Love your new poop chute… it saved your life.

IGGIE
Jul 10, 2024 1:25 pm
Reply to eab3691

Y'all come back now, you hear. IGGIE