Seeking Advice and Support After Emergency Surgery

Thank you all, my friends. You are great. The day after the leak, the bag broke. I panicked and called my Ruse, and the agency sent someone out within an hour. She changed everything, so far so good. I am so paranoid now. I just pray it doesn't happen when I'm not home. I also have pain in the lower left side where no incision or anything is. It must be from when they played around inside. My doctor said it's referred pain, but it's like someone is stabbing me. No pain at the incision site or stoma. Odd. I got free samples from Hollister, and they sent a little travel bag too. They were great. I hope to have my reversal in 3 months. I can't wait. Thanks again, everyone.

Another thought. I have only gone out to doctor appointments so far. I can't imagine how to wear clothes. I've looked online, but my bag seems so big I can't wear anything but dresses two sizes too big, and I still think the bag shows under. I also wear a light jacket over the dress to hide it. That's hard; I live in Florida, and it's so hot. How do you guys wear anything normal?

Referred pain is when you feel pain in a different place than is actually hurting. So the doctor is saying that the pain on your left side is actually coming from your surgical area.

It is very confusing because we naturally think the pain is coming from the place we feel it. But this is very common.

I had a lot of sharp, stabbing pain when I was recovering from surgery too.

Bag changing gets easier, and you'll learn to manage better. I had so many accidents when I was new that I found myself crying and unable to stop one day. I picked myself up and started problem-solving, asked my ostomy nurse some questions, and took charge. I never looked back. You'll get there.

G-Day Robjac2,

I hope all is okay now and you're feeling a lot better. With the way you dress, some of the ladies will help you, I hope. What make of bag are you using? Does it show when it's full? If so, you have to empty it more often. A lot of the time, we think people can see the bulge of the bag, but it's all in our minds. People are not looking for things like that, but we think they are and that they can see it. You know what? Live life to the full and don't worry about what others think; just get out and enjoy life. We all love you, so who gives a damn.

Regards, IGGIE

Hi! 👋

What kind of bag are you wearing? One piece, two piece??

I am unsure of all the one piece designs, but if you are wearing a two piece, there is an ostomy belt that attaches to the hard plastic part of the bag where there are belt tabs at the top. This helps keep the bag close to your body and also helps with leaks. Hollister sent me several after my surgery. Check your samples and see if you have one. If not, call them and request a few.

As far as dressing, a lot of ladies have suggested loose cotton dresses and skirts; maybe ones with an elastic waist would work for you? Shorts with elastic waists, loose-fitting lightweight pants? Sometimes the placement of your stoma dictates what will be comfortable for you. Google “clothes to wear with an ostomy for women.” There are a lot of videos you can watch to give you some good ideas.

Hang in there and let us know how you're doing 😊

My Ostomy Journey: Keyla | Hollister

Unless they changed in the last year (ish), Hollister doesn't have the belt tabs on any flat 1-piece bags, according to them when I asked. They have it on convex 1-piece bags and obviously the 2-piece bags.

That's what I thought, but I haven't looked lately.

I am wearing the Hollister 2-piece bag. I have the belt, but it doesn't seem to help with the bulge. Even when the bag is empty, I still see it through the dresses. I even bought dresses 2 sizes too big! I can't even imagine wearing any kind of pants, even stretch or yoga pants. Won't it crush the bag? I'm so afraid of a leak when I'm out. I've only been out to doctor appointments so far. I'm exactly 3 weeks from surgery today.

Get yourself a wrap or belt to hold your bag closer to your body and help support the bag as it fills. You could also look into using kid-sized bags if the smaller volume size isn't an issue. Personally, I go without a shirt a lot while out in the yard, or I wear a StealthBelt with no shirt at the lake; a guy needs to work on his tan lines, ya know. ☀️

Light pressure from yoga pants won't hurt anything and will help hold the bag flatter.

I'm guessing you are a relatively small person. Depending on stoma placement, try a snug camisole or tank top under the dress or support panties that go up to your waist.

Google ostomy clothing. Ostomy Secrets is one brand frequently mentioned.

Personally, I use a belt. I never have problems with the colostomy showing unless it's full. The urostomy is filling constantly, so it's more of a challenge. However, no one ever looks at me and notices.

Try an empire waist that is loose through the middle. Maybe a long, loose top over leggings?

I suspect it is the style of dress you are choosing.

I'm late to this thread, but I wanted to add some encouragement and two suggestions to your request. I'm six weeks out from my surgery. Your body has been through what is probably the most significant trauma it's experienced. I felt like I'd been sliced open and saddled with an ugly, noisy, messy baby on top of it. I was desperately depressed for the first few weeks. (The hygiene challenges alone...) You will begin to bounce back. But don't hesitate to ask for meds if you need them. I doubled my antidepressant. (Bupropion kicks in quickest.) My other suggestion is to check out Flax dresses. I bought three loose ones for the summer. They weren't cheap, but the quality is good, and they can go in the washer and dryer. They get very wrinkly, but that disguises things well. If you decide to get them, they run large. Stick with dark colors so the bag doesn't show through.

For information, the UOAA is fantastic. The New Ostomy Patient Guide is the best I've seen. Also, check out veganostomy.ca. I've watched his appliance change video over and over. Good luck!

Everyone on here is offering great advice and is very caring and supportive. Glad you found this place! I can't help with clothing choices, as I'm a man, so I can't imagine how hard it is for you to find something that works for you. You will get through this and be stronger on the other side, I promise. I was totally unprepared for my ileostomy; I had a total colectomy from toxic megacolon due to C. diff due to kidney cancer, so I was not prepared at all for an ileostomy, never having had any digestive problems before contracting C. diff. See an ostomy nurse if there's one near you; they have been great for me and helped me understand all the confusing products and how to use them. I did discover that Press'n'Seal works on the human body as well as to store food (who knew, now I do!). Also, there are waterless hair "washing" products out there. You can get them at drug stores or online. I used them at the hospital, and I never knew such a thing existed either! You can wash with your ostomy bag on, no problems; it's able to be wet. Likely, your no wet is about your wound healing, especially while you're on a wound vac (I had one while in the hospital and for a month post-discharge as well).

Allow yourself to cry, let those feelings go through you, and then (try to) let them go. All we can do is put one foot forward and take each step one at a time. Before you know it, you'll have climbed to the top of the hill and see a wonderful view and be grateful you got there to see it! You got this!

Hi there. It's a journey. I received my stoma on June 25, 2024. My reversal was on April 4, 10 weeks ago. In those 10 months, I never had a leakage. Never! Don't worry about it! I did, and it never happened. I spent so much time worrying the first 3 months; I finally realized there was nothing I could do about it anyway. You will get there too. I wore mostly pull-on pants with a high waist. And sometimes I wore a panty girdle. Good luck and remember YOU GOT THIS.