Colosmy bag

I'm new to this, just have had a bag for a few weeks. I'm really scared and nervous about this.

I really don't have anyone to talk to about this.

My husband helps me with things, but we don't talk about my fears. He just says it'll be alright.

Can anyone help me?

Hello,

What are your fears? What type of ostomy do you have? Why did you get an ostomy?

It takes time to heal, time to get used to an ostomy. It took me about 6 months to figure out the ostomy equipment that worked best. Everyone is different. What works for me might not work well for you. All ostomy supply manufacturers offer free samples. Look up ostomy supplies on the internet. You'll see companies like Hollister, Coloplast. Call them all. They have ostomy nurses on staff to help you.

It is daunting at first. Ask questions on this website. Any question. Nothing is too gross or trivial. Worldwide. Friendly, experienced folks will help. We have been there, done that.

I'm 19 months post-op with a permanent colostomy.

We’ve all got poop in places there shouldn’t be poop, there’s nothing to fear. Well, except snakes. 😬🫣

You're in the right place now to talk; talking is the best therapy. None of us are experts in here, but there's always someone to listen to you and suggest advice when we can.

Yep.  At the beginning.... got it all over fingers, Mr Penis, my pants, underwear.  I hated the first couple of stoma months.

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Hello holtgrim62.
Thanks for your post. I'm not sure if we can help, but we'd sure enough like to try.
Best wishes

Bill

You have come to the right site and welcome to the place that will be a great help to get you through this new journey of yours! Ask away and you shall receive answers to your questions. The greatest help is mental relief, as only other ostomates totally understand all of your fears. To know there are others - amazingly worldwide - that share your fears and understand is more healing than anything. Spouses, mates, friends, and all those who love you but are without an ostomy can never totally understand what goes through your mind and, quite frankly, cannot discuss the daily issues of "taking care of business" only you know - the folks here do understand, can relate, and are willing to discuss and share similar situations. jb

Welcome to the group. We are all here to help in any way we can. It is very scary at first, but you will overcome your fears as you gain more knowledge. Feel free to ask questions. Someone will share their experience and advice on what works for them. Educate yourself by going online. YouTube has so many channels. Try finding an ostomy support group nearby.

Hi and welcome. Education is key on this new journey of yours. I suggest you check out UOAA, United Ostomy Association of America. It's our national organization. Also, Ostomy101.com. You will learn about foods, blockages, skin care, clothing, ostomy products, travel, activities, and a whole host of other tricks of the trade. You might also want to check out a local support group near you. Just remember, you are not alone on this new journey of yours. Wearing a pouch does not define who you are. There are solutions. We're here for you. Best of luck.

Hi Holtgrim62, welcome to the site! Lots of good folks here have been through pretty much everything about ostomies, so ask any question you might have or share a joke. We all could use a laugh now and then.

Hi Holtgrim62!

I’m also new and have only had mine a few weeks as well. I have a colostomy after a bowel perforation and the removal of 26cm of my left-side colon. I had a Hartmann’s procedure and it is expected to be reversed. 

My husband also helps me with things, and you are right - they don’t know what to say - but being there for you and being supportive is important. My husband helped with my first couple of bag changes, although I do it myself now. 

What are your fears? Maybe we can help. My biggest fear is leaking or smelling in public. I already had an embarrassing situation and it was fine - I was at church last Sunday, in Bible study, nice quiet moment - my stoma decided to fart twice. Small room. Nice and loud.  I survived :D

It is pretty terrifying for the first few weeks / months. Plus I think the impact of such a major surgery can take its toll on our nervous system, meaning we’re not as robust as we might have been. A major surgery is big enough, but we also come out with a bag attached to us, and a whole new scary life ahead. It’s really normal to be fearful and it’s important you don’t push the fears down. It’s ok for them to be there. 
I would second what everyone said about sharing your specific fears with the group and I’m sure you will receive many helpful replies. 

Do you have a good ostomy nurse who visits you twice a week? LVNs or RNs don't have the skills and don't know how to troubleshoot. One great ostomy nurse came twice a week for 6 months and finally, we found the best pouching system for me. But most of the nurses helped me with my questions. I had to have them off and on for a year and a half. All my bags were leaking, especially at night. The beginning is hard, of course! Talk to your surgeon about getting home health care and about your fears. Your insurance should cover home health care. Try to get out and walk to clear your head, though Texas must be hot! I also do guided meditation for calmness. Please ask any specific questions!

I don't feel like myself anymore.

My bag is only temporary to be reversed in about 5 months, but I'm still feeling so alone.

I really don't have anyone to talk to.

People I thought were friends I found out aren't.

Would you mind if I talked to you once in a while?

Not just home health care and only 10 visits. It's all my insurance will pay for.

My husband changed my bag for m's.

I'm worried about leaking in public.

Where do I change it?

I'm afraid it'll become infected.

I don't feel like myself anymore.

Mine is going to be reversed in about 5 months.

I'm just so worried.

Im just so scared and afraid.

I don't know how to feel normal again

I don't know how to be normal again.

I'm afraid something will go wrong.

Mine also is supposed to be reversed in about 5 months.

It seems like forever, especially around the holidays.

What do I do if I start to leak in the middle of Walmart? There's no place to change the bag there?

Yes! I’d be happy to talk to you!

I felt the same way probably last week, I think it’s part of the process. 

My sister said some very uncharitable things about ostomies before I got mine, I think she felt bad remembering what she said once I got mine. She’s been very kind and understanding since. 

I haven’t had a leak since I got mine, mine in the hospital started to leak once, but I was in the ICU and the nurse handled it. I’m not particularly worried about leaks, but what happens happens.

I use a drainable bag, I change it in the shower every 3 days - in my bathroom. I straddle the toilet backwards in my home to empty, but in public toilets I sit regularly (the split at the front of the seat gives me room). I have not found the need to change bags between flange changes. 

Are you not using drainable bags? You can drain it in the walmart bathroom easily, you really just need the bag and the TP - I do carry a peri bottle in my purse, and every time I’ve changed it I just fill it in the sink. Plenty of women have seen/used peri bottles since they use them post labor and what not. You don’t owe people an explanation.  

You can get a ostomy cover that is waterproof/resistant that would help contain leaks if you are really worried, but again - I’ve been using this setup in the hospital and at home and I’ve never had a major leak. I had a minor leak (around the flange, didn’t “go” anywhere) in the ICU, but that was an odd situation. 

Fear of the unknown.

Fear something will go wrong.

I think I am going with Convert, I think that's how you spell it. I talked to the people who work there and they seem nice.

I have home health but just until October.

The nurse at my doctor's office is really nice, but I don't have any ostomy nurse.

I had two major surgeries, one to remove a 16 lb mass, the other to remove 8 inches of dead intestine.

They are going to reverse it in 5 months.

If you have any advice, I would appreciate it.

Thank you

My sister just makes nasty remarks about using one.

People who I thought were friends, I guess aren't.

I don't hear from them now.

My husband helps; he changes my bag and helps me shower, but he doesn't talk about it or how I feel.

I have no one.

I hope I can find people here to talk to.

Can I talk with you?

My sister laughs at the whole thing.

I seldom hear from her now.

Or any of my so-called friends.

My niece is kind enough to text with kind words.

I don't know what a flange is.

I haven't had any major leaks, just two small ones in the hospital and two at home.

What is the worst that could happen though? I don't know you, or your life experience. I can tell you that at one point in my life, I was wearing an infant, with a 2 and 4 year old in one of those Target buggies with the two seats in the front. Can you picture it?

Anyway, we were trying to check out and my (potty training) 2-year-old said she had to pee. Tried to finish the checkout. My child proceeded to pee down and out of the Target cart, in the packed self-checkout, with two employees standing there watching. Mortified. But I digress, what happened? The employees helped me get her and my son out, assured me it would be fine, and sent me on my way. I have never been more grateful for Target cashiers in my entire life.

My point being, embarrassing accidents happen. It is rough, but you will survive.

I have home health, but I have been declining their visits, as I've gotten a handle on this and they don't really do much for me. I do have a copay each time.

I had two surgeries, one to clean out the infectious goo and infection, and remove 25 cm of bowel (~10 in?), and they left my abdomen open for a week after that (I looked once during the dressing change, I do regret looking - I should have never looked) and the second surgery to check and close me up.

I would do things to mitigate if you have an issue. I bought a waterproof mattress cover, just in case. I am going to put a change of clothes, change of bag and flange with some wipes (for my body, not around my stoma) in an “emergency” bag in the car, just in case. In the worst-case scenario, you'd have something to clean up and change into.

I'm very sad to hear your sister and friends have not been supportive. I have two sisters, the one who had said less than kind things worked in the ER for years and most of the people she saw with ostomies were not taking good care of themselves and it was unpleasant on the CNA end of things. She'd never encountered anyone who took good care of their ostomies and were in good health, once I had mine, she said it was not what she had expected it to be like and she admitted she did not know what it was really like.

I haven't told everyone, but I haven't kept it a secret either - most of my peers are close to my age (mid-thirties to early forties), most have had colonoscopies and most know what a perforation is. I do not spend time around people who make nasty comments. The people at my “office” (I work remotely) have been incredibly kind and supportive. The rest of my peers are at church, and that just isn't how they treat people.

I think you should work yourself up to changing it yourself. It's very empowering. My husband helped with my first change, and then made sure to be just outside the bathroom for my second - but now I've changed it several times myself and it gets better every time.

I've got the supplies from the hospital, I've ordered samples from Coloplast and Convatec, and received my first 30-day supply through my insurance (all Coloplast).

What kind of system are you using? I'm using Coloplast Sensura Mio Flex, it is a two-piece - a baseplate/flange and a separate bag, instead of a click-on system (also two-piece) or a one-piece (where the baseplate/flange is permanently connected to the bag) - all drainable bags. I drain twice in the morning and sometimes in the afternoon. I don't usually have much output in the later afternoon, so that is when I shower and change the bag if I'm doing it that day. I have not had any output since my shower 4 hours ago. I don't have much overnight output, but I have before - sometimes it clogs the filter, it's annoying.

I'm just feeling so alone.

I don't feel like myself anymore.

I guess I really need to quit feeling sorry for myself.

I just don't know how to not be so worried.

One way not to worry is to prepare for what might happen. Put an emergency bag in your car with a change of clothes and cleanup, carry stuff in your purse or backpack to clean and potentially change your bag if necessary. Put a waterproof cover on your mattress. 

It will get easier and become second nature. Pray. It helps relieve your anxiety. Write a gratitude list each day.

You're alive.

Hi Holtgrim. We MAO folks were all new to the bag at one time. Most of us were scared and nervous. Until we found this website, most had nobody helpful to talk to except our doctors and ostomy nurses. Here we are months and years later, not experts, but reasonably comfortable with where we are, what we learned from each other, and confident we can help newbies like you. You have us to “talk” to. Your husband is right; it'll be alright in time.

Respectfully,

Mike

Look to see if there is an Ostomy Support Group in your area. I found these very helpful and informative. Unfortunately, I don't have one close to where I live now, but I still have friends that I made and talk with from time to time. Maybe your local ostomy wound care nurse can help you locate a group near you.

I have had my ileostomy for almost 50 years. I still remember how scared I was back then but it has just become part of my life now and very grateful I had the surgery or I wouldn't have lived the life I have.

You are welcome to pm me if you feel more comfortable to ask me questions.

I've been a home health LPN for a long time, and they laughingly called me the colostomy queen. I had surgery at the end of June. I remembered that heat helps activate the adhesive that holds, well, all types of wound care supplies, etc., in place. When I change the bag, I turn on my heating pad and lie in my recliner with it on top, over my clothes, of course. I was using washcloths with very warm water at first. It helped at work, and it's helping me now. Yeah, those noises are something, though. But yeah, I'm still alive.