Living with a Colostomy Bag: A Return to Normal

Living with a colostomy bag can be a frightening prospect for many. The ostomy team at UVA Health explains the steps of care that an ostomy patient undergoes before returning to a life without limitations.

Transcript:

Traci Hedrick, MD: When patients hear that they're going to have a colostomy, it's obviously a very frightening concept. But what I'd like to tell the patients is that it takes about two weeks for them to become experts, and then they know infinitely more about it than I do.

A colostomy is basically a portion of the colon on the skin that is covered with a bag. Most hospitals have a wound ostomy team, and they are the unsung heroes of the hospital.

Mesha Jones, RN: We all bring something different to the team because we all have different experiences. Part of the wound care team at UVA may be different from other facilities because we collaborate with lots of different teams within the hospital. We offer physical therapy and nutrition to make sure that the patient has everything they need before they're discharged home.

Elizabeth Gouchenor, NP: We have a class that we have for patients before their surgery. We educate them during the hospitalization until they go home.

Charles Friel, MD: The most common thing that people say to me after I've created a colostomy is, "It's not as bad as I thought I was going to be."

Once we correct a good functioning stoma and you work with your stoma team, you can have a system that works incredibly well. You should be able to live the same life that you're living without a stoma. So there really shouldn't be any long-term limitations.

Jones: Common myths and facts about ostomies are that, “My life stops and everyone will know that I have an ostomy bag.”

One thing that I like to tell patients that no one needs to know you have an ostomy bag unless you tell them. You can be as active as you'd like to be.

Life still goes on.

[gibbstuff]

I had cola/rectal cancer and had resection surgery in May 1993. 30 years ago. I was 40 then and 70 now. Still cancer free. God is good. I’ve never had much of a problem but I found out a long time ago that most public restrooms are not going to work if you have to use one. The ones you where you can lock the door are about the only solution.
I had one the best ET nurses in the world and she helped me a lot.

[michelebreen]

There are a lot of negative comments on this thread. I have a dear friend who has had a very positive experience with his ostomy. Some people don’t have a choice and this is life

[dharmakanchan]

I too actually find it difficult and embarrassing to manage it, but just to keep myself at peace.I need to tell myself all is well. Can't help it..face it 😊

[dawnoladeni]

I’m currently living with an Ostomy and I despise it wholeheartedly.. I have become severely depressed and have so much anxiety about it that I can’t go out anywhere except work or maybe to a family function but nothing publicly because it’s so embarrassing to me

[barrett]

I had a colostomy for over five years luckily I don’t have it anymore. But I can absolutely tell you it is the worst thing to ever have. I mean your whole life it’s around this colostomy bag. My bag would burst quite a bit. And you would wake up in the middle of the night with Vile all over you and your bed. I Wouldn’t wish this on my worst enemy.. And the acid coming out of your intestines would burn the skin around the Soma.. Life does continue to go on. But it can be very hard and very challenging. Actually after the surgery and everything. My ex left me high and dry. It will probably Affect your love life. But luckily most people that have a colostomy bag after a couple years can get it reversed. Thanks God.. I am not trying to scare anyone. I am just telling you from my experience..

[catherineb]

I so miss my Commonwealth especially UVA VCU MCU...all the great doctors and nurses.. Florida is a different place.Hubby just got his Colostomy Wed.. He has Parkinsons with probable Lewy Body dementia so I will be taking care of it.. I haven't slept more than 6 hours in 8 days now and was asked why I hadn't read the 400 page booklet that was just placed in the room this morning...and has my husband read it ?...I told him husband currently thinks there are seagulls at the foot of his bed 🛌 who want to steal his socks...He then said we must establish a schedule for stoma care...I'm like we are on parkinsons time...and Lewy body likes to shake things up...I don't think the ostomy nurse understands..so thanks for giving me a little comfort from home💝

[shehanwijekumara]

My grandpa using this since 3/4 years. It's really difficult to find good quality colostomy/ostomy bags & other elements like coloplast ostomy gel & others of it because the current finance crisis situation in our country Sri Lanka🇱🇰 We are spending very much for those cause very expensive & rare to find here. I really need help from the International friends/audience to help the people who are using this with proud. I hope for your help as soon as possible ❤
Humanity is forever immortal !!!

[kebirbenkaccem]

My ostomy bag on left side is creating a little bulging size of baseball, looks like a swollen upward, a little mountain kind of...any one out there experienced similar volcano appearance around their stoma??? I am going to an appointment with my surgeon this October 17 but i thought i would reach out to all people who use bags ... my thanks to anyone who answers me...

[tifanifisher]

I find it funny that non of you have one . SO LIFE DOES CHANGE . You change ... its a new normal and your life is built around what your stoma needs and does.

[Sleevecake]

I am tired of people sugar coating the stoma. I was lied to, told it wouldn't smell, told my life would be normal. As a result of doctors/nurses not being upfront and sickeningly positive I am not coping well in the slightest. My quality of life is non existent. I go to the bathroom sometimes 15 times a day due to high output. I dig poop out of a bag over and over and over and I smell poop all the time. I wake up with a literal balloon hanging out of my pants every morning and have not had sex since I got the damn thing. I'm so tired of everyone online not being upfront. Some of us hate the stoma and that is OK. Before saying yes or no get all the facts. I know there are people that are much better off and the stoma has helped. I am not one of those people. I am 35 and just wish I hadn't woken up. Be damned how everybody else feels about it, please no more toxic positivity.

[YARA_THE_PITAARA_]

What i can do with clostame bag what tipe of work i can do please tell me thanks and some time little water come out from rectom what is this don't forget thanks

[joseyspergon]

Not all hospitals have A class on how to take care of one or there nurses are trained on how to do the procedure.

[Theworstchannelposting]

So what do you say to people that's in a wheelchair, with a baclofen pump and a suprapubic catheter that's doctors want to put a colostomy bag on? Why don't doctors take all of that into consideration instead of telling me generalizations? Because everything in this video is what I heard from my doctor, which when your video speaks on leaves me out of consideration becasue you have to talk in the general most common use of the bag. Why don't we have curriculum on how to handle a person with 3 devices compared to a patient with none?

[Thomas-guhu]

Is it a disability when you have a colopy

[arnarajagonase]

Hello I have a colostomy bag since birth until now 🥹

[gomsthing]

A drunk driver drove straight in the inside of my car I had to have emergency surgery I was bleeding internally loss my small intestine I was told I would be put back to normal in 3 to 6 months yes don't believe anyone this crap doesn't make life easy I hate it an I cry so much the wreck happened 3 weeks before my birthday 😢 my birthday was the worst it leaks u can't eat nothing u can't take a hot bath happy where I'm not happy 😢

[karenp]

our experience is not good!! you can not be as active as you would like to be especially if it keeps draining!!!!

[tripps]

I’ve just got my bag and I hate it and because of it I also hate god for doing this to me