Adjusting to Life with a Colostomy: Seeking Support and Encouragement

Replies
28
Views
1249
Rotten_Apple
Mar 04, 2023 1:34 pm

So I am new, just had surgery last week and been feeling down. Doctor said there is a good chance of being reversed so that made me hopeful. Thing I dislike is wearing a bag and how gross it is. And how my boyfriend is now supportive.

CrappyColon
Mar 04, 2023 2:39 pm

Hi!!! It's really normal to be experiencing the feelings you are going through. I had an ileostomy so not quite the same but having a bag and all that- been there. You're surrounded by people who have gone through the same or similar procedures. Ask pretty much anything. I had a difficult time being grossed out by everything too. For me, some of that faded but sometimes I was still like, "What the heck?!" I did better with opaque bags vs clear ones. There are products that help with smell. It sounds like you have good local support? You're stronger than you know and will be able to do all the things.

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 34,000 members who truly understand you.

It's not all about ostomy. We talk about everything.

Many come here for advice or to give advice, others have found good friends, and some have even found love. Most importantly, people here are honest and genuinely care.

🛑 Privacy is very important - we have many features that are only visible to members, ensuring a safe and secure environment for you to share and connect.

Create an account and you will be amazed by the warmth of this community.

mkowick777
Mar 04, 2023 3:01 pm

Boyfriends.....so overrated!

So let's change our mode of focus for a second...are you better or worse since you had the poop leech (aka the bag... The porta potty.....the thing!)

I'm going to guess your health has improved since your operation...so there's a plus!

Your doctor said you have a great chance at reversal... Bonus #2!....

Did I say boyfriends are overrated???

Yes...yes I did...

You have to focus on the positive here! These are the small little stepping stones that will carry you past all the stigma of having..."the bag!!" You need to also focus on getting stronger post-op..

Yeah they can be an adjustment but once you're past all that and realize that this little inconvenience gave you your life back...it's not so bad...

You got this!

You're still an amazing person who will do amazing things!!..you're still beautiful!

You also have an amazing support group here! Any questions, don't hesitate to ask it here!

So don't feel down (normal response by the way...) Shake it off and keep moving forward!

Be amazing sister warrior!

Dg44

AlexT
Mar 04, 2023 5:35 pm

If your boyfriend is supportive, that's great. If they have you wearing a clear bag so they can monitor your output and healing, you can change to a non-clear bag soon, then you don't get to see it 24/7. Get some lubricant/deodorant for the inside of your bag to keep the smell down when emptying. If you're having odor when you're not emptying, you may have the start of a leak because you shouldn't be smelling anything except when you empty. Good luck, ask anything you want.

w30bob
Mar 04, 2023 7:04 pm

Hi Rotten,

Hang in there girl... it gets better! And yeah, it is gross... that was my first thought as well. Not sure if you're saying your BF (Best Friend or Boy Friend) is supporting or not... but either way will tell you something important about them.

You've come to the right place... you can ask any question... or discuss any issues or conditions you're having. We're all in this together... so welcome aboard... even if just temporarily!

;O)

Bob

 
Living with Your Ostomy | Hollister
Bill
Mar 04, 2023 7:05 pm

Hello Rotten_apple.
As with other replies, you are not alone in how you feel in these early days, but after a while we get used to things we have to do and what we need to put up with in order to manage the situation. 

I used to write rhyming verse about almost everything I went through in those early days, as this helped me to put it all in perspective and move on to the next phase. If you are interested you can read my rhymes in the 'collections' section at the top of the page.
It sounds as if you are fortunate if you have a chance of reversal at some later date as that will be something to look forward to.  If your boyfriend is being supportive, then that too will be helpful if you allow it to be.  Some people/partners get grossed out in much the same way that you describe so if he hasn't done so that's got to be a bonus!

I wish you well on your journey and can assure you that the whole experience can be a valuable life-learning process, if you perceive the opportunities  rather than dwell on the negatives.

As others have said - please feel free to share your frustration and questions with us and we will attempt to share our own experiences. (which are likely to have been much the same as you are going through now).
Best wishes

Bill 

Morning glory
Mar 04, 2023 7:24 pm

Welcome to the site. It is normal to be depressed at first. It's a life-saving process but you have lost a body part. I would give myself time. Things will get better for you as you adjust. You have a chance for a reversal so that's something to look forward to. Who knows by then you may not even want it by then.

CrappyColon
Mar 04, 2023 7:37 pm
Reply to w30bob

Just so you know, he calls me crappy, so being called rotten is nothing.

w30bob
Mar 05, 2023 12:52 am

Hey Choo-Choo, what are you laughing at???

;O)

ron in mich
Mar 05, 2023 2:01 pm

Hi Miss Apple, the feelings you are going through are normal. Grief, anger, depression, the whole gamut, and it's all due to the trauma your body has been put through. The one thing I recommend is to get out and take short walks. The fresh air helps, and you'll get an appetite, but eat small meals throughout the day and food favorites. For me, it was pasta with meat sauce, cheeseburgers, and fries. Good luck.

Ostomy4life_22
Mar 05, 2023 7:12 pm

Hey girl. I had a colostomy back in October last year. I went from an ileostomy with a parastomal hernia to a colostomy. I will tell you that it was the best thing I ever did for myself. In this group, you will find everyone so helpful, so kind, and very knowledgeable about conditions. Also, google about colostomies and read articles. I still do that to this day. I have come on this page and asked questions and got very helpful responses. Don't be angry or upset with what's going on. And if it helps, some of us have named our ostomies. I call mine Frankie for Frankenstein. Sometimes you just have to have fun with it. I hope all our responses have helped you out. You're the best and don't hesitate to ask anything. We're all here to support and help with anything you need.

gentlejohn
Mar 05, 2023 7:39 pm

Why did the surgeon do a colostomy?

I have an ileostomy which is a lot harder to manage. Yes, it is normal to feel down about a stoma but it is better than the disease that necessitated the colostomy. The colostomy might have saved your life.

Redondo
Mar 06, 2023 1:00 am
Reply to AlexT

If you have to wear a clear bag, there are pouch covers that you can buy. I definitely don't like clear pouches for myself but I have had mine for almost 50 years.

CrappyColon
Mar 06, 2023 2:50 am
Reply to gentlejohn

Just curious, as you know I am about how things work, why is an ileostomy so much harder to manage than a colostomy?

warrior
Mar 06, 2023 4:15 am
Reply to CrappyColon

Good question. Me too. Curious how's it different or more difficult? They both suck having.

warrior
Mar 06, 2023 4:44 am

Rotten-Apple, pls clarify. You mentioned your BF is "now" supportive. Did you mean NOT?

We are assuming it's"not supportive". He is not supportive.

Also, "NEWBIES" like youget very confused abouttheir type of surgery. Even in hospitals these professionals call it a colostomy when I have an ileo.. it pisses me off to explain to these "professionals" what they are calling it, is incorrect.. The thought is by calling a colostomy you still have your large intestine. its just a piece cut out for whatever reason.. the bag is there to help healing process.

then the intestine is reattached.. and hopefullyyou poop the way you were born to.

However, ileostomate hasno large intestine. Uses your small intestine as your stoma. the pathway for poop. and sometimes the small intestine can be attached to the rectum . such would have been my case. so when professionals say were are gunna xray my colon,a.k.a large intestine, I am not very nice to them in response. ( yea latent anger issues for sure when it comes to stupid people like this)

anyways back to you. you do have a colostomy, correct? not an ileostomy? I was told ileos are located on your right side and colostomy on the left. So which side is your bag.? This is a good identifier if things went well with your surgery and placement. there are excepts though. none I want to speak of now.

secondly, your BF?he will prove to be either a testament to a good, loving, understanding person, perhaps future husband if he can see past this bag thing. OR he will a douche. Do this.. give him a wafer, give him a spare bag. give him a taste. and saynow we are equal. how do you like that.?again this will either make him or break him. if its the former, kudos.. if its the latter, cut your loss . you have your youth and are quite a beauty.

You are going through what we all have: a stage. Not sure how many stages there are exactly, but like with cancer, or any other horrible livable disease there are those times.

Each of us has been in your situation. We are here for you. good people. good advice. and yesyou can find perhaps a better guy here too. Talk to us. .. Warrior

warrior
Mar 06, 2023 4:52 am
Reply to w30bob

His caboose fell off. That's what.

How's it hanging Tonto? You get that red dress from Victoria's Secret I sent you for Christmas? :0

Warrior in the house. Look out.

Ebony&Ivory
Mar 06, 2023 4:57 am

Ileostomy is more difficult to manage because the stool is more liquid. Mine goes from watery to mashed potatoes consistency depending on what I ate and drank. If I drink a lot of water then my stool is more watery.

My bowels move constantly and my bag requires emptying several times a day. The liquid consistency is more apt to cause leaks. Having a good seal is of the utmost importance. I have to change my system every 3rd day as my seal is giving way. I nip it in the bud before it becomes major.

I've heard with a colostomy your bowels move normally most of the time. That's 1 - 3 times a day and your bowel movement can be managed and trained.

Chiquis
Mar 06, 2023 7:16 am
Reply to Ostomy4life_22

I call mine Stella (the stoma). Lol

w30bob
Mar 06, 2023 10:28 am
Reply to warrior

Warrior....is that you??? Good to see you, bro! Hope all is well. Don't be such a stranger (said the guy who frequently disappears and then reappears)!

An Ileo is more difficult because without any parts of the colon, our output is more liquid than solid, as the small bowel can't absorb water like the colon can......so hydration becomes a real challenge. Also, many Ileos have their ileocecal valve (which modulates the flow of output into the colon) and part of their terminal ileum (where 95% of our bile is recycled) removed, which again makes our output more liquid than solid, and stresses out our livers (because it has to constantly make new bile instead of only making 5% new).

Having a colostomy is more like simply moving your asshole to our abdomen, assuming they didn't remove too much colon in the process......so none of the other digestive processes are impacted. You lucky devils, you!

;O)

Justbreathe
Mar 06, 2023 12:22 pm

You have certainly come to the right place! It took me over a year to go in search of some sort of support group. If it wasn't for this site and all the helpful and informative folks here, I'm not sure where I'd be today. This group of "on-the-job osties" have been through it all. Some so much more than others in terms of illness and surgeries, and many at early ages, and still they accept and move on, encouraging others as you can see by the replies you have received. Chin up from one of the beneficiaries of finding these wonderful and helpful folks. Wishing you well on this journey no one wanted to take but have managed to survive and thrive. Hugs, jb

ruthietito
Mar 06, 2023 5:02 pm

Coloplast products are great. Read about the many out there. Work with your ostomy nurse. Be patient with yourself. Be thankful, seriously, that your doctor found the problem. Learn all you can about your issue and how to change your bag. There are some great videos online done by other ostomites. I had my bag for 23 months. Been reversed for 10 months! All is fine. Good luck!

ruthietito
Mar 06, 2023 5:12 pm

One more thing: Remember, you are unique. Read all that you can about colostomies, but some information may not be applicable to you.
I held off from my reversal because I read so many stories about diapers and anal leaking, etc. I was finally ready. Listened to my surgeon, and never looked back. I am 72 and in the best shape of my life. Hang in there. One step at a time. I had the support of my friend's husband and a retired nurse friend. Both are 10 years in and cannot be reversed. They were a Godsend. We shared funny stories and many helpful hints.

gentlejohn
Mar 06, 2023 6:40 pm
Reply to CrappyColon

It has to do with the output. An ileostomy's output is more liquid than a colostomy, therefore a solid seal is important to keep the output off the skin. Also, when do ileostomies function? Answer: Whenever they want to. Although the output can be somewhat predictable based upon when and what you eat. Colostomies can be irrigated and regulated. Some people with colostomies do not wear skin barriers between irrigations. They may wear a security pouch or patch to keep the mucous off clothing.

papaboo
Mar 06, 2023 8:53 pm

Hello, I also have a colostomy and finding the right device to wear will change as your education and experiences with your new friend continue. Contact all manufacturers and get samples. I fortunately was able to get samples before my surgery; otherwise, I would be wrapped up in a sheet with a lot of poo. I learned everything from YouTube. Also, get a nice stealth belt. I prefer Coloplast products; you may like something other. And since you were told it may be reversed, I hope you were told about the anal discharge (mucus); it can be an issue. We all have different reasons for this change; mine was due to a condition that goes by 100 different names: Levator ani syndrome, Pelvic floor dysfunction, Anismus, also called dyssynergic defecation, and it goes on and on. I am fortunate to have good insurance and I don't need to work. I don't know how I could, but that's mostly due to my other issues, but that's another story for another time.

CrappyColon
Mar 07, 2023 4:02 am
Reply to gentlejohn

Thanks for the explanation!

Riva
Mar 10, 2023 1:55 pm

I am also from Florida. Don't let wearing a pouch define who you are and most importantly 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. We're here for you. Best of luck.

warrior
Mar 11, 2023 12:39 am
Reply to w30bob

Yes, it is me. I check in from time to time. Last we heard from you, it seemed like you were checking out for good. All that stuff about going to the hospital had us all worried, Farm-man. But glad to see you back in action. We are all survivors. Getting my Ken Butt (not Barbie- up hers) soon. On the fence about it but life will be much better without leakage. Six long years it's been so.... Alex has been very helpful with info, among others. My biggest concern is if this somewhat cures or curves the Crohn's, I will be grateful but the concern is where will it go next? You know it travels, has an E-Z pass in me, goes all over. Stay cool, Bob.

-Warrior

w30bob
Mar 23, 2023 8:26 pm
Reply to warrior

"Has an E-Z Pass in me.. goes all over. Stay cool Bob.-"

I laughed my ass off when I read that. I just hope all the non-East Coasters get it. Not sure how far E-Z Pass has traveled throughout our communist country. When it first came out I thought it was a cool thing. Zip through the tolls and the Turnpike and GSP would be pretty awesome. Then it spread to states both north and south. Then became mandatory on toll roads around here.......or they take a pic of your license plate and send you a bill for way more than the original toll. Without giving you any other options while crossing that bridge or tunnel. Nice. They got me twice when I went back to NJ for my Mom's funeral. Sent me 2 separate bills, which I let sit for 30 days by mistake and ended up paying 72 for 10 in tolls. You know what they say Bro........thanks for the memories!!

But who gives a shit about that crap. Glad you checked in. Sounds like you're still going through hell and back. We all know traveling the same road twice isn't nearly as much fun as the first time.....Crohn's Boulevard included. But hang in there. Why the hell Dr. Crohn would have wanted that shit named after him I have no idea.........but fame does things to people. Whenever my Doc reminds me that Crohn's can manifest anywhere from my mouth to my asshole I picture myself wearing two bags.......one on my face and one on my abs. Maybe THAT would shut me up. Nah, probably not. It's a heartless, ruthless disease and you deserve a break for once. Let me know if there's ANYTHING I can help ya with........anytime.

;O)