Living with a Stoma: 5 Months In and Feeling Alone

Hi all, just found this site. A bit bewildered as to what to say. 5 months in, wow, life-changing. You feel so alone.

Hi Mark, 

I'm a little over 5 weeks post-op. And yes, I am dealing with the loneliness. Part of it for me is this is still so new. I'm trying to keep positive thoughts. I'm an anxious person by nature, so this whole situation has been a challenge. 

This site is amazing. So many kind people. And the information I have learned is invaluable. 

Take care!

Hi, thanks for the reply. I will be on here as much as possible. I went in for a routine colonoscopy, and the person performing the procedure walked away and left the camera inserted, thus causing damage. So I have ended up with this bag, and I have to say struggling is an understatement with such a life-changing situation. But you know, it is what it is. I'm still here, alive and kicking, so I have to come to terms with the hand I have been dealt.

I've been trying to come to terms with it and accept it as who I am. Not sure if it's taking me a long time to adjust or if this is normal. I had an ostomy as a child and the thought of going back had also been my worst nightmare. Some days I catch myself that I have forgotten about it for just a moment, or I appreciate the fact that I'm here... can't forget that. I'm slowly coming along, it's just lonely because no one gets it… but the awesome people on this site. It helps me be more positive and not feel as alone.

Hey Mark-

It's been a year and a half for me, and I still feel like a freak, which is stupid as hell because nobody can tell that I've been modified. I would recommend humor as a way to get the mind right. Monty Python, online scare videos, whatever works. Laughter is the healthiest thing in my life right now. My radiation oncologist is the funniest person I know, which blows my mind being in such a serious profession.

Thank you. I think this is going to be a great site for me, and a big thank you for welcoming me to your family group of friends.

Laughter is free, so we can say a smile a day keeps the gremlins away. Thanks.

Welcome to the site, Mark1. I am glad you found us. I am so sorry you had such a life-altering experience from pure negligence. I think it's perfectly normal to feel alone at first, but you have taken the first step to gain healing and acceptance. We are all here for you. Reach out and ask any questions you want and just vent if you need to. Try to keep busy if you can.

Thank you so much. I don't know how others feel here, but for me, the worst thing is people's ignorance. I was in a restaurant and passed wind into my bag. We all know it can't be controlled, and I ended up having to explain myself. I don't think I should have had to. It's a personal thing I have no control over.

Welcome Mark1.

The camera was left in, and the technician/doctor walked away. Unacceptable negligence. Many good folks on this website were damaged during routine colonoscopy or cancer imaging, resulting in an ostomy.

Is yours a colostomy or ileostomy? Can you eventually get a reversal?

I was at dinner tonight at a restaurant. My little red beast was making loud sputtering noises. The waiter stared at my stomach. I smiled and said, "Oopsie." The poor waiter looked confused.

An ostomy does not define us. I'm not embarrassed or give a hoot when people stare at my tummy bulge. I survived a seriously nasty medical adventure, something relatively few people will ever experience.

Hang in there. It's very hard at first, both mentally and physically. But life does get better.

Hello Mark1.
Welcome to MaO and I see you already have had some great correspondence. 
I know from experience that coming to terms with medical negligence can make the emotional journey worse  than might be otherwise endured.
However, I hope that you will be strong  and adjust to the new set of circumstances as quickly and effectively as you can. 
Best wishes

Bill

G-Day Mark1, I hope you sued the crap out of the guy that caused this. I hear of so much neglect from the medical personnel. I think they need re-educating. Regards, IGGIE

Mark1 I never apologize for my noise. If someone looks; just let them look. Their problem, not mine. 😂

Hi Mark, welcome to the site. There's lots of good folks here and great info. Funny story: I was at my daughter's for Thanksgiving, and after a couple of forks of food and a sip of water, my stomach gurgled and then the pouch made the crackling sound as gas passed into it. So I just commented, "My stomach wants more turkey and stuffing."

Welcome to the site, Mark. I have to agree with IGGIE in saying I hope you sued the bejesus out of the idiot that left the camera in your colon. Accidents happen, but that sounds like pure negligence and the person should suffer consequences.

Lots of good people here with all kinds of different ways they ended up as an ostomate. There is always someone that has a situation similar to you. Don't feel shy to ask anything related to an ostomy. Someone here is bound to have an answer. :-)

Daniel

Hello. I too have a similar story, so I can relate. It's a life-changing experience, but you will adjust. Hang in there, it gets better! Hugs!

Hi, no, for me, not reversible, too much damage. Hey, I'm alive. There are so many others out there less fortunate. Sounds like a humbling thing to say when we're all at where we are.

It is in the hands of a legal team. The hardest thing for me is the fact that it hasn't been taken seriously, and the person involved wasn't even suspended pending an inquiry.

Yes, I get that. The hardest thing for me is it made me very defensive. I had a poor man in a wheelchair ask me why I was using the disabled toilets. My reply was, "Why are you wearing trainers?" This isn't me; I wasn't made that way, but I have become so very defensive.

I must ask if I may, as you said I could. I have a stoma, and it bleeds so very much when I clean myself. Please, is this normal?

It will get better; I promise. Try not to take it so hard. People just don't know.

Thank you

Thank you all for your kind words xx

Hi Mark,

Stomas do bleed easily. Only use a wet paper towel to clean the stoma. Toilet tissue will stick to a stoma.

Be careful. Stomas have nerves that quickly become desensitized. You can't tell how hard you are rubbing a stoma. So take it easy. It's not necessary to get the stoma super clean. Just get the big bits off.

It takes time. Healing, learning stoma care, changing the wafer and bag. Also finding the wafer and bag that work best for you.

I'm a year post-op and have gotten to the point where I don't notice my stoma anymore. I can "burp" my bag without looking.

Take care and don't hesitate to ask questions.

Thanks. I have since having the operation been thrown in the deep end, only seen the stoma nurse 2 times, and been given no aftercare, so I'm blind as to what to do. I was given the spray to remove the pouch and dry wipes, that's it, guys, so any advice I would appreciate.

Hello Mark.

I use a plastic half-cup filled with warm water to rinse my stoma each day before gently wiping it. This rinsing gets rid of most of the residual output which is stuck on the stoma and softens the rest enough for it to wipe off easily. 

My half-cup was supplied many moons ago by one of the manufacturers, but I have found a spare, which is what my prawns were packed in from the supermarket. 
Best wishes

Bill

Hey Mark,

There is a lack of training for dealing with the care of a stoma. But there is a lot of experienced advice on this website. It doesn't take too long to discover what works for you and your unique situation. It used to take me a long time to change the wafer and bag. Can "get 'er done" now in 15 minutes.

As far as blood from the stoma is concerned, Beachboy gave a pretty good answer to that. The stoma should be dabbed with a damp paper towel and not wiped. Even so, seeing a little blood is normal. Obviously, bleeding profusely would be a problem. :)

Daniel

Thanks for the reply. I'm getting more advice here than I have from the hospital over here in the UK.

Won't post a pic, but there is, from what I think, a lot. It covers a wipe in one wipe. Lots of little lumps on my stoma, but I have been told I'm in the early days, 5 months in, and still going through the settling down stage. I have to be patient.