Do all your close friends/family know you have a stoma?

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DMac

Joined
Mar 9, 2012
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Location
Hertfordshire, UK
Hi :)

It may seem like a slightly odd question, but I was wondering how open you are about having a stoma. It make seem like a contradiction to state this, but I have a number of very good friends who have no idea that I have a stoma. Some of them I have met years after my surgery, and others I knew whilst going through all my Crohn's woes. Of all my friends, only a select few know I have a stoma and practically all of my in-laws have no idea I have one.

I must admit, I am very reluctant to openly tell people I have one.

How about you guys, are you very open about having a stoma? Or do you have any friends/family that don't know you have one?

Thanks
 
It may be slightly different for me as I have a temporary illeostomy, how temporary is anyone's guess though as they keep cancelling my operation!
All my friends know mainly because they have followed the whole process of me getting very ill to being diagnosed with Crohn's too the operation back in December. My parents know but I'm not sure if my cousins or grandparents know because, oddly, I haven't told them but guess my parents have.
However, slightly contradictory I get really irritated if friends/parents talk about it too other 'random' people. I have been asked whether - if I start my MA in September (hopefully having the reversal before then) - I would tell the people I meet at Uni, and I don't think I would.. I realise though I will have to tell potential boyfriends because of the scars
Oddly I go through phases where I would like to tell people because I want more awareness about the subject too not wanting the whole world and his dog knowing.
 
My family and immediate friends know. I actually enjoy talking about it. However, I will be starting back at school in a few months and I don't plan on telling anyone unless I have to, i.e., leak, noise, etc.
 
Thinking about it, I have actually told some people. I worked as a nurse for many years and on those occasions when I would come across a patient with a stoma, I would often find myself telling them that I have one, but only when I could see that the patient was struggling with coming to terms with having one.

I'm actually a 40 yr old male, and I tend to think that my not telling my mates was in part because I was too embarrassed. This was back in 1999, and having since been married, family and moved to a different location, I tend to think there was no real need for me to tell either my new friends or in-laws. Not that they will mind, on the contrary, I just like to keep this aspect of my life private.

Thanks for responding :)
 
there is no problem for me to tell. nonetheless, I don't go and broadcast. very few business friends know.
 
Hey, I have only had mine for 5 weeks but I have told everyone. I didn't want there to be gossip or rumours so decided to be very open from the start. I set up a blog and basically put it out their to the world. I have since been in the local paper and on BBC Radio to talk about crohn's and raising awareness for stomas. I have not had any negativity and feel so much better knowing i dont have to hide it.
Thats just my experience though! I know others who have chosen only to tell their close family.
xxxx
 
GEC said:
Hey, I have only had mine for 5 weeks but I have told everyone. I didn't want there to be gossip or rumours so decided to be very open from the start. I set up a blog and basically put it out their to the world. I have since been in the local paper and on BBC Radio to talk about crohn's and raising awareness for stomas. I have not had any negativity and feel so much better knowing i dont have to hide it.
Thats just my experience though! I know others who have chosen only to tell their close family.
xxxx
Click to expand...

That's fantastic :)

I wish I had that much confidence. I can see how being so open allows you the opportunity to share your story and help encourage others. Thanks for sharing.
 
GEC said:
I was terrified! So so scared about telling everyone. its not always easy everyone knowing! if you ever fancy a read of it its, www.giftofthegab1.blogspot.co.uk

xxxx
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Firstly just taken a quick read of your blog and love it!! It inspires me to start one myself. Just wondered if you're from UK or the US? The part of me that wants to get the word out there is completely inspired by your bravery by all things Radio etc and would love to be able to do the same. How did you get started?

I can understand the terrified part, I was doing a sponsored walk and did a just giving page which I shared on Facebook. The number of times I deleted that I had an illeostomy was insane, and then I thought; 'F*ck it, most of these people won't read it anyway..' I was so scared about what people's reactions would be.. but actually I don't think anyone that I didn't want to read it actually read it lol!
 
Hey! Ah thank you very much :) I just started blogging for friends and family who then spread the word I guess and shared it between friends etc. I'm in the Uk :)
Yeh i was very worried but once it was out there I felt relieved!
Everyone has been amazing! Including strangers and people I haven't spoken to in years. It's made me a lot more confident. X
 
GEC said:
Hey! Ah thank you very much :) I just started blogging for friends and family who then spread the word I guess and shared it between friends etc. I'm in the Uk :)
Yeh i was very worried but once it was out there I felt relieved!
Everyone has been amazing! Including strangers and people I haven't spoken to in years. It's made me a lot more confident. X
Click to expand...

I think that it's awesome that it made you feel alot more confident.. I could do with having some of that myself!! Thank you for the inspiration!!
 
When I had "Predator", as my stoma got nicknamed, I was totally open with everyone - family, friends and colleagues. Firstly because people would wonder what the strange noises were in a quiet environment - luckily no odours or leaks. But secondly, and probably more important in the grand scheme of things, de-mystifying the whole stoma (bag, pouch, call it what you want) expectation and fear.

When I was told you might have to have a stoma my reaction was "That's it. I'll never live a normal life again and be able to do normal things". This is probably a pretty standard reaction but the reality is so much better. The stoma nurse at St.Thomas', the lovely Fiona to whom I will always be grateful, said that we need a few personalities who have stomas to "come out" and raise awareness. Rather like Lance Armstrong did with testicular cancer and Kylie Minogue with breast cancer.

If you are going to be totally open with people it does bring with it some responsibility on your part not to go to far. You can usually gauge by someone's reaction if you're getting to the point where they are starting to feel uncomfortable. My absolute no-no was showing anyone my stoma. I know patients feel comfortable in doing that but it wasn't for me.

Finally, the thing that really gave me confidence wearing a stoma was an elasticated waist belt, like a weight lifter's support, that ensured the stoma always sat snuggly against my body and prevented any chance of the backing plate springing a leak.

Hope that helps.
 
I too am totally open about Ginger, my stoma. I wasn't in the very beginning, but now, I'm cool with her! It's to the point that my friends and family ask how she's doing!

I find that it has helped me to deal with her better. My friends and family have been extremely supportive from the beginning.

It also helps me explain her noises too! I just sayGinger has a mind if her own.
 
I was more than happy to tell everyone about my Stoma. Most of my work colleagues knew what was going in as they'd seen me looking so ill for such a long time.
 
I'm very open about it. Mine is permanent and recent, but I have been very ill for many years, and all of my family, friends and coworkers have known. It was just plain unavoidable given the severity of the Crohn's activity. So, when the surgery came up, everyone knew. Now, I've had frank and detailed conversations with only a select few...I don't want to gross anyone out, but I make it clear that I am open to any questions and happy to educate.

When I first went back to work, I was quite self-conscious about standing in the stall with my feet facing the wrong way...the velcro sounds...noisy bag, etc...but I got over that pretty quickly.

Everyone sees firsthand how much better I look and feel. They notice that when we go out to dinner I don't look miserable halfway through, make multiple RR trips and return to the table looking like death warmed over. I'm like an entirely different person and feel so amazing that I'm not at all ashamed of it and don't care what others think. Like I said, if someone wants to ask - I am happy to talk about it. If they just prefer to give me a funny look and pass judgement ... rock on with your bad self. Doesn't affect me or the gratitude I have every day for my new life.
 
I think everyone who knows me knows that I have one. Maybe I'm too open about it! I think it's because my on going health problems/surgeries often come up in conversation often and then I just feel the need to explain the story of my crohns and then my stoma etc. I'd rather be open about it than elusive and make people wonder what the hell I'm not telling them. Plus then they can see what someone with 'a bag' looks like.. ie perfectly normal!

Plus it makes for humorous laughter at work when my stoma makes weird noises!
 
I guess because I have been very lucky in that my crohn's has been in remission for a number of years, my constant battles with the symptoms would have put me in a position whereby I would have felt more inclined to share the fact I have a stoma.

When I was in hospital for months on end and constantly off work, unable to go uni etc... I would explain to my friends that it was my crohn's, but I just never went so far as to tell them that I had a stoma. All your posts have made me think differently, because your openness does help others have a better understanding and appreciation of what you're going through. I would be upset if I felt a friend couldn't tell me that they had one, so why am I so reluctant to share my story?

Certainly has given me pause for thought :)

Thanks for sharing everyone, much appreciated.
 
I guess it's a personal thing and some people may be scared that others would view you differently? Having a bag is a bit of a taboo subject. I always take the view that if I show others that I'm ok with it, then they should do too. Also I guess the longer you don't tell people, the harder it would become. Maybe that's why I tell people so quickly.

It's come in handy though.. once I stayed in a co-workers bed after a work christmas party (he was on the sofa) and I had the worst leak ever imaginable. Luckily as he already knew the deal he was really great about it all.. I dread to think of his horror at me waking him up at 3am and the sight he saw without knowing! Luckily I don't have many leaks but when I do I can count on the support of my friends when I do as they know the deal :)
 
I love the different names people give their stomas. Girlies seem to choose cute names that you can relate to. Men go for the macho end of the spectrum hence my one got named "Predator". No doubt there are many "Aliens" out there
 
I'm totally open about having a stoma and since my husband is such a big mouth and we own a shop so he talks to everyone in the community I assume that most people around here know I have one. I do get embarrassed if I mention I have one and then people ask what it is. Its kind of awkward explaining that basically you poo from your stomach......
 
When I had my stoma I named stomy I was very opened and loved talking about it to anyone that wanted to listen. I was cool with all the jokes they made I wanted it to be something that didn't bother me so much so actually I knew with my friends if they were gonna say something crazy to my face theirs not much they are saying behind my back and also I'm all about spreading awareness. The only time I felt uncomfertable is when a guy would flirt or want to go on a date or something I just felt I was off limits and that area of my life was gone.
 
I've been thinking about this too. I start Uni next month and I don't think I'll tell anyone. Only my parents, bros and sis' know that I rock a bag. I should be getting it reversed in about 6 months time (which atm seems 6 years away) so thinking there's no point.

I'm just worried they'll find out cos I normally wear fitted clothes and hoping th noises don't expose me. But having read some of the comments above, you guys are amazing and wish I was like you guys.
 
Yip told everyone and its been no bother,everyone was just glad i was finally going to get my life back instead of hiding away because of the grip on my life my crohns had,missing weddings,funerals partys,kids school shows and so on,now i wont miss a beat...

Honesty is the best policy....
 

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