Social Anxiety

So I've had my colostomy for six years...but I still struggle day to day with social anxiety (waiting rooms, elevators, public library, sitting in a dentist's chair, etc). I work a full-time job and everyone there is great and I'm comfortable with. It's everywhere else that I'm frightened to go....mostly of fear of sounds and smells that might come from my bag. I start to panic when the room is really quiet or if people are within close proximity.
I even find myself turning down parties and get-togethers of people who don't know I have a colostomy.

Any suggestions?

I don't really know what to suggest to you. I have a colostomy as well and I guess I really don't care what others think. Mine has given me my life back, and if that means that it makes the occasional noise, so be it. I can't control that, so I don't worry about it. But then again, if he makes noise I tend to say excuse me and that I can't control it. I've long since gotten over being embarrassed....lol

I don't find that mine smells at all...maybe you need to look into changing appliances if you find that yours is smelling at all (besides when you're emptying that is). I also find that wearing something tight over Oscar quiets him down for a bit...not sure if that would work for you or not, but it may be worth a try.

Since you've had the colostomy for 6 years, I'm assuming it's permanent? Mine's permanent and I've just accepted the fact that it is what it is and if people don't like it, that's their problem, not mine. As I said to a friend recently...I'd rather laugh about it than cry about it. But that may be just me...

I hope you get over the anxiety...it's really not worth putting your life on hold for. Good luck to you!

Hi Janelle! I don't have a stoma so please feel free to use or lose this suggestion, but a cognitive behavioural therapist might be able to help you be out and about with less anxiety again (just 3-6 sessions work for many people, with homework in between sessions). Take good care!

I have had my colosony for 8yrs and it has been a blessing in disguise. But I too have problems with smelling sometimes. And I try not to get to close to people in confined spaces. I use a product called M-9 when I can get it. A few drops in a clean bag will keep the smells away. Or a cotonball dipped in mouthwash at the bottom of your bag can work too.

Janelle,

Really sorry you are having anxiety problems. I had a few when I started working again after my Op and they were centred mainly around the sound (mine is a very loud stoma!) and also the smell.

I went from being at home recoverying with no social contact therefore no dilemas to commuting into a big city working in a busy (but reasonably quiet) IT office. I decided that there must be something I could do about it. Here are some hints that have helped my confidence grow through the roof with my stoma in social situations:-

1. Eat a probiotic yogurt for breakfast. I didn't realise how much this thing kept my stoma reasonably quiet during the day until I gave it up. It worked great and I guess it must deal with bad bacteria promoting gas build up in the intestine....or something like that.

2. Get a stoma waistband. They are invaluable. I have even adapted mine with a small square piece of oven glove material that sits just over the stoma area to muffle any noises that may happen.

3. Get some indigestion chews that contain either simeticone or Calcium Carbonate to help dispell gas. In the UK I use Rennie tablets after each meal. They help me to burp out gas rather than let it go through the stoma. It's amazing how quiet and much less embarrassing controlled burp can be!

4. Try to concentrate on swallowing less air. I found myself just nervously swallowing air when I went back to work, and for no good reason! I stopped this and I found this also really helped!

5. For the smell, add something to the bag to counteract it. I use peppermint oil drops at the start of each day. After I am done in the toilets they smell minty fresh!

If you do find your bag smelling in between emptying, I would try out a new brand of bag as I would say the filters in them are not working as they should.

I hope some of this helps. It has allowed my confidence to fly and helped me to overcome nerves in many situations.

Gav

Hi janellespring,

I put my hand over my stoma when it kicks off, it seems to suppress the noise. Also, I feel like Nyx, I really don't worry about what people think, especially when I can't do anything about it. Perhaps the more you find yourself in different situations, the more you will begin to relax.

Love Kaz xxx

Hi Gav,

How do you put the peppermint drops in to the bag? And where do you get them from?

Thanks,

Kaz xxx

Thanks everyone for the great tips! I try and remind myself that I shouldn't care what others think, but it's easier said than done sometimes....

I'll try some of the suggestions and see what happens!!

My experience is that people hear the noise and always assume it is belly issues. Prior to the surgery it really was the stomach and large intestine. They do sell products to put in your bag for the smell.. I believe hollister is one, there is another that literally is one or two drops and it kills the smell. They also have packets of crystals that thicken the output if it is too liquid. I know I went online and found a few places that send out free samples before you commit to one or the other.

KazT17 said:

Hi Gav,

How do you put the peppermint drops in to the bag? And where do you get them from?

Thanks,

Kaz xxx

Click to expand...

Hi Kaz,

I probably should have worded that better. I use the small peppermint oil bottles you can get from many places. The ones I get are from Boots in their aromotherapy range.

The bottle has a dropper top to empty the oil (the kind you get at the top of vinegar bottles) and I simply put a few drops in the opening of my bag each morning before I head off out. It lasts right up until evening with just a few drops in.

You can get similar stuff on prescription but in my experience it doesn't last as long and isn't as reliable.

Gav

Hi Janelle! I've had a few anxiety problems myself. Sometimes I still do! Because without fail, if I go out..something happens. At work I just put a hand over Stan to make him shut up. If I have to, and Stan surprises me, I just make a joke over it. (salute to the Queen!!!)

But yes, it can cause problems. The leaks are what get me. Especially when I had a parastomal hernia. Oi vey did that cause issues! I have to admit, I dont go out alot anymore. Part of it is fatigue, flaring, starting 6MP, no clothes to fit anymore now that my abs are shot and look 9 months prego, etc., etc., ......So I go to work and pretty much come home. Could also be the fact that I cant afford going out!

But to be afraid of Stan making noise or smelling...noooooooooooooooooo. That wouldn't stop me one bit! If Stan smells, I shouldve used tape, or I have applied the wafer well enough. Alot of times, no offence, it's in our own minds that people hear anything, or smell anything. And as for emptying, show me one person whose shit doesnt stink, and he'll be called a messiah! Yes the drops help, and I have all sorts of essential oils that I can use, but I dont.

At some point, we have got to get to the point where we say screw it and start singing " I am what am!!! " Preferably I'd like Stan to sing it, however, his voice just isnt up to it...yet! LOL!

Hi there,

I'm going through the same anxieties as you are. I've had my colostomy for nine months but since I've gone back to work I've had a few mishaps where my bag has leaked or Sally has decided to make herself heard. Quite embarassing as I work in a very overcrowded office. I try to keep my head down but always find myself going bright red. I'm hoping to get my colostomy reversed in the next few months but in the meantime, I feel your pain xx

In reading these posts I see I am not that crazy. I have been calling my stomaby this name for years now....Mt. Vesuvius. Always erupting at the most inopportune times. And spouting gas in a noisy fashion. I just have to press my hand down and hope nobody hears me

I also have these same anxieties. I've had Page for 7 years, and I still battle with it at times. I am so thankful b/c with out having this I wouldn't be writing this. This past year I had 3 surgeries and 2 were for the stoma. I am just now coming out of a deep depression, but I am struggling with anxieties as well. I can deal with the other issues, on noise, etc, but for me it's dating....thats my main anxiety...

I struggle with being accepted by a guy -I've dated in the past, and the guys I've dated I didn't tell right away, but when the time was right I did. And, they were just so glad I was alive, that having an illeostomy didn't bother them. It bothered and still does bother me more than it does them. So, I am learning to get over that and realize it's just what life has dealt me.

When mine does make noise, I also just put my hand over it, but so far in 7 years she's been on good behavior! And most of the time if she does make a noise, whomever I am around they think it's their stomach and don't realize it's mine. LOL

I do have some social anxiety's, The biggest one, like the above poster is as far as dating is concerned. I've pretty much resigned myself to just staying single, rather than actually get the courage to try and meet someone only for them to do a runner. I know the chances are if i met someone their reaction may not be to do a runner at all, but I can't see past that, or even how I would explain to someone that I have an ileostomy.

I'm quite surprised in that I actually haven't found myself excluding myself from going out with friends. Since i had my ileomstomy in july I've been on weekend trips away, doing the usual like going to the cinema etc. Whenever i do go anywhere however I always make sure I have supplies left in the car if im any considerable distance from home. But what has helped me is how supportive my friends have been, On a recent trip to london I had to share a room with a friend and he saw the bag, and wasn't shocked or repulsed by it, but more glad that it's made me better after seeing me in hospital for so long. And as far as the smell's concerned, I've always told my friends that if they think my stoma is kicking out a pong to just be honest and tell me rather than not say anything, so then I can then find ways of preventing it for times when I'm in other social situations where my friends aren't around to tell me. But upto now,either they are just lying through they're teeth, or I'm lucky and don't have an "aroma" other than when I'm emptying the bag in the toilet!..

My stoma very rarely makes noise, although I remember not long after coming out of hospital being at a funeral and worrying myself stupid about what I'd do if it started making a noise in a quiet church.., But thankfully nothing happened.

Most of my friends, that are really close to me know about the illeostomy, but then there are some that don't know - and other who I 'think' know but am not quite sure - so I don't ever say anything to them.

I've also at times find myself isolating myself from large groups when I can - my main thing is if I am somewhere where it's 'loud' noise around - no one will hear my stoma make noise and I'm good. If we are all just sitting around talking I'm always on guard praying my stoma keeps quiet and behaves. But like you, Martin, the friends that do know are so thankful I am alive, but they've seen me on my death bed so to speak, and are just thankful to God I'm alive.

I do go and travel a lot - that hasn't stopped me from enjoying the things I did before the stoma came.

But dating for me is something that really bothers me...and come to find out it bothers me more than it does/did the guy I was dating. I've read lots and lots of stories of single girls in the same situation I am in and who have boyfriends/husbands and so that gives me hope. And, at least from my past experiences the guys I've dated were ok with it and realized it saved my life. It didn't even gross them out, which I thought it would. They were expecting something worse.
So, I find that i am too hard on myself at times, but I'll be honest it really causes major anxiety with me -and after dating a few times it's always on my mind.

Just wanted to thank everyone for opening up and sharing their thought/fears/anxieties. It's helpful for us all to know that there are others out there feeling the same way!!!

I'm a big fan of "better living through chemicals" and would suggest for those of you that have social anxiety, perhaps to talk to a medical professional about an anti-anxiety med or anti-depressent (me? 20 mg of Celexa everyday, baby!) If meds are not your thing, then perhaps some one-on-one therapy as Entchen suggested, or a local support group to help build your courage in small social situations.

For the singles, like Dsny says above, I would guess you're more likely to be apprehensive about your stoma than a potenial mate. People can/will surprise you. You'll probably find someone to love you first, then love your stoma too!

I used to try to cover my bag when my husband and I were intimate, but he actually prefers if I am just naked. Doesn't bother him at all.

Janelle, you're not too far away from me there in Allentown!!!

As for bag smells, do you have a spouse or good friend that can tell you honestly if there is an odor issue? I have an ileo, and mine never smells. Trust me, my husband would let me know!!!

Hang in there and take it one step at a time!! - Amy