How to cope with ostomy anxiety?

[nogutsnoglory]

I'm curious to hear from some veterans on how you cope with the realistic fears that are presented with a bag.

-I am constantly checking and emptying my bag day and night for fear of leakage or popping.

-I am afraid ill be out somewhere and the bag will leak or the whole device will fall off.

Its hard enough to change and clean the device at home I can't imagine it in public even with supplies on hand.

 

[DJW]

Hi NGNG. In a word...time. As I got more comfortable with it the anxiety started to go. But every time I have surgery there is an adjustment period. Once I come to a point where I'm changing on my terms and not because of a leak, I'm able to relax. Surgery last summer took until December before I felt comfortable again. Once again I'm in the no anxiety situation. I'm more worried about places with no facilities or lousy ones (then again I can empty standing up if needed). That's some nice freedom.

 

[nogutsnoglory]

Do you always carry supplies when out just in case? I am just having these horrible visions of being out somewhere and the bag falls and my stoma becomes a poop volcano messing me up and the floor everywhere. Omg that would be so horrible.

 

[DJW]

I do if I'm out for a while. But your stoma will also settle down over time. You'll know what goes through you like a train. I know how many times a day I empty. I have a good idea when I'll be emptying based on when I eat. It's not science but I have an idea. I have been doing this for 28 years. I'm pretty good at changing when there is less activity. I've also become pretty darn good at it. Quick and simple with a very good seal. No anxiety.

 

[PsychoJane]

I share the same feeling about it as DJW. Time will allow you to not feel anxious about stoma related situation. That and facing situation you are fearing (once you have gain a certain confidence with the bag).

My advice are not to be followed but to give you an idea, I am confident enough about my appliance that for my 2 week hiking trip, I brought 2 flanges and that's it. I could have been in trouble but things go well enough on daily manner that I did not feel the need to bring more.

Usually, I think I have a bag and a precut flange either in my backpack or my purse but really, I'm not really verifying that. I had to improvise a few times in my life due to this but it's been only a few times in many years. Duct tape can do impressive things when needed (comfort not included).

On the long term, once your terminal ileum or last part of your ileum will build up some sort of water absorption abilities, you will be able to figure out the appliance that suits you the best. I would not settle for an appliance as long as you can't reach a minimum of 4-5 days out of it (I can reach 7-9 with mine but 7 is way enough so I change weekly). Many factors come in line, the stoma type, the daily activities, food eaten, sleeping position, but in general, it should be possible to keep it as long as that. Then, as DJW said, you come to know what gets in and out in how long pretty well. Just as much as you will be able to tell if you have a blockage or diarrhea :S....

Hang on! Things will get smoother!

 

[nogutsnoglory]

Thank you so much guys. I can see how once things stabilize you are in touch with your body and get a better sense of schedule and how things work.

The duct tape is a fantastic idea in an emergency because you can easily purchase that if near stores. Sounds uncomfortable but it could save a disaster for a few hours.

 

[Dukeis]

I agree with DJW time. When I first got mine about 6 months ago I couldn't imagine how I would take care of it myself. Now I go anywhere and don't really worry about. I do carry a messenger bag with a complete change of clothes and all the supplies I need to change where ever I go.

Now the duct tape is very interesting, never thought of that one in a pinch.

 

[2thFairy]

I used to have panic attacks when it was time to do a bag change--hyperventilate, major sweats, the whole bit. It truly becomes no big deal faster than you would think right now.

I do carry supplies and a change of clothes with me if I'm going far from home or know I will be in a situation where I can't get home quickly such as work or school. I'm still new to the game (1-1/2 years), but I haven't had to use my emergency supplies yet.

 

[nogutsnoglory]

You poor thing 2thfairy! I am sure overtime seeing that the worst didn't happen eased your anxiety. I suppose even the worst case scenario as disgusting and humiliating as it may be will not be the end of the world. You just figure out some way to get by and even if it means plastic bags and a roll of paper towels as you rush home. That would be an awful worst case or just a leaking stoma into your clothes till you got home.

 

[Misty-Eyed]

Confidence comes with time I think.... the longer you go without a leak etc, the better it gets. If I have a few leaks in a shorter period of time then it gets me down a little, but then I go longer again and forget about it.

 

[Ginger is her name]

I always carry supplies with me...I'm pretty new to this too! Its only been 7 months! I have has a few times that I had a leak at work. I found that wearing an undershirt/tank top under my clothes is a huge help! That way if it gets dirty, I can just take that off and not have to change everything!

When I first started going out, I was so nervous...I constantly checked myself for leaks...fortunately, we've been good for a while! When it does happen, I just explain that Ginger is having a temper tantrum!

 

[nogutsnoglory]

Ginger I'm always checking it too. I'm starting to go nuts and feel warm liquid dripping down my sides even when it's not leaking.

 

[fozheart]

I was ridiculous sometimes...if I had plans to go somewhere, I would not eat beforehand, thinking that then I would not have to worry about the bag. (dumb!) I did have a nice little take along kit with case that one of the ostomy supply companies sent me. Most product companies have a number that you can call for help or questions. Talking to them lessened my fears of having a disaster with the bag, and they also were very generous in sending different types of bags, barriers, etc. as free samples. I think you will get more confident with time. Good luck!

 

[nogutsnoglory]

It's so annoying every other minute I feel warm dripping liquid and I freak but nothing is there. The problem is it feels exactly like it does when it leaks and it leaks every other day and I am changing so I'm going nuts. I need to just stop checking and trust that ill know if I'm really leaking by the mess. Ugh hate this

 

[PsychoJane]

Do you wear a bag cover? I think it could be helpful for you to prevent the "hot feeling" of the output moving in the bag when it reach out maybe? It is just an idea I'm having as I know I was freaking out at some point in my vacation. I caught the traveler diarrhea and I still wanted to swim but since my bowel were inflamed and well.... when you get that bug anything you ingest rush through you at the speed of light. I would get a warning cramp and then it would almost fill my bag half a cup in 2 second after the cramp. The feeling of warmth and the quick spread in the bag were making me feel like it was leaking but it never was. So maybe that could be beneficial to try padding something between the bag and your abs skin to prevent that sensation?

 

[DJW]

Hi NGNG. You're in a tough place. We're here for you. Hang in there, it gets better.

 

[nogutsnoglory]

I'm going to purchase one psychojane. Thanks DJW.

 

[annawato]

With time you do get in tune with your stoma. Always carry a spare kit and spare clothes. make sure your kit has everything you need including wet wipes. I even carry some toilet paper as I find the stuff in public toilets usually disintegrates as soon as you try to wipe any mess up. I also always use the disabled toilet as there is more room and they are (sometimes) cleaner.
You definitely get less leaks as time goes on but it helps anxiety if you are prepared.
You can get waistbands too, they may help you feel more secure.
i must admit I have had leaks at the worst possible times. But I survived and so will you in the event that happens. Chances are it wont though, especially once you find a bag and system that works for you. If you are having lots of leaks maybe trying a different type of bag would help?