Overcoming Social Anxiety with an Ileostomy - Seeking Advice

I've had my ileostomy for 13 years. I have been afraid to go out and do anything and basically became a recluse. I am single, but I don't feel like there's any woman who loves me, and it makes it hard to continue on. I just want to know how you got out of being afraid of going anywhere and making a mess all over the place if you have bad leaks. I'm just scared. I'm just very scared. Thanks.

Hkibler, I'm sorry your fears have affected you for so long. We've all had leaks, but we've also gotten good at preventing them before they get worse, bringing an extra bag and ring with us, being aware of the sensations of the beginnings of a leak, like cool wetness, skin irritation, etc., and nipping everything in the bud. Once you get a chance to do that, you get a sense of accomplishment and control over your fears. With anxiety, it helps to ask, “What's the worst that can happen?” and then have a plan for dealing with what might come along. I hope this helps you to move past this.

Sounds like you have/had depression/anxiety. From you just asking, that says to me you're ready in your own mind to start fighting to get your life back. Take small steps to start with to build your confidence up. Just short trips out for a walk, then if you have any family/friends nearby, meet up for a coffee and go from there. Further distances, days out at local attractions.

I'm so sorry you are so frightened. Maybe consider a therapist and even an antidepressant which would help your depression and anxiety. Is there a local ostomy support group in your area? That may be a good thing to start because all of us have had leaks and if you are out with other ostomates there shouldn't be any worry about embarrassment since we've all had incidents. Have you had a lot of leaks?

As far as someone to love you… learn to love yourself and life again and the right person will eventually come into your life. She can't find you if you're holed up in the house all of the time!

Like others have said, know the signs of a leak; feeling moisture, odor, etc., and always have an extra supply with you so you can deal with it before it becomes a disaster.

Take care!

Like the song goes... you put one foot in front of the other and soon you'll be walking out the door. I can't understand why people think that going out of their comfort zone will result in a disastrous explosion of fecal matter or there will be a thundering nonstop roar constantly making people look at you.

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Sometimes we have to hit rock bottom before we can make a change. It seems you have hit rock bottom and decided to reach out for help. In the 13 years since you got your ileostomy, many new appliances and accessories have been developed to manage ostomies. Develop a plan, start with Coloplast, ConvaTec, and Hollister. Reach out to each one and let them know you are trying to find an appliance and/or accessories that will help you prevent leaks. Tell them you want to try:

1) Flat as well as convex wafers. For ConvaTec and Hollister, you will also want to try their moldable wafers.

2) Request barrier rings.

3) Request adhesive removal wipes.

4) Request barrier prep wipes.

5) Request odor eliminator sample packets.

6) Request barrier extenders.

7) From Hollister, you can request an ostomy belt.

This will give you a good start and try it all out! While trying the different products, you will begin to better understand your ostomy. You will likely find that there are some products that you like from one manufacturer and other products you prefer to get from a different manufacturer. When requesting the products, the companies will typically want to know what type of ostomy you have, where the ostomy is located, how long you have had the ostomy, what the size of your stoma is, and what the height of your stoma is.

The above things are geared towards your physical needs. Although once you have a handle on the physical aspects of managing your stoma, they also provide some help with your mental weaknesses. Unfortunately, they don't fully address your fear/inhibition/anxiety about seeking out a love mate. For that, it could be helpful to talk to a psychiatrist for counseling and perhaps a prescription for anti-anxiety medication — don't let your hangups get in the way of seeking professional help. You have tried it your way for 13 years and it hasn't worked. Move away from that stasis and begin to live.

Welcome Hkibler!

Congratulations! You've taken one of the first steps to break out of your self-imposed isolation.

You've also received a lot of good advice here in terms of avoiding leaks and perhaps finding professional support for your social anxiety.

But you also seem to consider yourself unlovable because of your ostomy. I think we all go through major self-image adjustments when we live with an ostomy. We look at ourselves naked, with a bag hanging off of us, like some unwanted appendage, and we may say, "I wonder what I'd look like without it," or "This bag makes me unattractive."

Well, you must fight that negative internal dialogue with everything you've got! As mentioned, take baby steps, and give yourself a pat on the back each time you overcome another hurdle of anxiety. Obviously, you want to change or you wouldn't be reaching out to us like you just did. Congratulations on that! See what a positive response you've already gotten?

I encourage you to open up a little further and share with us anything you feel comfortable with. We're not going anywhere, and we sincerely care about you.

Looking forward to hearing more from you on the forum! Take care!

M

xo