How do people feel less isolated?

Hi,

Just wondering how people feel less isolated living with ostomies? I don't have a lot of friends, and the ones I do have are far away, some very, very far away. I'm on a very limited income, and so I only really have my mum close by. I don't own a car, although I can drive.

There's not really any support groups close by either. I don't really feel comfortable with work colleagues; we get on okay, but not really close enough to talk about things.

Physically, I've adapted to having the ileostomy. I very, very rarely get leaks, and changing the bag has become second nature, but the social side is just gone, and it's starting to really make me struggle. Most hobbies cost money in some form, either travel, etc., or tickets, and I just can't afford much on top of my expenses on my wage.

I get home from work, and then I'm just finding something to watch on Disney+ or scrolling endlessly through social media, watching the same old videos that get recycled to no end.

I thought about starting a local support group, but using venues usually costs money, and I just don't think I could get it funded. I'm a social person, and this quietness is deafening, if that makes sense.

Send help and hugs

Hey Tom..

Sounds like one of the stages we all go through initially with a stoma. Perfectly normal and in time changes if you don't allow your stoma to control your life.

I noticed you are hammering away with asks from topics you post. It's a good start.

You will get a following..

But please no pity parties, huh..

You are young, and new at this and just need direction.

There is another dating site for osties.. this one I saw a lot of people from England. I decided not to join that one.. but if you google you will find sites with folks with stomas nearby.

Never let your "handicap" control your life. It's easy to fall into that sort of thing.

There is always something going on, man.. be part of that.

Were you like this before your ostomy? Sounds to me that you're using your ostomy as an excuse. If you're used to it and not having issues, your isolation is by choice and not because you have an ostomy. To start, get off the couch and away from your mom and do things. There are a million things a person can do to be around people if they so choose.

I've had periods of isolation in the past. The way I got through them was to find activities I could do. The best low-cost option is to find volunteer opportunities. If you can't find a group, look for them individually. There are websites here with opportunities. Try organizations for causes you care about. I've recently been involved in things for colorectal cancer research and cancer research in general. But it could be anything: animals, children, the poor, the homeless. You name it, someone is probably trying to do something about it. And they always want help.

You get to help your community and meet people at the same time. Win-win.

Tom... would you say you are more the introvert type? If so, gotta fix that first, man.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

No, but before I became ill, I was in a different job that was better paid, trying to get a different job again that pays better, etc.

I had a car, which gives more freedom. I was also married until 3 years ago, now divorced, and that costs me enough each month.

I don't think I'd be so isolated if there was a group meeting in person, like once a week or something, just to socialize with others with ostomies. I mean, recovering alcoholics have plenty of meetings near me, but nothing for those that have stomas or other medical disabilities.

It's okay having you all to message on the forums 😊, but face-to-face interaction, there's nothing that beats it.

Like I'd say, if I had a little bit more expendable income, then I'd be off the couch in a shot, but unfortunately, I just don't have that luxury at the moment.

I've always been very outdoorsy, but going for a walk by myself isn't breaking that isolation and loneliness.

No, I've always been quite the extrovert; I've never had this problem before.

Can you volunteer with some organization close by? I don't know you or your living situation, but the joy of being a volunteer is giving and receiving.

Hey there, try finding a virtual ostomy support group; they have them online. I believe you can find out on the UOAA website. As far as hobbies and stuff to do goes, use your imagination. Color, draw, paint, find an old table and chairs, and repurpose them. Find something; use your imagination. There are tons of things you can do. And who cares what anyone thinks about you having an ostomy? If they don't like it, can they look the other way and mind their own business? You have to accept it first for yourself, and then you won't feel the way you do. But no one can do that part for you.

No problems; if anything, it's made me get out and live life even more. I had mine since I was 19, 55 now, just lived my life as anyone without a stoma does. No one I know gives a toss that I have a stoma, and if they did, that's their problem, not mine. I'm the luckiest man alive to have been given a chance to be given a second chance to live one life; live it!

First, you learn to live with a stoma; that's the easy part. The hard part is truly accepting it. You need to learn to look at your stoma and love it. Take yourself out of your comfort zone, walk in a pub, club, or coffee shop by yourself, sit near people, and start a conversation with them. You need to work on your self-confidence.

Life's what you make of it. You have been through health problems and maybe still have some, like a lot of us do. You came through surgery, so you're already a fighter and have proved you can do anything when you want. Now it's time to take another step forward.

Hi,

You should try the Ileostomy Association. They have support groups all over the UK that meet face to face on a regular basis.

IA's local groups are run by volunteers who themselves have undergone surgery and are living with an ileostomy or an internal pouch, or they know someone who has. Following surgery, many have a desire to give something back to assist others, given they have often been through a difficult journey themselves and understand how others will be feeling as they embark on theirs.

https://iasupport.org/

Hello,
Sorry to hear you're struggling. You're almost 40. Speaking from my experience, that's the age when most folks become increasingly busy with family, children, their careers, and aging parents.
Leaving little time to "hang out" with friends and acquaintances. So it gets harder to meet people.

I've had my colostomy a little over 2 years.
Showed it to any coworkers who wanted a peek... both male and female. No one thought it was gross. They were amazed I recovered and can live a normal life with it.
My wife doesn't care. She's happy I survived.

You mentioned you feel unattractive. I viewed the picture you posted of your bag. My ostomy looks exactly like yours... (I am older though). I've discovered, no one cares. I used to obsess about the lump sticking out of my shirt. I would point it out to people all the time when I talked with them. "Hi... that lump is my colostomy" and I would point at it. Everyone said they didn't really notice. So I stopped doing that. And soon, stopped obsessing over it.

You live in a city with a vibrant cultural scene. Lots of theaters, museums, and galleries, including the Crucible and Lyceum theatres. Maybe you could volunteer. You would meet people and expose yourself to new experiences. To meet folks and make connections... you gotta put yourself where the people are.

There are two leading universities in your city, attracting a large student population and contributing to a lively atmosphere. See if night classes or workshops are available. You'll meet fellow students and have something in common to talk about.

Your city is located on the edge of the Peak District. A great base for outdoor activities like hiking, cycling, and rock climbing. Your ostomy shouldn't limit you from physical activities. I ride my bike 20 miles, 3 times a week. I hike, travel, and swim. My ostomy stuff never comes off in water. I do wear a belt though.

Surfing on dating sites gets old quick. Put yourself out there where people are. Sitting at home staring at a computer screen or TV is not going to do you any good. Let people get to know you.

Keep us posted on your progress.

I agree with all the replies, particularly with the volunteering. Whether it's a charity or something else, having someone or something else to care about and think about (apart from yourself!) can make you feel less alone.

Making new friends doesn't have to be all about the ostomy. I personally prefer to meet people of all ages from all walks of life rather than focus on those who are similarly plumbed to myself.

Unless things are really weird over there, you don't need much money or any to join lots of social groups to be around others. Is it you want to be around other ostomates only? If so, that may be much more difficult in your certain area and under your certain circumstances right now. Join a gym, church group, walking club, etc. There are all kinds of things to do, but you've got to want to do it and kick yourself in the butt to go do whatever it is you like. Those who sit around and dwell on their health condition when their health condition isn't really the issue are just wasting time after giving a second chance at enjoying life. I'm not trying to single you out, but you've got to push yourself to improve yourself. You've gone through health issues, relationship issues, etc. Those are in the past now (yes, I know there are lingering things), brush yourself off and get on with getting on.

Volunteering has been the answer for me. It gets me out of myself and gives me a purpose.

G-Day MB,

If you were to go out for the day, I can promise you no one will know you have a stoma. So it's not the stoma that's stopping you; it's you. Instead of sitting in here hoping someone will just pop up and want to meet you, why don't you get off the couch and start looking for real flesh-and-blood ladies? Looking for sympathy on here will not attract anyone. Sorry, mate, just a bit of truth.

Regards IGGIE

Mr. Brightside,

May I make a very small and respectful suggestion?

I do understand how it is having limited resources, but resources are how we perceive ourselves to be too.

Perhaps, rather than finding something to watch on a screen, why not saunter outside on a fine day or evening and just be within nature? Your nearest green space initially, and just take in the feel of the air and listen to the rustle of leaves in the branches... you may begin to feel differently.

Try allowing your mind to shut off when in the outside air and 'allow' yourself to imagine you, warm, happy, and content in the moment.

I find the problem with watching something on screen is that it is a form of 'second-hand' living at times, in that it underlines all that I am not. By comparison, I prefer to focus on all the potential that I have and the 'little me' inside, rather than become overwhelmed with what 'others' do.

Also, give yourself a big hug!

You are alive and also working... so many opportunities.

Cease concerning yourself and just find time in the moment...

Please try this and let us know how you are with it.

TY.

Good luck.

~ ~ ~ ~ ~ Best wishes ~ ~ ~ ~ ~ ~

From the UK coast.

Very good. Living in the moment. I practice this all the time. I visited the Bolsa Chica wetland a couple of days ago. It can be walked in 45 minutes. I take 3 hours. I get next to mud flats.... pause. Notice the sea grasses gently swaying in the tidal flow. Birds probing the mud for a snack. A lizard sunning on a boulder. A sand shark swimming by. A small flower hidden in the brush. Terns cackling and diving in the water. The sun glinting through the clouds.

After 15 minutes, I move on to deeper waters. Where unseen fish stir the surface. Wind plays across the water. Egrets work the shore, hoping for a fish. Ants march around as a black beetle scurries away.

There's a lot to see... if you take the time to see it. Whether it's a park or a walk around the block.

Mr. Brightside. The choice is yours. Time is on your side.

.....

As BB describes, it's about fully engaging with the moment that one is in ..... hence his description of the observation ..... AND I might add, that having gone to this point - i.e., observing in detail one can take this to a greater level of involvement - i.e., 'feeling' that you are an actual part of the creature/action that you are intently observing - AT WHICH POINT one actually DOES [or has the potential] of being part of the happening in question - and when one does this the level of excitement/attunement, if you will, becomes all the greater.

There is far more to LIVING and being ENGAGED with life and life's occurrences - than passively observing.

DETAILED OBSERVING IS NECESSARY for the gateway to UNDERSTANDING.

An understanding is the threshold for engagement - and ENGAGEMENT IS PARAMOUNT FOR COMPLETE INVOLVEMENT in the MOMENT.

When involved in the moment and one is truly PRESENT - there is no future or no past, only WHAT IS.

You will know when you are IN the moment - as when we are actually fully engaged - there is nothing outside of the happening itself

There is no debate - you will know - the energetic aliveness takes on a different 'essence and luminosity' - very different from the mundane passive world.

FIRST STEP .... BEGIN TO BE CONSCIOUS OF RIGHT NOW - no monkey thoughts as to what 'was,' what 'will' be, etc -

BEING PRESENT HAS NO reflection, no expectation, and above all NO QUESTION - and NO DISTRACTION.

Hope this may help Mr. Brightside.

BW

~ ~ ~ ~ ~ Jayne ~ ~ ~ ~ ~

PS

Oh, and yes, sometimes we have needed to go through all sorts of 'stuff' before we are ready to 'engage' with the moment, and actually start living in the PRESENT ............ no shortcuts or second guesses ........... no buts, or "what ifs?"

Good luck - follow your own path - not that of others ....

Others may 'find' you.

J

The advice I have is to attend the UOAA Ostomy Conference. This year it's in Orlando, FL, in August. It's a game changer.

Haha, want to buy me the plane tickets for that? 😜 I'm in the UK. 🇬🇧

I've been looking out for social groups for Ostomates in my hometown, but it's been dormant since 2021… I've enquired with the charity that runs it, and they are looking to relaunch.

But for now, there is nothing local, and not having a car is a real thorn in my side (I would say pain in the ass, but that's what I had the surgery for. 🫣)

They have one you can attend and watch online. May I ask why you don't do research and look for stuff like that? You have the tools, and googling something and doing research isn't hard.

Two wheels are better than none. My friend.. 🚲 🏍 🛵

"Mornin Mr. B" (Hazel w/ Shirley Booth) Another déjà vu moment. Isolation is normal after our traumatic experiences. Your mind is more occupied with survival and coping day to day. TV and the web become your best friends and resources. I came home three months before Covid hit. We all were isolated for a long time. Support groups were not meeting. Luckily, I have a car, some money, and three good friends. Only one is nearby. They would come by weekly to check up on me, help out, and walk a bit. At 76, I outlived all my family and 80% of my old friends. After one year, I was hiking up to four miles flat. In three years, I hiked around the Continental Divide (look at my thumbnail) for a month, glamping. You need activities that will increase your core strength, improve your overall health, reduce isolation, and meet like-minded people—peers. I got my confidence back and went to Japan last fall. Have you considered a bicycle or motor scooter ($)? Biking or walking will introduce you to others. I was able to communicate with peers this way. Year six since surgery, and I have a group of seven friends that love hiking. We share experiences and lunch, too. I got invited to their homes for dinner. In 1998, I hiked around Beatrix Potter's Cottage and Hadrian's Wall. Loved it!

🔒 Login to see image

CA is very different from Iowa. No one wants to see or hear about my "Little Buddy." Not even my medical team or staff. The only one who saw it is my Ostomy RN. My Stealth belt got rid of the lump, but not my boobs. Thin, loose poly T-shirt.

🔒 Login to see image

Hi Tom,

I must admit I have felt like that a lot since my stoma became permanent. And even more so since I split up with my wife (divorce almost finalized :( )

I have a lot of online friends through various support groups. And I have been lucky enough to attend a couple of local get-togethers through the Ileostomy Association. Like you, I don't drive, so they have to be close to me to make it happen.

The main thing I would say is that you have recognized the problem and want to do something about it.

Hi dharms

Unfortunately, the one near me stopped since like 2021.

I have, however, contacted them, and they said they are looking to relaunch it. I'm looking at volunteering with them and might end up being the one running it. Not what I was really looking for, but I think trying to help others deal with having an ileostomy or J-pouch will, in return, help me.

So if it happens and anyone is ever passing near Sheffield, they would be welcome to pop in.

That's the ticket. No one wants to lead. But if you lead, others will be happy to join. And it will get you off the couch and out of the house.

I was divorced 3 years ago.

I didn't have much problem with UC until after we split. I had flare-ups before the relationship started, but it wasn't bad at all.

It really started badly after my ex-wife ended the marriage and effectively made me homeless. For about 3 months, I was living at my friend's house, miles away from my son. I think what really triggered the flare-up that lasted 6 months and 4 stone in weight was stress. It went beyond what mazalazine could help; they even tried efliximab, something they normally give cancer patients to suppress my immune system to stop it from attacking the tissue of my colon.

I now at least see my son regularly, but with him being so young, he doesn't really understand what an ileostomy is or why I have it. So he doesn't understand sometimes why I'm a little down or irritated.

The time I have with him is great, but I am really hoping to find a group where I can go and mix and just talk with people in similar situations as myself.

I hope your divorce is settled amicably and you can move on and concentrate on self-care, just as I'm trying to do.

I'm not a whiner, and I've never held much self-pity. I've always been able to just pick myself up and carry on, but I guess this has really been much harder on me mentally than it has physically. The physical hardness was UC, not the stoma; the stoma has given me most of my physical health back, which is why I'll never hate having it.

Now I just need to mend my mental well-being, but alas, there's no surgery for that.

I guess the elevator of success is broken; I'll just have to take the stairs, one step at a time.

Hi Tom

I understand what you mean. It can be hard adjusting to a new way of life. There's a little bit of grief in acknowledging that what was once normal to you is now a bit different. And yes, our bodies do change as we age anyway, but having an extra bag on top can make us feel a bit self-conscious. I'm only three months into my colostomy myself, and it does take courage to put yourself out there and do some things that you haven't done for a while.

Volunteering is a great way to meet others and to try doing some things that you haven't before. I love it and hope to try something new in a few weeks' time myself.

If you have a library close by, they often have free social programs and activities that can be fun to get involved in. My local one has a board game get-together day each week. I know it's not exactly what you're looking for, but maybe it's a start. And as you build courage to do some more things, it'll get easier. You could try going to a local church if that's something you might be interested in.

Whatever you choose to do, please know you are not alone! Let us know how you go with it ☺️

Sarah