Meet & talk to fellow OstoMates Support | Friendship | Relationships

Several years later and hate it more.

Sun Sep 19, 2021 8:43 am
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I've had my ileostomy since 2016 (UC). Aside from pretty much losing everything since, not all necessary due to my ostomy, I've only grown to hate my ostomy more over the years. I am well aware it saved my life, nonetheless, I still hate it. I work a retail job making far less then I was making years ago. I have to wear a hernia support belt almost all of the time except at home. Not even taking into account the inconvenience of putting it on before I want to do anything and the inconvenience of using the bathroom, but the belt is just physically uncomfortable. I walk daily, but the belt makes this simple task uncomfortable. Obviously, this brings judgment from the opposite sex, which you will say is their problem. But if I can't meet people, it's also my problem. I've been divorced for 3 yrs and have met no one. I do online dating sites and when they find out about my ostomy they disappear, only want to be friends or I get pity. I'm divorced, moved back home because I can't work full time and was denied disability ( prior had a liver transplant, I have osteoarthritis and joint issues and depression and anxiety ). And I'm uncomfortable everyday.  Sorry for the long post/rant. Maybe I just seem ungrateful, I don't know. I just hate the preparation and effort that is needed just to simply leave the house. Don't even know if I want support or if I just needed to vent. Does anyone else feel like this years later? 

These are the top 5 issues ostomates face:

1. Dating and relationships
2. Concealing the pouch
3. Foods to eat and avoid
4. Losing or gaining weight
5. Pouch ballooning

Check out this video from MeetAnOstoMate.
Past Member
Sun Sep 19, 2021 9:02 am

I am new to mine and can't fathom having it for years to come. I have 2 primary cancers and it is tasking to take care of. Your feelings are relatable. 

Past Member
Sun Sep 19, 2021 9:43 am

Wish there was a quick fix but there isn't one some people get used to there ostomys quite quick others take time and some never can accept them. I think having depression & aniexty wont be making it any easier for you.

I do know someone that took almost 30 years to accept there's now any chance they get there on the beach in a bikini. 

I've had my ileo over 30 years never found dating a problem myself if anything seems to attract women more when they know I have a bag, hopefully not out of pitty if I thought it was that for a second it would be over, in my younger days there may have been a few occasions when I didn't have time to time to say I had an ostomy lol but it wasn't a problem for them. 

We all have our own experinces in the dating game.

Sun Sep 19, 2021 10:12 am

Sounds like you are having a really tough time. Please consider getting therapy. Why do you wear a hernia belt all the time? Do you have a hernia?

it is hard living with a ostomy.. when you are dating there is no need to tell someone about your Ostomy or medical history unless the dating becomes more serious.. dating should be a fun activity meeting a friend partner. I have dated a lot and never tell until we move into a more serious direction . Learn to find joy in life and focus on things you can do with success, in work and play. Take it one day at a time .. life is challenging. !! Read and learn from this group.

If you pain level is high please contact you Doctor about a pain management program..a daily high level of pain does cause depression and anxiety. If you do not have a hernia do not wear the belt ..or use it if you are doing heavy lifting.



Last edited by Maried on Sun Sep 19, 2021 2:09 pm; edited 2 times in total
Sun Sep 19, 2021 1:40 pm

Hello Bukowski.
Thank you for sharing your feelings in such an honest way. If it is difficult for you to fathom out whether this is a rant/vent or not, then it is impossible for us, as the identification of your motivation for writing must be your own. If it is a rant, then I am glad that you chose MAO as a forum in which to share because we like to think that we can encourage people to rant and vent as much as they feel necessary. This in itself, is often a useful exercise of cathartic expression, and can be ‘therapeutic’, – much like my own rhyming verse.
Besides that; There is no good reason why any one person should not still hate the fact of and the experiences of having a stoma, with all the potential complications that accompany it. Personally, I don’t ‘like’ having a stoma, even though I elected to have the procedure after a long internal debate about the pros and cons. On balance, the stoma was the best option.
Most of the time, I muddle along without complaining too much, largely, because not many other people listen if I do, and I certainly don’t want to listen to me grumbling about it. ( by that remark you will have gathered that i talk to myself a lot !) Anyway, I have found that there are many more important things to vent and rant about than my own physical problems .
I wrote my book of rhymes about ‘My Ostomy World’(which was my way of ranting) and, apart from the odd relapse into rhyming verse on this subject, I have found lots of other things to focus attention on.
Seriously, I do find that ‘distractions’ are a good way of not thinking and focussing on those things in my own ‘small-life-world’ that piss me off. It is so much more fun to identify and write about the major issues of the day. This way ‘time’ is quickly used up, and I have little of it left to ponder on my own situation to any great degree. If I did have that luxury of ‘time on my hands’, I have an instinctive feeling that I might join you in being depressed.

Best wishes
Bill

A RANT.

I’ll share what rant’s are all about
they’re there to let the venom out.
Keep poisons in and they will grow
give voice to them and they will go.

If I can have a rant I find
it clears the rancour from my mind.
It’s relaxation for the wise
and satisfaction is the prize.

So if I rant and fume it might
rid me of my gloom and spite.
As I unwind there’s some release
and in my mind I find some peace.

May all the malice that’s in there
stay in the chalice that we share.
Then when the rant is over we
can then decant and feel we’re free.

I can recall distain and hate
when I became an ostomate
and pent up animosity
that went towards my ostomy.

The rant’s I had were functional
if not a tad compunctional.
At that time I’d seethe and shout
to vent my pent-up feelings out.

A rant decants some enmity
nastiness and hostility.
But what I learned from my blue rage
was I could turn to a new page.

So there are ways rants can be good
as I always knew they could.
I must be hopeful you can see
just how useful rants can be.

                              B. Withers 2013

Sun Sep 19, 2021 4:40 pm

Congratulations “bukowski" on your courageous, brutally honest post.

There would be plenty of ostomates on this site and elsewhere who feel the same way you do but aren’t brave enough to say so publicly.

Whether we like it or not, this is the real world.

Like you, I have a process I go through to look my best every day.

I have "mask” to "mask” interaction with the public daily, and no-one has a clue what’s under my clothes.

I wish I had some profound words of wisdom for you but I haven’t.

There is no easy answer to our “additions” which come with the issues you write about.

Keep your head up if you can.

I wish you all best.

V.J.😷

P.S. As for the opposite sex, until you get dumped by a fellow ostomate, you really haven’t fully understood the true meaning of rejection.

Sun Sep 19, 2021 8:49 pm


Bill wrote:

Hello Bukowski.
Thank you for sharing your feelings in such an honest way. If it is difficult for you to fathom out whether this is a rant/vent or not, then it is impossible for us, as the identification of your motivation for writing must be your own. If it is a rant, then I am glad that you chose MAO as a forum in which to share because we like to think that we can encourage people to rant and vent as much as they feel necessary. This in itself, is often a useful exercise of cathartic expression, and can be ‘therapeutic’, – much like my own rhyming verse.
Besides that; There is no good reason why any one person should not still hate the fact of and the experiences of having a stoma, with all the potential complications that accompany it. Personally, I don’t ‘like’ having a stoma, even though I elected to have the procedure after a long internal debate about the pros and cons. On balance, the stoma was the best option.
Most of the time, I muddle along without complaining too much, largely, because not many other people listen if I do, and I certainly don’t want to listen to me grumbling about it. ( by that remark you will have gathered that i talk to myself a lot !) Anyway, I have found that there are many more important things to vent and rant about than my own physical problems .
I wrote my book of rhymes about ‘My Ostomy World’(which was my way of ranting) and, apart from the odd relapse into rhyming verse on this subject, I have found lots of other things to focus attention on.
Seriously, I do find that ‘distractions’ are a good way of not thinking and focussing on those things in my own ‘small-life-world’ that piss me off. It is so much more fun to identify and write about the major issues of the day. This way ‘time’ is quickly used up, and I have little of it left to ponder on my own situation to any great degree. If I did have that luxury of ‘time on my hands’, I have an instinctive feeling that I might join you in being depressed.

Best wishes
Bill

A RANT.

I’ll share what rant’s are all about
they’re there to let the venom out.
Keep poisons in and they will grow
give voice to them and they will go.

If I can have a rant I find
it clears the rancour from my mind.
It’s relaxation for the wise
and satisfaction is the prize.

So if I rant and fume it might
rid me of my gloom and spite.
As I unwind there’s some release
and in my mind I find some peace.

May all the malice that’s in there
stay in the chalice that we share.
Then when the rant is over we
can then decant and feel we’re free.

I can recall distain and hate
when I became an ostomate
and pent up animosity
that went towards my ostomy.

The rant’s I had were functional
if not a tad compunctional.
At that time I’d seethe and shout
to vent my pent-up feelings out.

A rant decants some enmity
nastiness and hostility.
But what I learned from my blue rage
was I could turn to a new page.

So there are ways rants can be good
as I always knew they could.
I must be hopeful you can see
just how useful rants can be.

                              B. Withers 2013

Always on point in an entertaining way!

E& I

Sun Sep 19, 2021 9:14 pm

Hello bukowski¡

I'm glad you came to this site and shared your feelings. I could hear your unhappiness in your words.

I can't help but wonder what your life was like before your ostomy was necessary.

As far back as I can remember I've had challenges and obstacles. Not allowing anything to to dictate my happiness or my value as a person or how I felt about myself became a way of life. I don't mean that I pretended to get it together¡ I really got it together and felt really good about myself.

If your ostomy is permanent you have to find it within yourself to accept it. Seek professional help if that's what you need to do.

Forget your old way of doing things and figure out what your new life is going to be. Choose happiness and enjoy your life. Surely there's something that you still enjoy! Start with that and build on it.

Keep us informed of how you're doing!

Focus on the things you enjoy!

Jo

Fri Sep 24, 2021 9:28 am

Hi buwowski

I think if you asked the majority of the members on here if they are brutally honest with themselves nobody likes the stoma but for one reason or another it's either been done to save a person's life or to alleviate other medical issues. People learn to accept and adjust to the life changing stoma, you need help and support from a professional point to help you overcome some of the problems you are facing. Xx

Fri Sep 24, 2021 10:46 pm


Anonymous wrote:

Wish there was a quick fix but there isn't one some people get used to there ostomys quite quick others take time and some never can accept them. I think having depression & aniexty wont be making it any easier for you.

I do know someone that took almost 30 years to accept there's now any chance they get there on the beach in a bikini. 

I've had my ileo over 30 years never found dating a problem myself if anything seems to attract women more when they know I have a bag, hopefully not out of pitty if I thought it was that for a second it would be over, in my younger days there may have been a few occasions when I didn't have time to time to say I had an ostomy lol but it wasn't a problem for them. 

We all have our own experinces in the dating game.

Dating, it's all in your attitude.  Don't start off saying you have diabetes.  Do you?

Mon Sep 27, 2021 10:11 pm

Yes, the bag gave me my life back. But it couldn't return me to pre-Crohns. Today was a truly sucky day after a rough week. I had those thoughts of why do I bother? I should just stop seeing the doctors who don't give a shit. I called my GI & PCP many unsavory words today. Of course I was driving, so they didn't hear me. 

Vent away. Find someone to shoot with a paintball. Get up tomorrow and try again. 

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