Hating my ostomy years later - seeking support

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 than 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 years 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 every day. 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?

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.

Wish there was a quick fix but there isn't one. Some people get used to their ostomies quite quickly, others take time, and some never can accept them. I think having depression and anxiety won't be making it any easier for you.

I do know someone that took almost 30 years to accept theirs. Now, any chance they get, they're on the beach in a bikini.

I've had my ileo for over 30 years. I never found dating a problem myself. If anything, it seems to attract women more when they know I have a bag. Hopefully not out of pity. 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 say I had an ostomy. Lol, but it wasn't a problem for them.

We all have our own experiences in the dating game.

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 an 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 or 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 your pain level is high, please contact your 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.

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

How to Stay Hydrated with an Ostomy with Collin | Hollister

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 "addictions" which come with the issues you write about.

Keep your head up if you can.

I wish you all the 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.

Always on point in an entertaining way!

E I

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 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

Hi Bukowski

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

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

Yes, the bag gave me my life back. But it couldn't return me to pre-Crohn's. 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 and 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.

Hey Bukowski. It appears we have a lot of similarities. I too have an ileostomy, hate it, have to wear an uncomfortable hernia belt all the time (even to bed), have anxiety and PTSD, am insecure about dating with an ileostomy, am an introvert, love photography and music, and can't do as much as I'd like because of the 'bag'. You should private message me.

Good luck to you both. Hopefully, you can offer support, tips, etc. between you. XX

I understand just how you feel. I have an ostomy and hate it more every day! The saddest part is I meet people and just like those you met, they find reasons I'm not the one for them. Hopefully things get better for us all!

“Go All the Way” by Charles Bukowski. One of the main sources of hope that got me through the worst of it. Still using it now. I read your post and relate exactly to what you wrote. Anxiety and depression are still a battle to fight every day. I feel like a social pariah. Are you a candidate for a j-pouch?

I feel the same way! Good to know I'm not alone. I don't have all the extra items; mine is Crohn's and fibro too, but I have not met anyone who can relate or doesn't get grossed out by bathroom issues. Would love to chat more with you.

Hang in there, and I will too!

Cheryl