I totally forgot how bad this hurts


I have always considered myself an overcomer.. But folks I almost want to throw in the towel. This go round I have been all alone. My family is in another town and u have zero support here. I was released from cox south today and no plac to go. The bed they had for me was mistakenly given away

Any ideas or any suggestions would be helpful. I seriously am at the end of my rope and scared of the outcome. Basically homeless and broke while trying to heal.

Sorry you are having so many problems. Have you let your doctor or ostomy nurse know about your pain? Maybe you can stay with family for awhile while you are healing.

Jmichaelw wrote: I have always considered myself an overcomer.. But folks I almost want to throw in the towel. This go round I have been all alone. My family is in another town and u have zero support here. I was r... |
Happened to me. I dont even have a stoma nurse, no support. Lost a lot of family to covid and other deaths...I have a mum....but she's no support. I was admitted for four weeks about 5 weeks ago.and sent home as he forgot about me wasn't there and they needed the bed and me?...I was from a different trust so out you go, type of thing 🙄....he's done this several times. Spend most my life in a ball or a local hospital who won't help as a different trust did it two years ago and they need to sort it. Well they just keep hanging up. It's so scary too I'm struggling to keep fighting . I really really am. I don't know what it is to laugh anymore. There's no joy in me. I'm ruining anyone around me too I think.
. I have s bag...but been left in a worse way. Booked for all large out. But he doesn't think it will take the pain and dibiltating symptoms away.....so I still feel absolutely screwed. So I know how you feel. I hope things pick up for you.

Wantstoliveagain wrote: Happened to me. I dont even have a stoma nurse, no support. Lost a lot of family to covid and other deaths...I have a mum....but she's no support. I was admitted for four weeks about 5 weeks ago.an... |
Geez, I hope things turn for the better for you also. Good luck.

I really wish I had the answers for you. I wish you all the best. Keep us updated, and don’t give up. There is beautiful in this mess. It may be hard to find, but it’s there. You have a great big family here too. ❤️

My heart goes out to both of you, jmichaelw and wantstoliveagain. ❤️ I am so sorry you are going through all that.

Wantstoliveagain wrote: Happened to me. I dont even have a stoma nurse, no support. Lost a lot of family to covid and other deaths...I have a mum....but she's no support. I was admitted for four weeks about 5 weeks ago.an... |
I feel for both you and jmichaelw, I really do. How good is your GP, are you able to get help from them? And what about the company that dispatches your stoma supplies? Coz they should have nurses you’re able to talk to over the phone. The suppliers speak with ostomates every single day, so maybe they can give you some advice about things? They’re in my experience really nice people to talk to just in general, as well as specifically for your stoma products. Also, hospitals here in the UK should have a PALS team - Patient Advice and Liaison Service. Are you able to talk to the PALS team at either your local trust of the other one where you got everything done about how you’re not being looked after properly? Coz your other trust should have referred you back to your local trust, but it seems from what you’ve said that either they didn’t do that or there was massive miscommunication. Feel free to DM me if you need to talk someone. Bit difficult for us to meet up in person coz I’m over in Hertfordshire, in the Watford area, but feel free to send me a DM.

Wantstoliveagain wrote: Happened to me. I dont even have a stoma nurse, no support. Lost a lot of family to covid and other deaths...I have a mum....but she's no support. I was admitted for four weeks about 5 weeks ago.an... |
I didn’t realize we were both in hospital at the same time! It takes a very strong person to raise a child while dealing with these awful body revolts, I truly hope it gets better for you!

Jmichaelw wrote: Any ideas or any suggestions would be helpful. I seriously am at the end of my rope and scared of the outcome. Basically homeless and broke while trying to heal. |
Maybe you could try contacting CCFA mid America or OACAC for help or guidance on heading in the right direction.
What you are going through sounds terrifying, quite honestly I would want to give up too.
CCFA phone numbers are (314) 863.4747
(800) 783.8006
OACAC phone number is (417) 862 - 4314
website is https://oac.ac
Those are where I would start if I was in your area.
For supplies I’d blast all the companies for samples to make sure you have some if you have an address for them to send them to. Most companies are really good about this.
That’s what I got for non governmental agencies that might be willing to help and guide you.
I know it doesn’t mean much but you very much have a supporter in Massachusetts that doesn’t want you to give up and wants only the best for you and a safe place to stay.
Abe/Paul
PS I’m seeing my stoma nurse later in the week, she works with a national foundation that distributes supplies to low income people, I give her all my unneeded supplies and they got straight to the foundation. I’ll ask her what the number is for their program in Springfield/ southern MO when I see her and post here that info

So sorry you guys are having such a hard time . Many of us who have families and friends we can turn to in a desperate situation . Family and friends who will put up with our medical issues or emotional issues even if they are often inconvenienced themselves. A loving and caring family can often be taken for granted by those of us who have the benefit of having such a family . There are people who for whatever reason do not have the unconditional love that a close family offers . When I start taking my Family's love and help for granted I kick myself in the ass and remind myself just how very lucky I am to have them . Friends come and go but family is forever .
Just hoping that you both get the support you need and deserve ...everyone in pain or distress deserves a helping hand .
All the best for the future . Magoo ☘

Meadow Snow wrote: I feel for both you and jmichaelw, I really do. How good is your GP, are you able to get help from them? And what about the company that dispatches your stoma supplies? Coz they should have nurses ... |
You are an awesome person and one of many reasons I like this site so much!
Members helping members for support and advice without judgement is so pleasant and refreshing. How wonderful to not have to dig through trolls to find helpful information and support.
That’s what in my opinion makes this site great, members from all over the world so you can get advice from someone in your own country is so helpful and also learning how things work in other countries and on other continents is very useful as well.
Ostomates helping ostomates makes my smile come out and that doesn’t happen often these days!
Abe/Paul

Abefroman1969 wrote: You are an awesome person and one of many reasons I like this site so much! |
Thank you Paul, and you’re another awesome person, you’re an absolute gem. All that info you were giving in your other comment for jmichaelw is just amazing, I always look forward to seeing what you have to say 💜💛.

Abefroman1969 wrote: I didn’t realize we were both in hospital at the same time! It takes a very strong person to raise a child while dealing with these awful body revolts, I truly hope it gets better for you! |
Yeah, I couldn’t imagine raising a child while going through everything that we do(and mine was easy compared to some of the things I’ve read on here). Anyone that can accomplish all that is way stronger than I. 🙇♂️🙂👍

Abefroman1969 wrote: I didn’t realize we were both in hospital at the same time! It takes a very strong person to raise a child while dealing with these awful body revolts, I truly hope it gets better for you! |
I have three. 17,15,14. 🤦🏼♀️💪🤣

AlexT wrote: Yeah, I couldn’t imagine raising a child while going through everything that we do(and mine was easy compared to some of the things I’ve read on here). Anyone that can accomplish all that is wa... |
Thank you. Although I feel I have failed them the most important years of their life. But they know I can be a fighter 😉💪🙏

Wantstoliveagain wrote: Thank you. Although I feel I have failed them the most important years of their life. But they know I can be a fighter 😉💪🙏 |
If you’re there in their lives and being positive, it’s never a fail. They know you’re sick or were. Smile, enjoy time spent with them and take it one day at a time.

I hate to even i.agine what would have happened to me without family help and support ....In San Francisco at the time , probably living under a bush !!! . There is usually some group , NGO etc , to turn to if desperate . Outside of the big Cities it must be very difficult to find the help you need as the aid agencies always have a presence in the Cities but are Bare Bones in most other areas .
Several times I thought ending things for good would be my best option ...and that was when I had lots of support . I stumbled through it and am very happy that I didn't give up . I once stood next to an unfortunate woman as she jumped off the Golden Gate Bridge ( my talking to her didn't work ) and this gave me a whole new view of " Ending it " . Never really considered it again after I watched her die in slow motion ....without even a scream from her . Hang in there . Wantstolive ... just look at and think about your children and the great job you did in raising them ...they are your life's work and they need you in their lives to fulfill their dreams . I thought that the pain , the surgeries and the deep sadness would never end ....but it did , eventually !! ☘👍🤗 Best wishes from Magoo 🙂

Jmichaelw wrote: Any ideas or any suggestions would be helpful. I seriously am at the end of my rope and scared of the outcome. Basically homeless and broke while trying to heal. |
I was in a similar situation after my surgery. I had just relocated from Michigan to Colorado. My friends that I was supposed to stay with informed me when I was in the hospital that I had to find a different place to live. I ended up renting a room out from a friends mom. So, I would say do some digging online if you can. Sometimes people have extra rooms like that that are not being used. Maybe find some local buy/sell groups online. And search for “rooms” or rentals. It was so traumatic for me as part of my whole surgery experience, to be alone in a new state with little support.

Jmichaelw I saw my stoma nurse and completely forgot to ask the name of the group she works with, I apologize. I will attempt to contact her today and see if I can get the name of the group she works with, I just gave her a bunch of supplies yesterday to forward along to those in need.
Please confirm you are in southern MO. So I’m not asking for help in the wrong area to be helpful to you.
My bad and I’ll try and fix it today.

Wantstoliveagain wrote: I have three. 17,15,14. 🤦🏼♀️💪🤣 |
I can just barely take care of myself, you must be a very strong person to be able to raise three TEENAGERS and try to take care of yourself as well.
My hat is off to you!
Hats off to all the men and women who are raising kids throughout their Illness, I can just barely walk to the neighbors house!

I can't imagine having gone through this process without support and my heart goes out to both of you. Wantstoliveagain, you should know that, while you may not have been able to physically and emotionally be there for your kids completely, you modeled how to muddle through adversity and gave them a chance to be there for you. Those are both good things. Jmichaelw, I have some extra supplies, Hollister one-piece flat cut-to-fit bags and Hollister Adapt or Safe 'n Simple barrier rings. I'd be more than happy to send them to you if you'd like. Local hospitals may have supplies to give you, too. ~Lori
*my message may appear twice - the first didn't post😕