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Just released from hospital today. Yet another revision. I forgot just how painful this is.. Omg

Sun Jun 05, 2022 10:06 pm
"This is the best website for people with an Ostomy, hands down. So much understanding. Everyone should join."

I totally forgot how bad this hurts 

Sun Jun 05, 2022 10:09 pm

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 

MeetAnOstoMate - 26,891 members
Sun Jun 05, 2022 10:11 pm

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. 

Mon Jun 06, 2022 12:17 am

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. 

Mon Jun 06, 2022 12:17 am

Can’t you stay with family?

Mon Jun 06, 2022 12:52 am


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. 

Mon Jun 06, 2022 1:40 am


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. 

Mon Jun 06, 2022 1:49 am

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. ❤️

Mon Jun 06, 2022 3:20 am

Sorry to hear your going thru this I will be praying for you!

cplumber

Mon Jun 06, 2022 4:50 am

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

Mon Jun 06, 2022 5:07 am


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. 

Mon Jun 06, 2022 5:56 am


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!

Mon Jun 06, 2022 6:09 am


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



Last edited by Abefroman1969 on Mon Jun 06, 2022 6:25 am; edited 1 time in total
Mon Jun 06, 2022 6:09 am

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 ☘

Mon Jun 06, 2022 6:18 am


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

Mon Jun 06, 2022 7:55 am


Abefroman1969 wrote:

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 hav...

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 💜💛. 

Mon Jun 06, 2022 1:14 pm


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. 🙇‍♂️🙂👍

Thu Jun 09, 2022 1:41 pm


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. 🤦🏼‍♀️💪🤣

Thu Jun 09, 2022 1:43 pm


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 😉💪🙏

Thu Jun 09, 2022 1:52 pm


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. 

Thu Jun 09, 2022 4:48 pm

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 🙂

Fri Jun 10, 2022 6:22 am


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. 

Fri Jun 10, 2022 6:38 am

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.

Fri Jun 10, 2022 6:43 am


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! 

Sat Jun 25, 2022 9:04 am

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

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