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(@willy)
Joined: 7 years ago
Posts: 15
Topic starter  

Hey folks. Just registered for access. Been reading for a while and watching Eric's videos for a long time. I'm a rectal cancer guy. Caught it soon enough that no spread to other organs but not soon enough to save my A** so to speak. Diagnosed when I was 53 and if I had been scoped like you should at 50 I would not have had this issue.  Colostomy for me. Oh well, hind sight... I'm 56 now almost 57 so I'm hanging in there. Many of you have far harder issues to deal with than I do so I admire your courage and toughness. So far my journey has not been that bad but I enjoy seeing others experience with new products and may like to give some of my input or ask some questions in the future. Wishing you all well!


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4213
 

Welcome to the forms, Willy! 

Thanks for sharing your story.

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Sarah Green
(@sarah-green)
Joined: 7 years ago
Posts: 77
 

One thing that I've learnt is that we all have different reasons for being here, all equally important. You sound like you have a great attitude and will be of great support to newbies starting out


   
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Illona
(@illona)
Joined: 7 years ago
Posts: 79
 

Hi Willy,

Welcome! Another newbie here.  Glad for your diagnosis.  I was diagnosed by fate.  I thought I was constipated, scheduled a colonoscopy, but had such stomach aches that I went to the ER and cancer was discovered.  I finished my first half of chemo, had a surgery and am ready to finish my last rounds of chemo so I can finally get back to work!

im trying to figure out how the stoma will cooperate in the office, especially with noises during meetings.  Ugh!


   
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(@larryc)
Joined: 7 years ago
Posts: 9
 

Hi Willy, and welcome. My story is very similar to yours, I received received radiation therapy 20 years ago to treat a totally different cancer. With this history every Doctor or nurse I speak to now seems to agree I should have been scoped at least every 3 years. Apparently my Doctor was un-aware of this fact because 7 years after my last scope and 10 months after my last physical my symptoms led to finally getting the scope and diagnosis of rectal cancer. I am one third of the way through chemo treatment, which hasn't too bad actually.  I must admit this new 'bag' reality is tough to accept and deal with. It's also going to be tough to 'forgive' my family Doctor.

WOW...I finally got that off my chest

thanx fot listening

Larry

 

   am having a tough time dealing with this new thing hanging off my stomach, and trying to forgive my idiot Doctor. Both still a work in progress.


   
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Dona
 Dona
(@dona)
Joined: 7 years ago
Posts: 832
 

It is astonishing that we do get  comfortable with  our 'postcolonial' selves. ( I have an illiostomy ...no colon anymore).

It does get easier. I try not to feel bad about the 'fix'. I am just a bit bummed out about getting the disease that got me here. ( Ulcerative colitis). The illness was so bad that I am quite happy about the repair.

Too bad you had an idiot doctor...they are out there. This is the place to vent and have people understand though. There is lots of good advise and lots of bad advise out there. I think Eric's site has been a huge help to many of us.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


   
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Dona
 Dona
(@dona)
Joined: 7 years ago
Posts: 832
 

and.. Welcome Willy. I love having more voices in our chorus and threads to our story.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


   
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(@sharon)
Joined: 7 years ago
Posts: 7
 

Hi everyone  I am also a newbie,  Had emergency surgery for a ruptured bowel back in March,   Have a ostemy still not used to it,  Dr   Appointment next month to discuss reversal,  I am not sure if I want to go thru that,   I had so much pain from the first surgery  but was told it shouldn't be this bad this time as I was full of infection and they had to really work to clean me out.  I am 77  years young.  and glad I found this forum.


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4213
 

Welcome, Sharon! I'm sorry that you've been going through so much. Emergency surgeries are extra difficult to adjust to, but I hope you find some comfort in knowing that you aren't going through this journey alone.

I hope your next appointment is positive. Please, feel free to ask questions on these forums through the various sections available. 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@sharon)
Joined: 7 years ago
Posts: 7
 

Thanks for the welcome  I sure needed a friend,  The home nurse I have isn't much of a help.  I need someone that understands and can answer questions..


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4213
 
Posted by: Sharon

 The home nurse I have isn't much of a help.  I need someone that understands and can answer questions..

Home care nurses can certainly be hit and miss when it comes to ostomy care and management, but I wonder if you can request to have them send a stoma nurse to your place. When I was receiving home care, I had access to two stoma nurses, but they had to be requested. 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Robert
(@njewell1)
Joined: 7 years ago
Posts: 700
 

Good Morning Everybody

I am new here joined 2 days ago after watching a lot of Eric's videos and others I had asked Eric a question and he invited me here so here I am . I was diagnosed with UC 9 years ago at the age of 50 have also had C-Diff 3 times in the first 6 years  . Lived with it while working for 6 years till just got to hard . Retired in 2014 and had my first surgery of a total colectomy in 2014 . Then in 2016 had 2nd surgery to have a permanent Ileostomy . September 19th will be one year so I'm still learning . So I am glad to join this forum and here all the stories and learn from everybody .

 

Proctectomy , Ileostomy , Ulcerative Colitis


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4213
 

Welcome, Robert! =) 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Robert
(@njewell1)
Joined: 7 years ago
Posts: 700
 

Thank You Bag Master . Glad to be here .

Proctectomy , Ileostomy , Ulcerative Colitis


   
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(@zvitusk)
Joined: 7 years ago
Posts: 396
 

Welcome. 

Talking things out is very beneficial. We all reach the " been there, done that "  point and are happy to help  and support those who are getting started or are having problems. 


   
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Robert
(@njewell1)
Joined: 7 years ago
Posts: 700
 

Thank you Zvitusk . You are right it is good to talk things out when you are not sure . I am sure I will have plenty of questions to be asking everybody . And I am looking forward to every body's experience .

Proctectomy , Ileostomy , Ulcerative Colitis


   
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(@sharon)
Joined: 7 years ago
Posts: 7
 

I had good news as of last Friday I have a new home care nurse,  she was here for 3 hrs,  ordered my supplys that I needed also gave me information on my ostomy,  learned more from her in that 3 hrs than I have from the other nurse  in 2 months.   She will be back every week to check on me.    YAH


   
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Robert
(@njewell1)
Joined: 7 years ago
Posts: 700
 

Welcome Sharon looks like we joined the same time . This forum has been very helpful to me already . I hope it will be for you also .

Proctectomy , Ileostomy , Ulcerative Colitis


   
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(@sharon)
Joined: 7 years ago
Posts: 7
 

Yes Robert I am new to the forum,  I had a ruptured bowel,  that is why the ostomy,   Where  are you?   I am in Northern Illinois, on the Wisconsin  line.

 


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 10 years ago
Posts: 4213
 
Posted by: Sharon

I had good news as of last Friday I have a new home care nurse,  she was here for 3 hrs,  ordered my supplys that I needed also gave me information on my ostomy,  learned more from her in that 3 hrs than I have from the other nurse  in 2 months.   She will be back every week to check on me.    YAH

Nice! Is the new nurse a stoma nurse or does she just have a lot of experience with caring for ostomates? It makes a huge difference to have someone who knows about specifics! 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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