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Newbie introduction - Joining you from Austin, TX


elle d.
(@elledubuque)
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Joined: 2 days ago
Posts: 11
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Hello All,

So happy to have access to so many in the same boat! 

my journey started in March after a colonoscopy where they found a large mass in the lowest section of my colon. Before they even had biopsy results (which eventually did come back negative) they had me meeting with a surgeon as they were convinced by all the ways it looked it was cancer. After a MRI they said I had a T3 mass and I would need another biopsy because if they didn’t have tissue, insurance wouldn’t pay for the 5 weeks of continuous chemo and 30 min daily radiation they were prepping me for before surgery. Second Biopsy came back clean so they sent me straight to the OR. 

They were able to remove a large section of my colon and did find cancer indication in the mass in pathology. Luckily all 12 associated lymph nodes came back clear. Surgeon said consider the treatment done and 2-4 weeks of healing. I still need to meet an oncologist for continued monitoring. 

But it didn’t end there…. long story short, I ended up going home from the hospital never really feeling like myself. About ten days later I ended up getting a CT scan because I was running a fever and throwing up. The scan found there was an abscess on my surgery site. Waste and infection was trapped under an adhesion between my uterus and my colon surgery site and was slowly leaking into my body. I ended up in the ER that night for my second surgery in less than a month. the surgeon did prepare me for the colostomy I’d be waking up with as they could not risk any waste getting into my body while the surgery site heals. The hope is that it’s reversed in 5-6 months. 

Like all people here, it’s been a lot of ups and downs.

I’m still struggling to find the right appliances because my stoma is flat and I’ve been dealing with pancaking and leaking. 

I’ve lost 30 pounds and while I was a bit fluffy to begin with, it is weird to look in the mirror and not recognize myself. Most all of my clothes are either way too big or are extremely uncomfortable because my my tummy feels like a giant wad of exposed nerves. 

My emotions are all over the place from being ridiculously happy that my cancer was caught and moved to tears because my belly looks like I’ve been in a prison yard fight, covers with scars and an open wound that leaks poo. 

im determined to get my care and product needs figured out so I can get back to my life. I’m also looking forward to contributing here and benefitting from the wisdom of this group. 

😊

Elle D.


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VeganOstomy
(@veganostomy)
Admin
Joined: 8 years ago
Posts: 3603
 

Welcome, Elle!

Thank you for sharing. You've been through a lot in such a short time, and I'm glad that you've connected with all of us here. 

Feel free to post any questions you have as separate threads so we can help 😄

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


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SqueakyandLiza
(@squeakyandliza)
Registered
Joined: 3 years ago
Posts: 944
 

Welcome Elle, 

I’m sorry for everything. You have been through. I’ve been down the abscess path before (among others) and it wasn’t fun. That was in 2007 and now would be a red flag for Crohn’s, because I had a fistula too. But alas, the Crohn’s was not diagnosed until 2018, after my colon ruptured. 

You have come to the right place. The members here are so supportive and helpful, and have made a huge difference in my adjusting to this crazy ostomy life. 💕

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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sjlovestosing
(@sjlovestosing)
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Joined: 4 years ago
Posts: 651
 

Welcome Elle,

Sounds like you've been through the milk! You seem to have a positive attitude, despite your big tummy. That will go down in a few weeks, so be encouraged! Also, until your tummy reduces to it's permanent size, it will be challenging to find a barrier that works.

It's always a good idea to keep in touch with your stomach nurse. She is you best friend right now and can help you find just the barrier you need in the meantime.

Wishing you all the best and don't be a stranger.

God bless,

Stella

 


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LK
 LK
(@dlkfiretruck)
Registered
Joined: 5 years ago
Posts: 1208
 

elke d .... welcome to VO !! I know many here will agree that the connection to YOU, that you know in your head and what you see in the mirror are two different beings... actually 3 if you count your new little pal hanging out in front of you there.

I had the dickens of a time connecting that little pal & her apparatus to me & I had fair warning she was coming.  You may find giving a name to your new pal will help you connect to it.  Mine had several names before I accidently found VO & I confess,  some were just not nice...but they were creative!! Lololol.... so since I've been here at VO my stomas name is  "Rose"  because she really is a beautiful thing! A life saving thing & after reading forums here I learned to really appreciate my Rose. 

You have gone through so much & with the hope of a reversal in your future theres more to experience. I wish you all the best & no question is stupid question. You are amoung friends of a more personal kind here. I hope you have a great support system at home too, that can help a ton. 

Just a tip... don't toss your clothing that doesn't fit anymore just yet. My weight flip flopped the first 3 years then settled & I gave away clothing I wish I hadn't. Also try & find a person who does alterations,  they can take in outfits you love & its worth the minimal cost compared to new clothes.  Check with local dry cleaners as they sometimes know people who do alterations from home too. Best wishes!!  

Don't be a stranger! 

Linda

Linda


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elle d.
(@elledubuque)
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Joined: 2 days ago
Posts: 11
Topic starter  

Thanks for all the kind welcomes!

❤️


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