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just saying hello and a big thank you :)  

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bonbon
(@bonbon)
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Joined: 8 months ago
Posts: 4
January 24, 2019 2:22 pm  

where to begin... dx with colorectal cancer in june 2018. months of radiation and chemo followed. surg to resect remaining tumor in mid nov 2018. went in with two possibilities on the table. either they would have enough material to simply reconnect, if not a permanent colostomy. the reconnect went well in the op room but upon testing it before closure found a tiny pinhole sized leak. so to allow time for this leak to heal i woke up with an iliostomy. totally mind blown and unprepared. not to mention drugged up and confused for days. i had done all my prep research on colostomy and had no idea how to deal with this high output iliostomy. it was scary to me.  discharged feom hospital on a friday ( always a terrible idea) and sent home with one ostomy bag and a sack of products no one had shown me how to use. had to call home health out for emergency visit the next day because i was leaking and had no bags left. shocked to find that absolutly no med supply carries them in our area. long story short they gave me a few bags and the basics. i blew through them at record speed due to leaks loterally minutes after application. enter the wonderful stoma nurse! he changed my whole life that day. gave me a convex system. explained why i needed it and why the other systems just fell off. he explained all the products. when and why to use them. he talked me off the ledge. i felt like i had emersed myself in a new language which gave me the ability to research on the internet and learn even more.  i have to add that i am a nurse. i thought nothing could really stump me that i couldnt figure out. but i work in primary care. no hands on experience with care of an ostomy.big learning experience for me to be on the patients end of this. im used to making a call and pulling strings and getting supplies or appts on demand for my patients. being on this end was an eye opener. patient advocacy in these situations is crucial and it is lacking in our area. something id love to get involved in changing when im back up and in the game again.  anyway, at this point im waiting on a scan to see if leak has closed. then surg to reconnect and see how that pans out. still possibility of permanent ostomy, then 4 months of “clean up” chemo. but now im not as afraid as i was of the possibility of a permanent colostomy.  so a big, big thank you for this site and your videos. they got me through some of the most didficult times in this journey. i really like that, as opposed to some of the other youtube sites for ostymates, yours is a broader focus. many are very geared to the diagnosis that lead to the ostomy and those are primarily UC or Chrones. i felt as though i diddnt belong there. so again, thank you for your reviews and tips. they have been a lifeline for me. 


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VeganOstomy
(@veganostomy)
Admin
Joined: 5 years ago
Posts: 2390
January 24, 2019 3:22 pm  

Welcome to the forums, bonbon!

Thank you so much for sharing your story! I'm really glad to hear that you had access to a stoma nurse to get you back on track. I think it's crutial that patients find a good stoma nurse, but not everyone has access.

Please feel free to ask more questions and explore the site and forum! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
(@john68)
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Joined: 2 years ago
Posts: 1339
January 24, 2019 5:12 pm  

Hi Bonbon, Welcome to the forum, The stoma nurse is a key part of being an ostomate, it’s a learning process and we always keep learning. I agree that passing any knowledge we have to help forms a chain of unity which is valuable 

ileostomy 31st August 1994 for Crohns


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zhtfreak
(@zhtfreak)
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Joined: 1 year ago
Posts: 32
January 26, 2019 7:43 am  

Hey there, 

 

Your post was interesting. I would sum it up with one of my favorite phrases. 

 

SOMEONE GETS IT! or something similar. 

 

I won't rehash my story here; you can read my intro post for that. I know what you mean though, when you can empathize with people in your situation it makes a world of difference. Interesting that they wouldn't show you how to use supplies before you went home. That would be incredibly stressful. I think this experience will make you better at what you do since you're a professional in that field. Just learning a little bit about something isn't even close to the same thing as actually living it. Good luck! 

BriKan


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Dona
 Dona
(@dona)
Registered
Joined: 2 years ago
Posts: 695
January 26, 2019 1:29 pm  

Welcome Bobbon,

It is wonderful that you have joined us and shared your story. I do hope when you recover that you may learn more about the whole Ostomy ball of confusion and share it with patients in need..Some of us were lucky enough to have had access to an ostomy nurse both before and after surgery. I had that and  home nursing to help me with it for three weeks after. Invaluable! I was scared to death and confused. That, and  with the ongoing help of VO have been a game changers for me.

I don't think any of us have ever had a medical professional who actually has any first hand experience of living with an ostomy, let alone coping with getting used to one.

Good luck in your recovery, and keep posting.

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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