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Kae
 Kae
(@kae)
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Posts: 56
May 1, 2017 4:52 pm  

I've been a member here for a few weeks but am shy about doing introductions. Anyway, here it goes. I'm Kae (Kay) and I am an Ostomate. Unlike many of you, I did not have Crohn's, UC, IBD, or even IBS. I had no idea that I had Diverticulitis until it decided to rupture in a spectacular way and I ended up in the most pain I have ever been in, and took a trip to the ER (seriously folks, I'd have a baby any day rather than have that pain again). 

There were two attempts to repair the rupture through laparoscopic surgery but neither were successful. I suppose that was a good thing because when they opened me up, they found that the peritonitis was more extensive than they had imagined. The surgery ended up taking much longer than anticipated for them to clean out the abscesses and infection. 

I am not a good patient and the hospital stay and procedures prior to the final surgery, as well as the final surgery itself where.... horrible. I do not remember the first surgery or prep at all as they knocked me out in the ER before really prepping. Probably because I was in so much pain that I was shaking hard enough to rattle the bed and their machines about. The final surgery I had trouble with getting the Epidural and found that process to be bad enough that I will not willingly do it again. The worst was waking up in the middle of my surgery. Luckily I do not remember feeling pain, only a lot of pressure as they rummaged around in my guts. That was a horrific experience mentally. I do not recommend it.

Recovery was both better and worse than I expected. Because of the infection, they left the wound open. It was a week before I could look at it. I just turned away and closed my eyes when they changed bandages. Yes, I am a big chicken.

Anyway, I never had a problem with the ostomy after my home-care wound ostomy nurse and I finally got my skin irritation under control. Sensitive skin had to get used to the appliance. Both the nursing staff in the hospital and home care were amazing. 

I really did not mean to write a book so I will end this by saying that this forum, Eric's videos and those of other ostomates has been a godsend. Thank you to all who contribute to this community.


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Dona
 Dona
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Posts: 738
May 1, 2017 7:10 pm  

WOW. That is an amazing story. You are very lucky to be here and have a great life once again. We all come here from so many different directions I am always awed at the paths we have all taken to get here.. I have never heard of your difficulty before. I too am very happy with my 'fix'.  ( I just had plain old UC). Thanks for sharing. And I hope you do write your book. 

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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uc2ostomy
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May 1, 2017 8:05 pm  

Well Kae im so glad you are here with us but i am so sorry you had to go through that pain and the surgeries :(  

 


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Kae
 Kae
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Posts: 56
May 1, 2017 9:49 pm  

As I said, I am a big chicken. The doc wants to reverse the colostomy, and put me back together. At this point I am still saying no as the thought of another surgery terrifies me. I also feel that my body is not ready for it. I still have a lot of gut pain, lower left side & low mid abdomen, and I still pass a bit of blood rectally. I am not at all confident that I have healed.  

It's been a month of calling and waiting and calling more to finally get a consultation for my colonoscopy, which I insisted on before I make any decision. So I go for the consult on Monday and hopefully can get the scope done fairly soon as well. Even though I need it, for peace of mind as much as anything else, I am still scared about it. I really hope the consult will put me more at ease.


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uc2ostomy
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May 1, 2017 10:04 pm  

I'm the same when it comes to any procedure be it a scope or surgeries they scare me and they don't if you know what i mean.  hope you get the answer you want but just remember it is up to you if you want to keep it or not no one else knows how you are feeling not even me, everyone is different  


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VeganOstomy
(@veganostomy)
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Joined: 6 years ago
Posts: 2596
May 2, 2017 12:08 am  

Thanks for the introduction, Kae =)  I know that you've shared your story with me a little while ago, but I'm glad that you've shared it here for others.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Kae
 Kae
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Joined: 3 years ago
Posts: 56
May 2, 2017 5:02 pm  

I remember post-op how concerned the surgeons and nurses were about me accepting the ostomy. I basically had no prep leading up to it. No chance to research, understand or accept. They were so surprised at how I was completely unconcerned about having the ostomy. I am neurotic in my concerns that everything is okay with it and my gut in general (I still have a lot of pain). The ostomy itself? I am completely fine with it. I don't mind it at all. I don't love it, I don't hate it, it's just there.

I owe this easy acceptance to my friend Kathleen. Kathleen was a coworker and friend who had had a colostomy about ten years before I met her. She had shown it to me and talked about it a bit. She was thrilled to be alive, happy to have her stoma. At the time, I thought that was about one of the worst things to have (haha, joke's on me!). But it was this friendship, her fantastic attitude about it, and watching her live a normal life that prepped me seventeen years before I would have my own. 

Kathleen and I had lost touch for several years but after my surgery I got in touch with her again. She has been a great help, and support to me as I wade through this change. A good community (like this one!), and good friends (like Kathleen) are essential for coping with these changes both physical and mental. Thank you, Eric, and Kathleen for facilitating this process for me. 

Also, Eric, I plugged this site to her. I hope to see her join and share her story and experiences.


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Dona
 Dona
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May 2, 2017 7:22 pm  

Hi Kae,

I had the same take as your friend. I am just happy to be alive. I can eat sleep and get exercise again. I got really tired of staying within 10 feet of the bathroom. So, I too am fine with it. Plus, after the surgery I bought all new under ware, pretty ones ( this might not apply to the guys among us, but it made me happy).

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
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May 2, 2017 7:24 pm  

P.S. It would be wonderful to hear from your friend, Kathleen. Nice to get input from a long time ostomate.

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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VeganOstomy
(@veganostomy)
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May 3, 2017 12:51 am  
Posted by: Dona

 

P.S. It would be wonderful to hear from your friend, Kathleen. Nice to get input from a long time ostomate.

I second this! Sounds like Kathleen would be a very welcome addition to the forums!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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