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glenn.giroir
(@glenn-giroir)
Joined: 6 years ago
Posts: 300
Topic starter  

Hi to everyone, and happy new year.  I just want to introduce myself to this community and look forward to meeting some people with similar stories.  I was diagnosed with Ulcerative Colitis in 1995, when I was 25.  I quickly progressed to having moderate to severe disease through my entire colon.  I would typically flare about once a year, and have a really bad time with things for a few months a year. My latest scope turned up dysplasia, so given this, my lack of response to medication, and the length of time with UC, my GI and I decided that removal of colon was best option.  Surgery was Dec 09, 2019.  It was really tough.  Had a blockage the night after my surgery due to inflammation.  I was seriously waiting for the alien to pop out of my abdomen.  Never experienced pain like that, and the narcotics they pumped into me really sent my mind into a bad place.  Six days in the hospital and things improved.  Got home and things really improved.  Lost about 12 pounds.  I'm almost 4 weeks post op now and have gained most of the weight back.  Still nursing my incisions - one from navel to pubic bone, and the other is from the removal and closure of the anus.  Then several punctures from the laparoscopic surgery.  Anal wound is taking longest to heal - still drains a bit, but getting much better.  Anyway, sorry for being long-winded, but I have to say that I already feel so much better than I did before the surgery, and I find the whole ileostomy thing fascinating.  In a weird way, I actually find it all exciting, and shopping for ostomy products feels a bit like Christmas shopping (I'm strange, I know).  I'm returning to work as a high school science teacher in about a week.  Looking forward to teaching without having to sprint down the hall to the bathroom in the middle of my lectures.  Wonder what my students will think of the interesting sounds that my abdomen produces now?  Life is an adventure.  I look forward to learning more from all of you.  Take care.  


Ulcerative Colitis (1995)
Permanent Ileostomy (2019)
Doing what it takes to enjoy life to its fullest.


   
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(@john68)
In Memorandum
Joined: 9 years ago
Posts: 2059
 

Hi Glenn, Welcome to the forum, it’s good to hear that you are excited about going forward, plus your lectures can be twice as long 😃.


ileostomy 31st August 1994 for Crohns


   
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(@squeakyandliza)
Joined: 7 years ago
Posts: 1066
 

Welcome Glenn!  You are doing great for being less than a month post-surgery. Things should keep getting better all the time!!

Oh, and we know all about the noises. My stoma is named Squeaky for a reason. 🤣


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


   
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sjlovestosing
(@sjlovestosing)
In Memorandum
Joined: 8 years ago
Posts: 651
 

Hi Glenn and welcome to the forum. This is the best place by far for info (thanks in large part to Eric!!!) support, and understanding. Despite the setbacks in the hospital, it sounds like things are on the right track for you. I love your positive attitude!

The anal wound will take a bit of time to heal. Be patient, and try using a waffle pillow or donut pillow till things don't feel so sore. 

Wishing you all the best and God's blessing as you continue on your ostomy journey.

Stella



   
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Lynne
(@lynne)
Joined: 7 years ago
Posts: 74
 

Hi Glenn.  Welcome.  You have a great attitude.  I love your curiosity and excitement about now having a more "upfront and personal" seat at how your body's digestion works.  Like a true scientist.  I'm sure you are a great HS science teacher.  I have a somewhat similar story- UC 30 years ago at 22- recent end ileostomy (8 weeks, although I still have my now defunct jpouch hanging around) and feel lucky to have found Eric's site and such strong community support for those of us working to live life fully with this new (and interesting) way our bodies work.  All the best!



   
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Dona
 Dona
(@dona)
Joined: 9 years ago
Posts: 832
 

Welcome to the ostomate community,

It sounds like you have been through a lot but are doing really well. It is amazing how fast we can heal and adapt. And once you start to feel better and get back to a job you clearly love things will look a lot better. This site of Eric's has helped so many of us, welcome to the conversation.


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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Tony
 Tony
(@ileostony)
Joined: 7 years ago
Posts: 246
 

Hi there Glenn,

 

It's always so great to have new members join us. As I like to say to newbies, this community is a true haven for people in our situations. You won't find a better online home for ostomates anywhere.

 

Your stoma noises are a great opportunity for a science lesson, as you no doubt have realized. The kids will also be exposed to an individual with a situation that most people only hear about, which no doubt makes for more teachable moments. Welcome to the community and to your new normal. If you're interested, here's my introduction. Again, welcome.


Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


   
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glenn.giroir
(@glenn-giroir)
Joined: 6 years ago
Posts: 300
Topic starter  

@ileostony

Hi Tony.  Thanks for the response and kind words.  I read your introduction, and I think you are an incredible person for facing reality the way that you did and are.  I truly hope that you continue to do well in your battle with this disease.  While I cannot truly understand the challenges that you describe with dealing with an Ostomy without sight, much of what you write of rings true.  I am absolutely in awe of my wife for how she handled this with me.  She did so much for me in the hospital and at home.  Like you said, I expected that she would, but it was the way that she did it that amazed me.  Like you described it - she accepted my Ostomy like it had always been a part of me and it was no big deal at all.  She is an amazing woman.  Also, your description of the opiates rings true with me.  I was pumped so full of dilaudid that I did not know if what I was experiencing was reality or not.  I felt so strange, that I started to wonder if I was kind of like Bruce Willis in the Sixth Sense.  No kidding.  I was wondering if anyone could really see me or hear me, or if all of this was happening to me out of body.  It took several days to get my head cleared up enough to truly accept reality.  It was strange.  Another thing that was strange to me was the way that my mind would not quite accept what had happened to my body.  I'd have dreams that nothing had happened to me.  I'd wake up and want to jump out of bed to prove it to myself, only to realize that my body was not really working, and the pain snapped me back to reality.  I have always had problems with being sensitive to strong pain killers, but this really was a surreal experience for me.  If I could have done without narcotics, I would have gladly done so, but the blockage the night after surgery was too much to deal with.  Thanks for sharing your story.  And, I appreciate you responding to me.  Yes.  The stoma noises will be fun to deal with in the classroom.  I think they are pretty funny, and my two daughters agree.  We just laugh.  It seems that farts are always pretty funny to kids, and when they come from the abdomen, they become somewhat of a superpower.  :)  My family has been so great through this.  Take care.  I wish you the very best.  


Ulcerative Colitis (1995)
Permanent Ileostomy (2019)
Doing what it takes to enjoy life to its fullest.


   
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 LK
(@dlkfiretruck)
Joined: 9 years ago
Posts: 1702
 

Welcome Glenn...why not teach a class or two on ostomies and appliances to raise awareness.   This would give a chance for students to be aware that all plumbing is  not the same and give them time to ask questions they may not normally get to ask.  Choose a class name for the new member!  There are lots of ways to humor and hide a boisterous new member of society.  Moving a classroom room chair quickly on the floor and blaming it on that squawk comes to mind.  Have fun with it.  Glad you found us! Be as well as you can be and don't be shy here please.


Linda


   
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LLNorth
(@llholiday)
Joined: 7 years ago
Posts: 610
 

Hi Glenn, Welcome. You will find so much in this VeganOstomy website, and meet wonderful ostomates, also. Best wishes to you. LLNorth


Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


   
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Tony
 Tony
(@ileostony)
Joined: 7 years ago
Posts: 246
 

Hi Glenn,

 

Wow, it really sounds like you went through it with the opiates. I thought I was bad when I couldn't remember the name of teh President fo the United States, even after the nurse recited his campaign slogan as a hint. I have a bit of a high tolerance to narcotics, so I was pretty much maxed out by necessity.

 

THanks for sharing about how beautiful your wife and daughters have adjusted to your ostomy. There's nothing like iti nall the world. 

 

Linda, love your idea of teaching an ostomy class for the kids at school. It totally plays into the science subject and gives some possibly nervous kids a chance at reassurance and maybe a bit of healthy humor.


Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


   
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sjlovestosing
(@sjlovestosing)
In Memorandum
Joined: 8 years ago
Posts: 651
 

Hi Glenn,

What kind of science do you teach? If it's Biology, teaching about ostomies would be perfect!

Stella



   
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glenn.giroir
(@glenn-giroir)
Joined: 6 years ago
Posts: 300
Topic starter  

@sjlovestosing

I used to teach biology - I was a wildlife biologist by trade before becoming a teacher.  I teach astronomy and geology now.  But, there is always an opportunity to have a teachable moment, that's for sure. I think it's a great idea to talk about that in class.  There is a good chance that I even have a student or two with inflammatory bowel disease.  I have had students in the past with IBD.  And, I know that we have several students in our 1,400 students who have ostomies.  I don't know any of them, but I was talking to our school nurse before my surgery to let her know that I may need some support upon returning to school, and she told me that we do have students with ostomies and I'd never know it.  Of course, she respected their privacy, but It was eye-opening to learn that.    


Ulcerative Colitis (1995)
Permanent Ileostomy (2019)
Doing what it takes to enjoy life to its fullest.


   
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glenn.giroir
(@glenn-giroir)
Joined: 6 years ago
Posts: 300
Topic starter  

@ileostony

Thanks, Tony.


Ulcerative Colitis (1995)
Permanent Ileostomy (2019)
Doing what it takes to enjoy life to its fullest.


   
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glenn.giroir
(@glenn-giroir)
Joined: 6 years ago
Posts: 300
Topic starter  

@john68

Thanks, John.  I appreciate it.  


Ulcerative Colitis (1995)
Permanent Ileostomy (2019)
Doing what it takes to enjoy life to its fullest.


   
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glenn.giroir
(@glenn-giroir)
Joined: 6 years ago
Posts: 300
Topic starter  

@squeakyandliza

Fortunately, most of my stoma's talking occurs at night.  For the first few weeks, I would jump in my sleep from the feeling for something coming out of my abdomen and making noise while doing it.  It was a funny feeling when I got a big movement at the beginning.  It took a while for my mind and body to get used of that.  


Ulcerative Colitis (1995)
Permanent Ileostomy (2019)
Doing what it takes to enjoy life to its fullest.


   
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glenn.giroir
(@glenn-giroir)
Joined: 6 years ago
Posts: 300
Topic starter  

@sjlovestosing

Thank you, Stella.  


Ulcerative Colitis (1995)
Permanent Ileostomy (2019)
Doing what it takes to enjoy life to its fullest.


   
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glenn.giroir
(@glenn-giroir)
Joined: 6 years ago
Posts: 300
Topic starter  

@lynne

Thank you, Lynne.  


Ulcerative Colitis (1995)
Permanent Ileostomy (2019)
Doing what it takes to enjoy life to its fullest.


   
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glenn.giroir
(@glenn-giroir)
Joined: 6 years ago
Posts: 300
Topic starter  

@dona

Thanks, Dona.  I appreciate it.


Ulcerative Colitis (1995)
Permanent Ileostomy (2019)
Doing what it takes to enjoy life to its fullest.


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 12 years ago
Posts: 4731
 

Welcome to the forums @glenn-giroir!

Thank you for your introduction and I hope you're able to make use of this site and forum. 

I'm not surprised that you've got students at your school with an ostomy. Considering that IBD is most common in younger people and ostomies often follow, I would guess that you have 5-10 students that have an ostomy (permanent or otherwise) in your school.  

If the opportunity ever came up where you were asked to be an ostomy mentor to some of those students, would that be something you'd consider? 


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


   
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