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glenn.giroir
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Today I was going through stacks of old papers when I came across this.  It took me aback for the rest of the day.  Lots of memories.  I remember the day that I got the phone call from My Gastroenterologist, just before this letter arrived in the mail.  It was 6pm and I saw on caller ID who it was.  The first thing that came to mind was that if my doctor is calling me, and at 6pm, it probably won't be great news.  I remember listening to him tell me that he recommended the removal of my colon.  I remember that although I had been preparing for this possibility for more than 25 years (I had almost lost my colon the first year of my Ulcerative Colitis diagnosis in 1995), it's funny how you react when faced with the reality.  My GI recommenced that I see him at his office.  He gave me the phone number of a surgeon who he recommended.  I remember him asking what I thought, and all I could say was that I couldn't think at the moment.  I remember the kindness in his voice as he apologized for the news, and suggested that I sleep on it and call him in the morning.  I remember my wife watching me on the phone, seeing in her face that she knew something was up.  I remember just being pretty numb.  I remember standing up from my hospital bed for my first walk post surgery, and knowing that this was going to be much more difficult than I could have imagined.  I remember breaking down and crying the day I was released from the hospital because 25 years of memories of chronic illness came rushing to the surface.  I remember the joy of seeing my two daughters for the first time after a week in the hospital and knowing why I was doing this.

It's been almost a year and a half since this letter.  Incredible how much life I've felt that I've lived since then.  I truly am at peace with my new reality.  Still learning, still living.   Sometimes still grieving, and mostly still smiling.  Ultimately, it's not what you get in life, but who you become.  (I've seen this quote attributed to many people, but I'm just going to put it out there).  

🙂 🤘       

 

1616302967-IMG_9076.jpg

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


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john68
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Hi Glenn, I have followed and read your posts with interest since you joined the forum. We seem to be around the same age and I can relate to a lot of what you say. It’s amazing and scary to look back at the journey we all have taken to get here. Acceptance is a huge part of healing, I enjoy the encouragement and help you bring here keep up the great work keep striving forward and keep er lite 🔥. When you post you help others more than you realise 👍

ileostomy 31st August 1994 for Crohns


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glenn.giroir
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@john68

Thanks, John.

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


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ChrisandBagpus
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I think we have all had that moment.

"I remember him asking what I thought, and all I could say was that I couldn't think at the moment."

When you are numb from the news, they expect you might have an reply or that you can even "sleep on it" lets be honest who would be able to do either! IMO I would have preferred  a sleeping shot for a good night sleep and face the question the next day when the shock had gone through? what's others thoughts?

 

Colostomy Jan 2020


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john68
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I really had no health problems until January of 94. From then on it was being sick and running to the loo and blood loss. In fact the first attack was put down to food poisoning. I had a couple of months free and even put weight back on. But it returned and put me back in hospital for 6 weeks. I was on steroids which never really worked. It was mentioned that a bag to rest the bowel for a while could be an option. I didn’t take that news well. Things dragged on in and out of hospital and I had a visit from a girl who had a bag fitted 5 years previous. A friend had told her my story and she asked if I minded a visit. I expected some old lady on a stick 😂 what a got was a young healthy and very attractive young woman. Ok I can say that cos I was 24 and single 😁 . Her visit made my mind up I want my life back. My doctor got me moved to a hospital in Belfast as a surgeon there had a good reputation in bowel problems . I met and told him “I want a bag” he smiled and said let’s do some tests. Long story short the results where not good and I was rushed into surgery. I was 85lbs and looked a funny grey colour. My health returned in leaps and bounds . 

There is a down side to my tail. Remember the girl who visited. Turned out she had a boyfriend 😐 

ileostomy 31st August 1994 for Crohns


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glenn.giroir
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@john68

John, Thanks for your story.  I love it. I think you’re correct in that we’re pretty close in age.  I was 25 in 1994.  That makes us both in the prime of our lives today.  😄  And, we do have very similar stories.  I was in college in 1995 when I started having cramping and diarrhea.  I soon started filling the commode with blood.  Since I had a strong family history of colon cancer, I was convinced I was dying of colon cancer.  After losing about 30 pounds and taking on the gray color that you describe, my family Dr set up an appointment for a scope.  When I awoke, the Dr said he had found something.  Prepared for a diagnosis of cancer, I instead was told that I had a disease I had never heard of.  In the weeks that followed, my UC was on such a rampage that Drs were afraid that my colon would perforate.  About then, facing a potential surgery, my Dr suggested that I talk to a patient of his with an ileostomy.  Same as you, I begrudgingly said yes, and to my amazement, just as in your case, it was a young woman about my age who had lost her colon to Crohn's disease and was adapting to life with her ileostomy.  Surprised and encouraged by the knowledge that you can be young and active with a stoma, from that point forward I was okay with the potential of an ileostomy.  My UC eventually calmed down for nearly 10 years until it returned with a vengeance.  I suffered through several more years until my colon was nearly nonfunctional and meds did nothing for me.  My last scope (in 2019) turned up the pre-cancerous cells.  Given my family history of colon cancer and the state of my colon, the decision was quickly made for surgery.  I chose permanent ileostomy over trying a j-pouch, simply because I was done with all of it.  I wanted the best chance of resolution of symptoms and lowest possible chance of cancer in the GI tract.  And, also for me, this was not a love story.  I never saw that woman again.  But, I eventually did find the love of my life (completely non-ostomy related) and now have a wonderful family who keep me young.  Take care! 

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


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SqueakyandLiza
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I love reading your guys stories. I too am the same “prime of life” age as you both. My story is so different though. I have apparently had Crohn’s since at least 2007, maybe longer. But I ignored any symptoms I may have had. I had a fistulized abscess in 2007, but no one checked me for Crohn’s back then. It was just something unexplained that happened to me. Because of that fistula which never healed, I felt like that was the cause of any unexplained bleeding so I never went to the doctor about it. 

Fast Forward to 2018 when I had what I thought was a bad stomach flu. A trip to the emergency room resulted in emergency surgery because my colon was already perforated. No hunky guy to convince me ostomy life was the way to go. 😂 And no one gave me a choice. Which is probably pretty good, because I don’t think I would have had the courage to voluntarily do this to myself. You guys were so brave!!  Or easily influenced by pretty girls. 😂😂

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


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ChrisandBagpus
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Posted by: @john68

 

There is a down side to my tail. Remember the girl who visited. Turned out she had a boyfriend 😐 

Sometimes life sucks :-) :-) 

Colostomy Jan 2020


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VeganOstomy
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Thank you for sharing that @glenn-giroir.

I always find it interesting how different people react to such news, but even more so how they move forward. I'm glad things headed in a positive direction for you 👍

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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sjlovestosing
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I thought I'd add my experience to all your brave stories. I had been having bleeding for at least a year - my naturopath, at that time, believed  it was an internal hemorrhoid. I went for a year of more bleeding, but then was frequenting the bathroom up to 7 times a day - blood and all. I figured that I must have had Crohn's , since my youngest brother suffered from that disease. Finally, I went to another doctor who recommended a colonoscopy. I was sent to  a superb gastroenterologist who took one look at the "hemorrhoid" and got me in the next day for a colonoscopy. This doctor pulled no punches after I came to. He said that I had cancer and handed me a visual aid and said  that I had to have an operation to remove my anus and rectum and that I would have a permanent colostomy. My husband and I were stunned to say the least. I remember being numb and couldn't even look at the visual he gave me that day. The next day, I had a good look and broke down in tears. After a few minutes of sobbing, I pulled up my "big girl pants" and went to work doing all the research I could about the subject of colostomies and colorectal cancer. Part of that search brought me to this website, and I will be eternally grateful to the One who led me here and saw me through my challenges. I will also be truly grateful to Eric and to all of you wonderful people who have given me encouragement, advice and friendship for the past three years. (I believe it was in March of 2018 that I first came on board!)

God bless you all!!!

Stella


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LLNorth
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Hello, Stella sjlovestosing,my story is similar to yours, and I had my colostomy in April 2018. Had occasional spotting for about 10 months and went to see the general practice doctor, who very nervously told me she was going to refer me to a colorectal surgeon.

Here is a strange thing: During those 10 months I dreamed four times of a plaid/checked cloth, and woke each time very frightened. At that g.p. appointment I knew something was up the minute the doctor walked in the room as she was wearing a skirt of that same fabric.

 

 

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


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SqueakyandLiza
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@llholiday

On my gosh, that gave me chills!!

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


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Stella
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Really want to say thank you so much of this site and Eric.

I had my surgery to remove big part of my colon in Nov 2020. I was so scared when I was in hospital and on day of release from hospital. Because I couldn't see my future and know nothing about ostomy.  I didn't know how would be my future days.

I live by myself with my boyfriend helping me to do grocery and gives me ride to hospital and seeing doctors.

I cried a lot and didn't know who should I go to and learn more except my home care nurse.

Then I tried to search how to change ostomy bag and found this site. Eric just like an angel to me. Your video is so detail and explained so many tips that changed my crying life. From then on I knew I was not alone and angel is always here to help.

Eric's topic about protective ring saved me a second time when I see the skin besides the stoma edge changed.

Now I determined to face my future moments bravely. I learned from you Eric. You turned your health issue into something that save others lives. I believe you saved many many other and giving them joy back into their lives.  At least you gave me back peace and joy and confidence in my life.

I'm a stage 2 rectum cancer patient. I'm on chemotherapy treatments after my surgery. Now I'm in peace and bit more bravely face every moments in front of me. Hope I can have chance in the future that I can do something and benefit for others.


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john68
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Hi Stella,Welcome to the forum, it’s heart warming to hear the way the site has turned things around for you. It’s definitely a unique site ❤️. The very best going forward and enjoy the community 👬👫🕺

ileostomy 31st August 1994 for Crohns


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VeganOstomy
(@veganostomy)
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Posts: 3230
 

@stella Welcome to the forums and thank you for sharing your experience. You had a rough start, but I'm glad you were able to quickly find resources to help you along the way.

And kudos to your boyfriend for helping you out :) 

I hope that you continue to move forward in a positive direction. Please, feel free to post any questions you have in the appropriate forum, and we'll be happy to share what's worked for us. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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glenn.giroir
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@stella

 

Hi Sella.  I'm glad you're able to feel better about dealing with your ostomy.  This site has been so great for me also.  I can remember returning home with my stoma and being so afraid of how I was going to learn to do everything I needed to do.  Sites like this one are gold for us.  My best wishes to you as you continue to move forward.  

Glenn

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


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Stella
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@john68

Thanks John


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Stella
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@veganostomy

Thanks Eric


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Stella
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@glenn-giroir

Thanks Glenn


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sjlovestosing
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(@stella)

From one Stella to another, welcome to Vegan Ostomy! You said, "Hope I can have chance in the future that I can do something and benefit for others." Trust me, you already have.

 

God bless,

Stella


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