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One year ago today

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bagbob
(@bagbob)
Joined: 5 years ago
Posts: 22
Topic starter  

March 3rd, 2021 was the date of my ileostomy surgery. It wasn't an emergency but without that surgery I would not have survived much longer.
First and foremost, this site and forum have been very helpful and a valuable resource for me. Eric, I can't thank you enough for your work on all this. Thank-you. Also the members who share their challenges and solutions may not always realize that someone like me is reading and feeling like I'm part of this family. Thank-you.
A few things I've realized about me through my ulcerative colitis. I thought I could keep managing my symptoms. I did for a very long time, until I couldn't. Then there was the doctors. I don't know if maybe I presented myself as being more healthy than I was or maybe I thought I was more healthy than I was. After seeing a number of different doctors and taking all kinds of meds. My symptoms slowly got worse. Then there was our medical insurance. Just as I was getting very sick and weak, my wifes job ended when her department downsized. Which meant our insurance coveraged ended also. I decided (because of no insurance) to postpone doctors appointments for two months until medicare (USA turning 65) kicked in. Just as I was resuming doctors appointments, I had a scare (scared my wife and daughters too). I became so weak that my body could no longer fight off infection. So off to the emergency room. I ended up in the sepsis unit at the hospital for a week. First time in my life being hospitalized overnight. An IBD specialist I had found a couple of weeks before wanted to do a colonoscopy that week (to see if she would recomend surgery) however I didn't make it to that appointment. When she found out the condition I was in, my surgery was schedualed asap. When the surgeon removed my colon, he cut it open and took a picture of it. It was pretty much completely ulcerated and dead.
The day after my surgery was such a huge relief, it's hard to describe. I had lived with my diseased colon for so long that I had forgotten how good it feels not to have symptoms.
This last year my challenges have been quite a bit easier than managing the symptoms of ulcerative colitis. Things like learning how to wear my clothes. I guess I'll never be as comfortable wearing clothes as I was before. Getting back in shape. I've always been physically active so it feels good to be back. I'm back to work too. Forty-four years ago I founded a small company that restores antique cars. So I'm back to doing what I love. One thing that surprised me is that I have gained weight. I've always been slender and could eat as much as I wanted without gaining any weight. Well that's changed. So my clothes not fitting issues are partly because I'm about 30 pounds heavier then before. I wonder if not being able to gain weight could have been from my ulcerative colitis?.
So on this anniversery, toast a glass of water (we must stay hydrated) as I celebrate one year.
~BOB


ulcerative colitis since 2011
ileostomy 3-3-2021


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 12 years ago
Posts: 4716
 

Congrats on feeling better through this past year, Bob. What a journey you've been on.

It's common, and sad, to hear people delaying medical care because of insurance. Nobody should be put in that position. I often take for granted just how good the Canadian healthcare system can be (not without its flaws, however), so stories like yours are humbling to say the least. 

The failure to gain weight before, is probably caused by you being sick. Our body goes on overdrive when we have an inflammatory disease, so you were likely burning calories at lightning speed - if you were even able to absorb any calories efficiently. 

Age could also play a role, as I'm also finding it way harder to lose weight now than I did 10 years ago. 

But you are here and you are healthy. You'll continue to gain experience, so I think that year two will be even better than this first year.😃👍


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


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

Hi Bob, Well done 👍 and many Happy Returns. It sure does feel good to return to doing normal every day stuff. Classic cars now that’s heaven on earth. I really luv vintage and classic vehicles and spend many a Saturday evening at rallies around the country. The smell of leather, gasoline and engine oil is so good!! It should be bottled and sold. 😂 I agree with Eric the next year is gonna be even better. Best wishes 👍🚗🚜⛽️🔧🔩⚙️🏁


ileostomy 31st August 1994 for Crohns


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

Bob,

it is certainly a day to celebrate! I celebrate Squeaky’s birthday every year. I’m glad to hear how well things are going for you. 

I hear you on the clothes. Other than the leaks and bad skin as a result, not being able to wear some of my favorite clothes is one of the hardest things to adjust to. I miss wearing jeans especially. 

Congratulations and happy stomaversary!


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


   
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LLNorth
(@llholiday)
Joined: 7 years ago
Posts: 609
 

Hi, Bob - here is a toast, indeed, to your anniversary! How wonderful that you are enjoying improved health.

Regarding clothes, especially pants, although I was never a fan of Spandex before my ostomy I have come to appreciate it.

Liza, I wear jeggings (jeans leggings made of cotton with a little Spandex) almost every day; they have functioning back pockets and a pretend fly stitched on. I buy one size up to keep them comfy on the tummy and stoma.


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


   
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Tigerlily
(@tigerlily)
Joined: 5 years ago
Posts: 570
 

Bob, what an incredible story! You are so lucky! Hearing horror stories of people being cut off medical insurance makes me shudder. Like Eric, I am so grateful for our universal healthcare (it’s not perfect). Please push your elected representatives to do better.

 

According to my husband, clothes are highly overrated and we should just get rid of them altogether, but that’s a whole other story!😂 

 

So glad you’re still with us and able to share your journey. Take good care.

 

Laurie


Just a semicolon


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

What an incredible story of survival! Good for you and congratulations on your one year anniversary! You truly are yet another amazing  inspiration to us all.

God bless,

Stella



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

@llholiday 

By the way, where did you get your jeggs? They sound comfortable.😊



   
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LLNorth
(@llholiday)
Joined: 7 years ago
Posts: 609
 

@sjlovestosing here is a picture of the back of the jeggs and also the tag. I have been buying them online. Regular length. They are high enough so the waistband is above my stoma. I think in a petite the rise might not be high enough. And I buy a size up, as I said,  both for space/comfort for my stoma and also because they don’t fit skin tight, and look more like regular jeans.

Ps  The brand is Hue.

pss Hue also has some nice black ones, 93% cotton and 7% Spandex, very soft and comfortable -again, I go one size up for comfort and not such a tight fit.  * but these don’t have pockets - they are not denim-y; I really like them, they’re lightweight, cotton-y, not see-through at all*

                                    


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


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

@llholiday  

Thank you. They look great 👍. I will definitely check them out!



   
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(@squeakyandliza)
Joined: 7 years ago
Posts: 1066
 
Posted by: @tigerlily

According to my husband, clothes are highly overrated and we should just get rid of them altogether, but that’s a whole other story!😂 

Laurie, your husband sounds like a character!!  You need to be able to laugh to survive this ostomy life. At least that is what works for my hubby and I.  🤣


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


   
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 LK
(@dlkfiretruck)
Joined: 9 years ago
Posts: 1697
 

How wonderful!! Congrats on your ONE YEAR!! Its always nice to read when appreciation has fallen into the right place with gratefulness. 


Linda


   
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(@kedikat)
Joined: 5 years ago
Posts: 91
 

One more day till my one year ileostomy anniversary. April 1. Those jokers at the hospital. Still haven't found my butthole. Searching with both hands too.


Why?


   
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 LK
(@dlkfiretruck)
Joined: 9 years ago
Posts: 1697
 

@kedikat  ... Congratulations to you too then! Only a few hours away!  Not long to go to mark that date for you!  How do you feel about it a year down the road?? 


Linda


   
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