the ostomy files

I'm Bertina, I am in my mid-twenties and I have a stoma. His name is Stan Lee.

[stanleestoma]

... Of course I had to go visit these lovelies ❤

[stanleestoma]

First time out of the house, on my own, since surgery 😎

[stanleestoma]

It has been cold here, which means I am more than happy to hide inside, but some times you need to brave the elements. Getting to visit with these furry faces was worth it x 1,000 ❤

[stanleestoma]

the, so called, "naked" selfies are more popular because they show off the bag, people can see it. I thought that was obvious...

No idea how old this is, but you can still show off your bag without being half naked. Now, I don't care if people are naked, but when people think of this disease, I prefer them to think of more than half naked girls...but that is just me.

[stanleestoma]

As of December 8th, I had my total proctocolectomy, which has been three years coming. 

Since my original surgery for my ileostomy had so many complications and infections, we waited as long as we could to go back in. After minimal thought, for me the full deal was the best way to go. I looked into j-pouch surgery, but at the end of the day for me - not worth it. 

I have to say, I am rather happy with the choice. I’ve grown to really like having Stan Lee (my stoma) and having him is a lot more comfortable. 

The first half of recovery was short, only 5 days in hospital, then I was sent home. Much better than my 41 and a 1/2 days after my last surgery. I have 18 inches of staples in my mid section, partly due to the proctocolectomy and because I had to have a hernia removed from my stoma. I’m not sure exactly how many stitches, but dare I say they are a pain in the ass? ha! 

I’ve been home for two weeks and half of my staples are gone, the surgeon has decided to leave some for a little while longer, to make sure nothing came open. Now to heal everything up, so far so good. 

It’s 6 weeks before I can do too much. No heavy lifting, no driving myself, no strenuous exercise or activity. In the time I have been home, I’ve left my house a total of 5 times. It’s safe to say I am going a bit crazy sitting in. Now that the Holidays are almost over the people are slowing on their visits and I believe January may be a long month. 

To say I am interested to see what 2017 brings would be an understatement, but whatever it brings - I am sure it will be all kinds of thrilling. I can’t wait to get back into working the horses (who have both came up lame as well), showing, traveling, and getting into all kinds of crazy with friends. 

Oh! The best part? I officially have no bellybutton. 

[b-j-d]

Only the finest for Stan Lee #worldostomyday #ostomyawareness #ulcerativecolitis #ileostomy #threeyearsold #stoma #boweldisease #hesclassy #happyworldostomyday #awareness

[music-and-quotes]

An honest man’s pillow is his peace of mind.

John Cougar Mellencamp, Minutes To Memories (via music-and-quotes)

[nomorebellyaches]

[coffiend-jackalope]

Me Before You will kill people

Disabled babies will be aborted because potential parents will go and see that dead is better than disabled.

It will kill disabled children whose parents or caregivers will go and see that death is better than disabled.

It will kill disabled children and teenagers who struggle with self worth and think that death might be better than disabled.

It will kill newly disabled people who think their life maybe already over.

This movie will kill people.

[black-moon-fox]

I’m sorry, which movie is this? I’d like a bit more information.

[coffiend-jackalope]

Here

[stanleestoma]

Have you even read the book? 

In the story, this was not a choice that Will Traynor made lightly. This was not something his family allowed him to just walk into. In the book Lou Clarke did her best to seek advice and help from others, who had disabilities. Do you not remember the character Ritchie? We never saw him only as somebody Lou got advice from via an online forum, but he was very understanding to her situation. He and many other people she met online were all varied in opinions - most saying that this was Will’s choice, BUT they would NEVER seek out such an option for them self. 

You are clearly going on what you have heard or on a base without actually knowing the story. 

Now, if you believe this is going to kill people, then you must also believe that there are people out there who think 2 men, an elf, a dwarf, 4 hobbits, and a wizard are scaling a mountain somewhere in New Zealand, trying to destroy and evil ring. Or maybe you believe that Miley Cyrus and Hannah Montana are two different people? 

I don’t know why you are so dead against this, but let me tell you something, people are allowed to make their own choices. You can’t blame that on a book or a movie. What if this movie helps someone? What if someone sees this film and they have been very unhappy with their life and they want to end it? What if they hear this story and think : Wow, if I do that then so many are going to suffer in my wake. Maybe, maybe I can find somebody who is as good to me (or they have someone who is good to them) in the way Lou is to Will and they decide that is worth living for? 

What if a disabled person sees this and they are in the mind of Will, but decide they want to be their own Lou? 

Don’t go shaming something because you think it will make the world bad. There are far worse things other there killing people, than Me Before You. 

[stanleestoma]

if you dislike "naked selfies" promoting people w/ ostomy bags then start telling your own story. otherwise you sound like someone unhappy w/ their life.

Actually, I have told part of my story. In a very public, well respected magazine. I didn’t pen it myself, but I did tell the writer the story, along with some things she knew from being there during everything. Oh, even better, my photo is in a world spread magazine and - wait for it - I have my clothes on! You can see it here

If you’d like to read the actual article, I will be more than happy to share, now that the public has had a chance to read it :) 

[stanleestoma]

Explain It, Please?

It's rather late right now, around 11:30 PM AST actually, when I see world trending news and notice the word “ileostomy” among the headlines. Awesome! I think, I have one of those. Curious as I am, I click the link to read about the lady in the article. Like many of us, she has had surgeries, removal of intestines, bowels, etc and now has an ostomy.

As I am reading, I begin to wonder: Why is this world news? Why is she more special than anyone else who suffers from crohn's or colitis?

Then it hits me: she like every other person who “makes news” about this disease, they have something in common. They posted a half naked selfie.

Now, I have nothing against people posting half naked or naked selfies. Do whatever you want is how I see the selfie game. I mean hey, 3/4 of my selfies have my horses in them.

What bothers me is why does the public only want to talk about these diseases, when someone is a model or half naked in the photos?

Okay, this could come off like a jealous rant, or whatever, but this is a serious question. Why?

This is something that millions live with every day. People, around the world, wake up every day with an ostomy. They have gone through surgeries, physical and emotional trauma, they have missed school/work/life events because of this disease. Why do we only focus on it when someone thin, model like, and half naked posts the photo?

Before you say: that isn't true, we talk about it whenever someone with an ostomy comes forward...No we don't.

Actually, unless you have an ostomy, you don't even notice when someone posts a selfie with their bag unless they are barely dressed.

I am thrilled people want to support those of us with an ostomy, awesome. Good for you. But do it because you care or want to learn about the disease that fucks up people's lives. Not because you see a half naked girl. Don't label a select few as heroes, when there are many, many more out there doing the same thing.

Are we so brainwashed, as a culture, we only hold those with certain beauty standards at the top? Are we so brainwashed that we don't take into account the countless others, who are told their photos are “disgusting”, “inappropriate”, and “uncalled for”?

Like I said, I am thrilled someone with an ostomy is speaking out, but please help me understand why only a handful get held higher than everyone else. If you praise one, why not praise them all?

[b-j-d]

Doing the #gutsywalk on June 5 2016, in support of #crohns and #colitis If you are interested, you can donate (or are local and want to join the team) to my team via the link below. Every little bit helps. https://m-crohnsandcolitiscanada.akaraisin.com/11470/team/111460 😘😎

#makeadifference #fredericton #newbrunswick #ibd #boweldisease #ostomy #ulcerativecolitis #ileostomy #pleasegive #donate #goodcause #helpusout #gutsywalk2016 (at Fredericton, New Brunswick)

[poems-and-words]

[stanleestoma]

So, this just came out. It was written by a very good friend, the over all article talks about how horses and other pets, who are reiki attuned have helped us with various parts of our lives. My part talks specifically about my ulcerative colitis. How I was so sick, my surgeries, and how Gem and his reiki helped me.

[stanleestoma]

You know those days, where you legit just don’t give a shit? I’ve had so many lately, I find they are good for reading. Man, I’ve got so much reading done lately. 

[fabwithfibro]

[lymefight]

So true.

[catastrophiccharlie-deactivated]

Ok so I need to write out why the “have you tried yoga” thing bugs me so much. First of all, I know my body better than you so stop. You know nothing about my condition. You are not a qualified expert (and some doctors don’t even fall under this catagory as they tend to shy away from people with chronic illnesses). You are not a person living with this disability. You cannot understand or relate, as much as you may want to. I am the one living with this not you. Secondly, it places the blame on me and not on my condition. It suggests that I’m not trying hard enough to feel better so the way I’m feeling is my fault. My dad tells me all the time that I would feel 100% better if I just exercised more. Living with a disability is difficult enough on it’s own so don’t try and suggest to me some idiotic suggestion about something you know nothing about. I do not chose to feel this way and I will not be cured by simply exercising or doing yoga. Please add on to this if you have other thoughts.

[dat-spoon-life-deactivated20170]

A freaking men

[stanleestoma]

I used to do yoga, I loved it! Now, I have a stoma and an ostomy in the middle of my body. Folding myself like a pretzel hurts and as I have learned, causes shit to explode. HA! HA! HA! Sure, it may help my arthritis, but it isn’t worth the rest. 

As for other exercise, I walk/hike, swim, and enjoy the odd run. I think the biggest thing is to know your body. I am very fortunate, the able bodied people in my life are the ones who had taught me this.