Crohns & Colitis Awareness Week - My story in a Nutshell!
Hey fellow IBDer's, it's that time of the year again, no not Christmas, that is still 19 days away. It's Crohns and colitis awareness week!
What's your story? Do you know how powerful a story can be? Not only for yourself but for others if your willing to share it.
It took me years, about ten in fact up to get brave enough to put myself and my story out there. Ten years of hiding a part of me because even while enduring the hardest thing I has ever been through I was worried about what others thought.
Crazy the things we do... My quick story for those who don't know me, I was diagnosed with UC in 2006, by 2007, I had gone from 78kg to 47kg and my bowel perforated on the operating table, with my heart stopping soon after. I was revived only to quit once more before waking with an ostomy and entering a week long trance of pain filled ketamine hallucinations.
Where I kid you not I thought I was an umbrella, a wicker chair & table set, where people kept sitting on my chest and was so strong my grip could crush anyone's hand that went to hold it. The fact I hadn't slept for 13 days straight by this point didn't help. 100mg IV steroids every 4 hours will do that to a girl.
Things we do to save the things trying to kill us still amaze me.
Fast forward through a few surgeries and I have a j-pouch, yay, no more ostomy and every thing I had hoped for since getting a "bag", or not... within a month my UC had flared in my pouch and I was back to living in the toilet.
Fast forward though some more surgeries, back to ostomy life and some serious decisions, I choose to go permanent and be a Barbie for life. As Murphy's law would have it, the first attempt landed me back in hospital with infections and I had an open wound for months post the second try.
All up I had 12 surgeries, four stomas, spent months in hospital and what felt like years in the toilet, only to now live a healthy active life with my amazing husband and newly adoption son.
Long story short, when I thought my life was over, I now know the best was still to come.
#share2steem #crohnsdisease #ulcerativecolitis #ostomy #ileostomy #ibd #ibdawareness #ostomybag #barbiebutt #jpouch #ostomylife
insideoutlet
If no one else has told you today, you're pretty awesome!!❤️
Awww shucks hun, thanks, you are too xxx
Thank you for sharing this story! It certainly helps others and brings more awareness to chron's disease! It enables other to come out of their hiding spot and encourages them to see that not everything must be all pain. It shows that there are ways to continue living and enjoy life! You are one strong admirable woman and I am glad to have ran into you on Steemit!
Thanks @lymepoet, from one spoonie to another. Life sure knows how ro throw a good curve ball, its people that share that help others heal. Im glad I met another awesome advocate too.
Well, you look happy now and you deserve it. I hope you are over the bad things and up for good, indeed.
Thank you, we are over the worst off it now and only life left to live so better enjoy it. 😁
What does it mean that you "choose to go permanent and be a Barbie for life"? I recently learned that one of Matthew's relatives also had(has?) UC and has an ostemy bag. I never would have guessed!
Yeah, unless we tell people, no one would ever know. By going permanent I meant that they removed the rectum and sewed it up making it "my butt" like a barbie butt haha... or GI Joe or Ken if your a bloke. Haha.
Got it! I thought that's what you meant, but didn't want to assume. Modern medicine is so amazing! It seems like we can cure or fix just about anything. :-)
That’s pretty intense 😵 but things are awesome now right? 🙂
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It was but now it's not so winning!!! Btw, Thana saw Santa again but thia time no melt down just a high five and a concerned look haha.
I'm lucky enough not to be a sufferer, but know plenty who are. Thanks for sharing your story, glad you are enjoying life now. All the best
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Thank you, there are a lot of us out there. Its nice to hear it more talked about these days.
I didn't know that there was a C&C awareness week! The husband and I will have to get on it, clearly D:
i know we've talked about this before, but as the wife of someone who has Ulcerative Colitis, I can appreciate people who are willing to tell their stories - and yours is particularly dramatic in the sense of what you've had to go through. But that just shows how strong you are as a human, so keep on rocking it, lady, you're doing us all proud!
I didnt know it existed either until I started sharing and found others that were doing the same. Its the first week in December, so you have a while to get the story together to share. 😁 I look forward to reading it. I hope its not as dramatic as i would wish that on no one.
Wow, an almost half body weight loss in one year? That sounds horrific... I'm not totally sure what a j-pouch is, but I guess that is what you are showing off in first photo?
Somehow, the photos and the topic are a hilarious mismatch! You look so happy... to have Crohns & Colitis!
20kg of that was in a month, was skin and bones, even my muscles wasted away. Crazy....
Haha I know right, Insta doesn't like depressing images haha. Plus life now is good in spite of Colitis. Also i didnt take many photos when I was sick as I hated everything and never wanted it recorded. A mistake in hindsight but still the way I felt.
The j-pouch you would never see its internal. Theu make a J out of your small intestine to create a rectum of sorts to store pre toileting. It only works if not inflamed. Otherwise it's hell. The top photo is my Ostomy bag poking out .
What a story! You went through hell and it's amazing that you went over it and now you're smiling :)
Thank you, laughing through it all is one of the only ways to survive it.
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