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 your story, gosh and then I complain about having a queezy tummy once in a blue moon!
I still do now haha, but headaches and toothaches are also a pet peeve. 😁 thanks for stopping by.
Congratulations! This post has been upvoted from the communal account, @minnowsupport, by insideoutlet from the Minnow Support Project. It's a witness project run by aggroed, ausbitbank, teamsteem, someguy123, neoxian, followbtcnews, and netuoso. The goal is to help Steemit grow by supporting Minnows. Please find us at the Peace, Abundance, and Liberty Network (PALnet) Discord Channel. It's a completely public and open space to all members of the Steemit community who voluntarily choose to be there.
If you would like to delegate to the Minnow Support Project you can do so by clicking on the following links: 50SP, 100SP, 250SP, 500SP, 1000SP, 5000SP.
Be sure to leave at least 50SP undelegated on your account.
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? 🙂
Posted using Partiko iOS
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
Posted using Partiko Android
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.
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.
My dad also has crohns. And my son-in-law has colitis. Neither is a cakewalk. Thanks for sharing your story. I hope better days are ahead for you.
Life is good now. Just had some tramatic rides in the middle. Both have there shite moments thats for sure. Thanks for stopping by 😁
Hi insideoutlet !
After approximatively 48 hours, your post has 1.333 of pending rewards.
To compensate the fact that @share2steem is taking a fee on your posts, please allow us to upvote you via @tipu.
Our fee : 0.133
Value of votes you got from S2S trails : 0.026
Value to compensate : 0.054 (this amount has been lowered by 50% as you're not in any S2S Curation Trail)
Join both Curation Trails on the website (in Settings) to be compensated 100% on your future posts.
!tipuvote 0.054
For the latest news about the Share2Steem application, visit our @share2steem profile.
See you soon on https://www.share2steem.com
This message is generated automatically.
This post is supported by $0.05 @tipU upvote funded by @share2steem :)
@tipU voting service guide | For investors.
Great to read your story. I'm adding doing mine to my list, but I'm struggling with my health lately, which has stopped me from posting as much. I will get there, but it probably won't be during the awareness week, not that I've ever been one to stick to specific days/weeks for awareness anyway :)
Any awareness is good awareness regardless of date or time. Im sorry you have been struggling of late. Ive not been very active either. Im using #share2steem atm which is helping me post a little.
You have a new fan.
Where in steem have you been hiding!!
The random discovery of gems hiding in steem amazes me. Am I doing it wrong still? I wish it was easier to find people like you.
I am on a road to finding answers to some health problems. Issues that have crept on, but to me feel still acute, to the health system I'm chronic, and too complex to be any specialities priority. Not least of my issues, but not isolated is GI problems. While I try to work things out I am losing my function, health, ability to do anything. My life is slipping away, and each intervention seems to impact another part of my health (negatively) further complicating and confusing the picture.
I have recently come under the care of a gastro doctor who is taking the time to work through things and also is not scared of, in fact he is informed about my other problems. I see you not just enjoying life but advocating and embracing your circumstance and I have hope. Please don't stop posting. The good the bad the mundane of your life is what I am fighting for. At the moment my family are in the process of moving (Saturday is our big moving day), to be near to my mother. She has been an integral part of caring for my kids and me, and supporting my husband.
I read that your sister and niece moved in when you were sick. Our move, the loss of "friends " and colleagues, has taught me so much about what is important.
Stay awesome. Don't stop talking about your life, your words are important and impactful. Impacted, there's a word that I unintentionally stumbled upon, but perhaps it's mention is enough to convey a dimension of my process at this juncture.
I am facing some big decisions. If I believed in divine things, then you have been sent to me at this time.
What!? So glad you're so much better! I guess I can stop feeling low about my own pains!!:)
Posted using Partiko Android