TODAY MARKS 1 YEAR since my #totalcolectomy At 9 am my doctor rushed into my #ICU room saying we had to take me into surgery because my colon was going to rupture at any moment. We had just gotten that morning’s scans back and there was no time to waste. That surgery not only saved my life, but changed it for the better. I have learned to appreciate myself and all that my body can do. I’ve learned to love a little harder. & lastly, I’ve found my calling in life through this surgery.. helping others go through this same experience! I truly can’t believe it’s been a year already and I’m emotional just thinking about where this next year will take me. #ulcerativecolitis#warrior#nocolonstillrollin#rollincolon#colectomy#ileostomy#ostomybag#invisibleillness#crohns
Helloooooo IBD family! About 2 months ago my broski ( @cer_koplan_ the curly headed doofus in the pic) was diagnosed with Crohns and we needed your help! He’s looking for any diet tips ideas for mild symptoms and things you all have done to help alleviate your symptoms. He’s on maintenance meds at the moment, luckily that is all that he is needing and want to see if any special dietary changes will help his body heal. I know every case is different but if there were any things you have done that you’re willing to share we appreciate it. He’s new to the IBD community and any words of wisdom are also appreciated! Thanks frands!!!
Happy Valentine’s Day! ❤️💕 This is the most I’ve gotten ready in weeks 😅 hairs a mess but face makeup, eyebrows AND mascara, look out!
2 455:21 AM Feb 15, 2018
Was going through photos last night and found the one on the left which was 2 days before my total colectomy. I couldn’t recognize myself for a second. I was so miserable for so long and forgot who I was. This disease made me feel like two different people which looking back, it’s true. My experiences have changed me and shaped me and I can’t ever imagine going back to the girl on the left.
5 1326:45 PM Feb 10, 2018
On Tuesday, I had the majority of my colon removed (marked in red). This isn't something I would normally share on social media (talking about intestines makes many uncomfortable 🤷🏽♀️), but IG was the most helpful in connecting me with other people in the same situation so here I go.
I've had Crohn's disease officially for 14 years. In my yearly scopes, it was discovered that I also have polyps. Hundreds of them. All precancerous. It got to the point that removing them all via colonoscopy was no longer possible. All genetic testing has been negative for #FAP, but that's how it's behaving.
We took a chance in leaving a portion of my sigmoid & rectum. The polyps could move there. Crohn's could move there. I'll have yearly monitoring forever so I figured I'd take a chance on some, hopefully, day-to-day normalcy.
I'm not sure what the future holds yet, but for now, this part is behind me. I'm ready to go home & heal. I miss my girls & I haven't eaten much since Sunday which makes me that much more grouchy when the nurse says "good morning!" to me at 4:15am. 😑😑 Any questions, I'm an open book. ❤️ #nocolonstillrollin#familialadenomatouspolyposis#ileorectalanastomosis#totalcolectomy#subtotalcolectomy#crohnsdisease#crohns#invisibleillness
18 2410:10 AM Feb 9, 2018
Hello homies! So I’ve officially launched my team shirts for this years @ccfa Take Steps Tempe walk in April! Thought all you thugs would appreciate the team shirts, link will be in my bio and a profit of the shirt sales will go towards my team goal of $2,000. Feel free and snag one in either of the three colors (or all😉) and spread the word! $20/shirt.
I’ve never been one for New Years resolutions but this year I decided to get my shit back together. I’m also not one to post about dieting and weight-loss but like I’m really proud of myself so fight me. On January 2nd, I decided to change up my diet, go back to tracking my meals and haven’t looked back. Having an #ostomy has created dietary issues for me, specifically I have issues digesting anything super high in fiber. So that makes “dieting” pretty difficult and annoying because all of the token health foods like salads and leafy greens will throw me back into in-patient. So I decided to follow a #ketogenic diet which allows higher fat and low carb. Over the past month I’ve gone down 18.25 inches overall which is pretty fucking mind blowing if you ask me(and I look at my intestines at least once a week so I’ve got high standards when it comes to having my mind blown). So here’s my humble brag, if you don’t like it, sue me, or try to sabotage my heavy whipping cream doused coffee, whatever you need you petty sloths😉. Okay. Back to your Wednesday!! Do you guys follow any special diets with your stoma-homies??
swipe👉🏼 for a stoma view all up in your grill. Or just enjoy this nice closeup of Gilbert Gottfried all up in your grill😂
Did my change Friday and noticed the skin just on the edge of the stoma seemed a bit more raw than usual. Maybe it’s because I went too long between changes? Any tips for if that sucker is still there the next go around? (The barrier wipes and powders always stop the water from adhering so I usually stray away from those)
my little life saver right now. I tried to talk to them about overnight pain management, and it somehow got missed. I can't even breathe without wanting to cry. And I went to bed in no pain at all. Literally zero. But when I spend hours in a cold room, on a hard bed, not moving at all. Everything hurts when I wake up, especially because I'm only on the pain pump. So when I sleep through pushing the button.... #totalcolectomy#ostomy#ulcerativecolitis#gimmeallthemeds
Little did I know that a week after I took this photo I’d be transferred to a bigger hospital and have an emergency surgery to save my life.
During this hospital admission, I was there 3 weeks, receiving blood transfusions ever other day & on a lot of pain medication.
My mom saw how much I was deteriorating and kept speaking up on my behalf as I was so weak.
I then got transferred to Mt.Sinai hospital in Toronto, had a CT scan that night and was in surgery 2 hours later!! They told me I wouldn’t have survived another day, & would have died in the other hospital I was at. I stayed at Mt.Sinai for another few weeks after my surgery and was also on TPN.
Welp it's been a minute since I have updated my UC Insta. These are recent shots of the past couple of weeks. I'll upload more explaining all that has gone on since I last posted. Right now I'm in the hospital to keep me stable & strong for my total colectomy coming up at the end of Jan. I have this separate account to connect with other IBD peeps but for some of you, all of this might be repeat. Sorry if so. And I totally won't be offended if you unfollow this one cuz it's more about UC & less about my frickin cute fam. 😊 #ulcerativecolitis#ibd#totalcolectomy
4 137:39 AM Jan 20, 2018
I was diagnosed with Crohn’s Disease and then Ulcerative Colitis in 2003, when I was 12 years old.
After what felt like years of trial and error, stomach aches and cramping, and blood loss and anaemia, I had a resection to remove an inch of my lower bowel in 2006. I experienced several flare ups and many side effects to medications in the years to follow, but also fell proudly into remission for some time.
In late 2015, my body began to attack itself, rejecting all nutrition and any treatment I was given. My body ached from head to toe, I very quickly became malnourished and my knees would buckle at any time. Within 8 weeks, I severely deteriorated and went into emergency surgery to have my large intestine removed.
With absolutely no desire to undergo this procedure, it became the scariest time of my life. I was hella confused, but I remained positive and hopeful. The option to have a reversal is there for me, meaning that having medical equipment attached to my tummy won’t necessarily be a permanent thing. However, I am taking a moment for now, to love myself, be proud of all the progress I have made and remind myself that everyday is a positive blessing and a second chance at life.
It hasn’t all been easy, but if I have learnt anything, it’s that life isn’t about what you lose, but what you gain. Having an ileostomy has greatly improved my quality of life and I believe it has given me a purpose to share my journey. 🤸🏼♀️
Repost @colitisninja#IBDHorrors - this is Amber showing off her stomach right before she was heading for her first #surgery for #ulcerativecolitis. She mentions how scared she was because.. well.. How can you not be worried about having a vital organ removed?! Her #scars and all of our scars will forever remind us of the #trauma we have faced. But, it is also a sign of strength. Many of us have been through the mill and yet, WE ARE STILL STANDING! Never forget how strong you are my #IBDFamily. We need to share these experiences so others realize they aren't alone. Anyone else have a photo of them during a difficult time and want to share what was going through their head/heart? Be sure to use #ibdhorrors so Amber and I can find it and share it all over to help raise more #IBDawareness. This project/campaign is not meant to scare people... but rather, reach those that are struggling with challenges that they aren't sure they will be able to get through. We want to show others they can and will get through these insanely difficult battles ... with the right #support & #love, we are all much stronger. And knowing other people out there understand you makes a world of difference! Share your story. Help others know they aren't alone. #IBD#crohns#inflammatoryboweldisease#autoimmune#chronicillness#invisibleillness#health#challenges#hospital#surgery#colectomy#totalcolectomy#nocolon#share#experiences#notalone