#ibdfamily

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Surgery was a success! AND I got an item checked off of my bucket list today: Getting a video of how long I could stay awake before anesthesia got me. My surgeon has my cell number so I got him to take a video and send it to me. He's a good sport! πŸ˜‚πŸ˜‚πŸ˜‚
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#spoonie #spooniefamily #IAUIBD365 #IBD #IBDfamily #GERD #ulcerativecolitis #crohns #gastritis #jpouch #ovariancysts #anemia #portacath #powerport #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #jpouch #ileostomy #stoma #ostomy #surgery #girlswithguts

I can't even explain how much I love this picture and how awesome meg (@the_front_butt_youtuber) is. She's a great IBD and ostomy advocate and has had her fair share of illness but always a positive attitude. We also have Snapchat wars which are just next level. πŸ˜‰ #IBD #HealthEVoices17 #IBDFamily

Today was the last bag change with Sassy! Surgery is set for Thursday and I'll get the call for time tomorrow. Our current prayer is that I don't wake up with a new stoma to care for. I have to say as much as I dislike Sassy and all her responsibility, I will miss the joy she brought me! Yes, I said joy! For the first time in years I was able to eat out in public and not worry about the nearest bathroom. I was able to have and be company without having to embarrassingly excuse myself. I had no butthole pain!!! I also was able to do things like get my hair cut and colored, watch my son get his first haircut, and even sit through his baby dedication at church without missing anything for a bathroom break! It's the little things in life we take for granted and it's the bumps in the roads we don't see clearly. This is a major bump in the road for us as a family but I would be blind if I didn't see all the blessings it has brought so far. My family which includes both sets of parents are stronger and closer than ever. This has been like 1 giant trust trust fall in training! Without our parents this would be a giant fail! We appreciate you Rosie, Dianne, Kenny, and Jim you have been amazingly dependable, patient, and supportive! And can I just brag on Blake? For real, if you see my husband out and about shake that dudes hand. Blake has stepped up and been, mom/dad/husband/wife/best friend/medical assistant, you name it! I know I'm partial but my husband is THEE MAN! I love and appreciate you so so much @samuelblakerson. From cleaning the vomit the day before surgery to the projectile pooping after, I don't know a better man than yourself! #nocolonstillrollin #jpoucher #ileostomy #colectomy #ibdfamily #ostomyliving #ulcerativecolitis #supportsystemstrong #babeswithbags #ostomate #rockoutwithyourbagout

Best weekend with the best peopleβ€οΈβ€οΈπŸŽ‰πŸŽ‰ #ibdfamily

Thank you everyone for your thoughts and prayers for Jake. I'm overwhelmed with the amount of support he and I have received after making this huge decision for his health. This is a great thing for him and even though it will be a very long road, we can't wait to finish this year the strongest he's ever been and hopefully the healthiest he's ever felt! The J-Pouch surgery will be next Wednesday at the Mayo Clinic, so if you have room in your prayers, please keep them coming leading up and following! Any #colitis warriors out there? Who's had a successful j-pouch surgery?

Can you guess which picture was taken when my disease was flaring?
Spoiler alert: ALL OF THEM.

Inflammatory Bowel Disease (IBD) is often invisible. Sure, I could show you photos of me at my weakest, looking skinny in a hospital gown and needles in my arms. I have those photos too. But the point here is the general public knows little of our struggles because they cannot see them.
Pictures don't tell the true story and people with ulcerative colitis don't always look or act sick. πŸ’œMay 19 is World IBD Day - the perfect time to make our disease visible.

MOST RECENT

There will never be enough words, photos, or videos I could post to express how much every single one of you means to me. I find strength and courage through your supportive comments as well as confidence and humility. Thank you for sticking with me through every surgery and hospital stay and giving me hope and comfort when I feel like there isn't any. I'm so glad to have found this amazing spoonie community. Thank you for building me back up when I get knocked down. πŸ’œ
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#spoonie #spooniefamily #IAUIBD365 #IBD #IBDfamily #GERD #ulcerativecolitis #crohns #gastritis #jpouch #ovariancysts #anemia #portacath #powerport #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #jpouch #ileostomy #stoma #ostomy #surgery #girlswithguts

Surgery was a success! AND I got an item checked off of my bucket list today: Getting a video of how long I could stay awake before anesthesia got me. My surgeon has my cell number so I got him to take a video and send it to me. He's a good sport! πŸ˜‚πŸ˜‚πŸ˜‚
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#spoonie #spooniefamily #IAUIBD365 #IBD #IBDfamily #GERD #ulcerativecolitis #crohns #gastritis #jpouch #ovariancysts #anemia #portacath #powerport #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #jpouch #ileostomy #stoma #ostomy #surgery #girlswithguts

Guess who's having surgery tomorrow! πŸ™‹πŸ» It isn't the entire surgery because they need a bigger time slot, but my stoma is going to be redone since it's retracted completely. Hopefully, this ileostomy (my FIFTH one) will work like it should and it will be my permanent ileostomy. The other half of the surgery is removing my Jpouch and giving me a #BarbieButt - which takes more time. That surgery is still scheduled for July. Maybe I'll get in sooner......or maybe not. πŸ€·πŸ»β€β™€οΈ Either way, I'm happy my stoma is going to be fixed. And I think it's time I named it. I'm not sure why, but the name "Henry" stands out to me. Wish me luck tomorrow! πŸ’œ
(p.s. For those of you who have (or have had) ostomies, what did you name your stoma?)
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#spoonie #spooniefamily #IAUIBD365 #IBD #IBDfamily #GERD #ulcerativecolitis #crohns #gastritis #jpouch #ovariancysts #anemia #portacath #powerport #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #jpouch #ileostomy #stoma #ostomy #surgery #girlswithguts #buzzcutgirl #buzzcut #chronicallymotivated

I figured while I'm here, I might as well study. Doing 16 weeks worth of anatomy in 13 days wasn't the best for me. Now I'm studying chemistry on my own so I can pass the CLEP exam, get credit, and then apply to nursing school. β˜ΊπŸ“šπŸ₯ A brief hospital update: The resident came in this morning and was mostly focused on me being hydrated (I'm guessing they officially admitted me for dehydration), but my surgeon and his team know I'm here to hopefully get my surgery done sooner. I'll know more from rounds in several hours when I see all of my doctors. Until then, I'll be watching Dexter until I fall asleep! πŸ’‰
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#spoonie #spooniefamily #IAUIBD365 #IBD #IBDfamily #GERD #ulcerativecolitis #crohns #gastritis #jpouch #ovariancysts #anemia #portacath #powerport #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #jpouch #ileostomy #stoma #ostomy #surgery #girlswithguts

My permanent ileostomy surgery has been set for July 11th, but I got desperate a texted my surgeon. My skin is deteriorating around my non-existent stoma and I can't do this for another two months. So he gave me the option of being admitted and seeing if I could get my surgery done sooner. My cousin is a scheduling nurse in his office and I asked her how weekend admits work and that I decided to go on Sunday. She sent this back. Unbelievably grateful!! I just want this done and over with so I can move on with my life! Crossing my fingers I can get in surgery sooner! 😊πŸ₯ Happy (belated) World IBD Day to me! πŸ’œ
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#spoonie #spooniefamily #IAUIBD365 #IBD #IBDfamily #GERD #ulcerativecolitis #crohns #gastritis #jpouch #ovariancysts #anemia #portacath #powerport #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #jpouch #ileostomy #stoma #ostomy #surgery #girlswithguts

My birthday falls on the same day as #worldibdday every year, and just gives me all the more reason to celebrate another year of being alive, and I did just that with some lovely people yesterday. 3 years ago today I was being discharged from the hospital to start remicade. I had just received a blood transfusion after weeks of being unstable and I weighed 98 lbs. I wasn't strong enough to stand without the support of my IV pole or a shoulder. I am in remission now, I workout every day, and im stronger than I ever was physically and mentally. I fight for my care and manage this disease every day.
5 million people in the world have IBD, and that number is growing. While I still hope for a cure, my focus now is on improving patient treatment. Check out my blog post on my birthday wishes, and check out the #worldibdday hashtag to see how the rest of my #ibdfamily fights this. #flareuphope #ulcerativecolitis

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