amzuck - Tumblr blog

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Happy Halloween from these Ghouls #disneyvacation #familyvacay #familyvacation #halloween #halloweenmakeup (at Epcot - Walt Disney World)

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These are my angry eyes 👀. I don't know what is going on with my stoma this morning - I woke up in the middle of the night and then this morning to pouches full of just liquid, and it's still going on at an alarming rate. I have NO idea why though. I don't feel sick and am not in pain so I don't think it's a blockage. This happened at the hospital after one of my surgeries.... but I was hooked up to an IV then to keep up with the fluids I was losing. Any ideas anyone? . Because it was a bad night I set back my workout alarm and am just doing some stretches to get rid of the aches and pains from sleeping. My joints are bothering me a little - mainly in my hands/fingers... I don't think that's a Xeljanz side effect? Or my body is just fucked up from years of prednisone, antibiotics, and other harsh drugs 🤦‍♀️ #ileostomy #ileostomyproblems #ostomy #ostomybag #ostomate #crohns #crohnsdisease #crohnssucks #crohnsproblems

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Happy #OstomyAwarenessDay from my tummy to yours! ❤️ #crohnsdisease #crohnswarrior #ostomy #ostomybag #ostomyawareness #ostomyawarenessday2017 #ileostomy #ileostomybag #ostomate #ostomatestrong #ostomybadass

[amzuck]

Happy October Ostomates! #ostomyday2017 #ostomyawareness #ostomyawarenessday #ostomy #ostomybag #ileostomy #ileostomybag #pumpkincarving #crohnsdisease ##uoaaa

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Laying on the floor post yoga trying to get kitty to play with me. (She won't. She only wants to play when I'm busy 🙄) A year and a half ago an hour of yoga in a 90 degree room may have literally killed me, but today it makes me feel 💪💪 (And a bit sweaty. Hope I don't leave a body imprint on my carpet 😳). I got my hands on some Hollister convex two piece pouches. The design could be improved, but I've had this pouch on for three days and no leak - despite multiple showers, lifting, a sand volleyball tournament, and now a sweaty yoga sesh. I think maybe there's still a better system out there for me but I'm going to take a break from testing out samples for a bit. You can only deal with so many poo-splosions at a time 🤷‍♀️. I have a looooong time to find something that works and looks nice. Maybe I'll even take matters into my own hands 🤔 . #ileostomy #ileostomybag #ostomybag #crohns #permanentostomy #crohnslife

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QUESTION FOR MY FELLOW #ostomates What brand/product do you prefer? I'm rocking a #Hollister pouch right now and it's good ol' reliable. Small wafer, belly button has some breathing room, not a bad pouch.... but I wouldn't mind a better end closure. I'm trying it some #convatec #esteemsynergy two piece pouches. Liking the overall design more than the Hollister but the adhesive doesn't seem to be as reliable. I will give them credit for a decent bag design though, because most of their lines or hideous. #coloplast takes the cake pouch design wise, but sadly it seems my skin is allergic to their wafers :( Suggestions anyone? #ostomy #ostomate #ostomybag #ileostomy #ileostomybag #crohns #crohnsdisease #hollisterostomy #convatecostomy #nocolonstillrollin #ulcerativecolitis #ostomyawareness #ostomyadvice

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Or maybe don't? Lol. I know most people on here don't know my full story, and it's a long one... but here are the highlights: ▪️Hospitalized and diagnosed with severe Ulcerative Colitis while studying abroad my junior year of college (2011) ▪️Spent two years having every drug on the market thrown at me with no success and was dependent on prednisone to function. ▪️Went through the three surgeries for an ileoanal pouch (Jpouch) during my first year of grad school. ▪️My Jpouch never functioned quite properly. I had a permanent stricture and had to deal with multiple blockages and almost constant pouchitis (infection in the pouch). Switched out steroids for antibiotics. ▪️ My diagnosis was switched to Crohn's in mid 2015 following a scope that showed severe ulcers in the lower portion of my pouch and a perinanal fistula and abscess. No, I WAS NOT MISDIAGNOSED WITH UC. This is something that can happen with a very small percentage of people with very aggressive UC who never achieve remission. All of my blood work and my biopsies even still come back negative for Crohn's, but my surgeon tells me that the ulcers she found were textbook Crohn's ulcers. So, for me, saying Crohn's is just the simplest and easiest explanation. ▪️Surgery for a diverting ileostomy in June 2016 to try to help me get some strength/weight back and give my GI time to find a treatment plan for the Crohn's. Ended up TPN nutrition and eventually in the ICU in septic shock. ▪️ July 2017 Surgery to remove my Jpouch and make my ostomy permanent. I have lived more in the last year than I did in the past 6 combined and if a permanent ostomy is the price for that then I will very happily pay it. #jpouch #ileoanalpouch #ostomy #crohnsdisease #crohns #ulcerativecolitis #ibd #inflammatoryboweldisease #ibdstrong #thegreatbowelmovement #colectomy #tpn #sepsis #septicshock

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Let it be. . . #crohns #crohnsdisease #ulcerativecolitis #ileostomy #ostomy #ostomatestrong

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Kicking off Labor Day weekend by killing a HIIT workout. . . #fitness #ileostomy #ileostomyfitness

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I forgot I signed up for a 5k through work before I knew I was having surgery - but since the surgeon gave me the all clear I decided it was maybe the kick in the pants I needed to get back to running and being active. 3 miles, I probably walked about half, and came in just under 40 minutes. Not too bad (even though I got passed by a guy holding a baby 👶) . #ileostomy #crohns #crohnslife #crohnsandfitness #notjustanothercrohnsgirl #zuckoffcrohns

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One month follow up : all post op restrictions lifted 💪 My surgeons comments: "I think you know the drill by now." 🤷‍♀️

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FUN DAY TODAY. I was super pumped to try a #coloplast sample flex pouch. Sadly halfway through the morning I went to use the restroom and caught leak under the pouch starting. Made it home, changed my pouch, and back at my desk at work within 30 minutes. Thank god I caught it when I did or it would have been a really shitty situation 😂 I remember this type of leak happening occasionally when I used to try to wear Coloplast Mios... so I guess it's back to Hollister pouches. #crohns #crohnsdisease #crohnielife #ileostomy #ostomy #ostomybag #ostomyproblems

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Recovery life: eating a breakfast Sammie while everyone else loads the car. WHOOPS SORRY GUYS CAN'T LIFT OVER 10 POUNDS 🤷‍♀️ #crohns #postop

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Back to the grind - despite what the shirt says. No issues going back to work, no need to work reduced hours or half days or anything, not exhausted to the point of collapsing when I get home. Introducing AM workouts back into the routine - but keeping them shorter, using mostly body weight or equipment I have in my apartment. Right now I'm trying a 4 week #niketraining plan. Before settling in that I was glancing through different apps and plans and was overall disappointed. Finding plans aimed primarily at putting on muscle was difficult, everything is about losing weight and slimming down and "problem areas." Lets be less focused on tiny and more focused on strong. #crohns #crohnsdisease #crohnslife #recovery #ileostomy #workout

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Oh hey belly button, you've been trapped under adhesives for a hot minute haven't you? Trying out some sample pouches. Not 100% sold on this one yet, but nice to have a wafer that doesn't feel like it's sticking to my entire tummy 😳. My lil' belly button has been through a lot - it could use some air. #ostomy #ostomybag #ileostomy #ileostomybag #crohns #crohnsdisease #crohnie

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Always just over my shoulder. Fourth day in a row feeling good. Hopping on the treadmill soon (it's cloudy and depressing outside) to walk for a while and then do some stretches - no strenuous activity or lifting more than 10 pounds until my post op appointment. I've been off the narcotic pain meds for a few days now and am doing fine on Tylenol / ibuprofen. The only pain really bothering me is in my bum 🙈 we think she irritated the nerves and muscles when she was working down there but being more active actually helps a bit. Putting plans in motion to get back to my regularly scheduled life starting next week, barring any dramatic changes in my health. Shoutout to one of my best frans who gave up her weekend to hang out on my parents couch and binge watch TV with me ❤️Sometimes all you need is a buddy encouraging you to keep playing the next episode to make recovery seem better. • #crohns #crohnsdisease #ileostomy #ostomy #ileostomysurgery

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When you want snuggles so badly you're okay with bay walking all over your incisions before laying down 🤷‍♀️ Things have turned around in the last few days. Energy is up, appetite is up, mood is up, stamina is up. Fingers crossed it's a trend. #crohnsdisease #crohnie #ileostomy