The Patient Coach Program was designed to connect ostomy patients and provide support to help them transition into their new life with an ostomy. ♡youtu.be/BdYnvrWubn4

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When might someone need to get dilated? What is dilation? Patient Coach, Alyssa Zeldenrust, can answer all of these questions! . “I have severe Crohn’s Disease that especially manifests with strictures in my small bowel closest to my stoma. After a lot of trial and error, my medical team decided to involve interventional endoscopy and dilate my strictures regularly to keep my gut open. Before I started regular dilations, I was in the hospital frequently with bowel obstructions. . Bowel dilation is a procedure in which a doctor uses an endoscope and a balloon to slowly and gently stretch out narrowed parts of the intestine.The procedure is very similar to a colonoscopy under sedation, and the preparation is the same as a regular scope for an ileostomy. . My experience with dilation has been great because it enables me to eat a wider variety of foods without pain, stay out of the hospital for longer stretches of time, and postpone the need for surgery. Sometimes afterward I experience some pain, a little bleeding, and particularly fast output for a day or two. I go crazy with hunger the day before and I’m anxious every time, but overall I am so grateful to my doctors for making this part of my healthcare plan. . Do you have any questions for me about my experience? If you’ve also done bowel dilations, I would love to hear about your experiences!” -Alyssa Zeldenrust . . . #ostomy #dilation #ostomylife #patientcoach #patientcare #ostomysurgery #ostomyawareness #education #patientadvocacy #jpouchlife #ileostomybag #colostomybag #ostomysupport

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Sleeping with an ostomy is a new change, and there is a way to sleep comfortably. You just have to find it! . “When I learned that I needed an ostomy, thousands of thoughts flew through my mind – how was I supposed to sleep with a bag?! . I worried about my bag being ripped off in my sleep, being able to get comfortable, and of course having bag leaks in my bed (which has happened)! . Once I lived with my ostomy for a few weeks, my worries about sleeping with a bag slowly began to go away. I quickly learned how to adapt to sleeping with a bag, and what worked and did not work for me. . I thought that an ostomy meant I would be stuck wearing nightgowns, but that is not the case! I sleep in shorts almost every night. I just make sure to adjust the waistband so that it sits above my bag. . Thankfully, I am also able to lay in any position-even on my stomach! If you do this, just make sure that your bag isn’t full, or you could be in for a “not so delightful” treat! . I usually only get up once during the night, and that isn’t because of my ostomy output, but rather from gas that has collected in my bag. There is nothing worse than a bag explosion from gas. While getting up may be a pain, it is worth it!” -Meghan Brown, #patientcoach . How do you sleep with your ostomy? . . . #ostomy #patientcoach #ostomylife #patientexperience #jpouchlife #ostomybag #patientadvocacy #patienteducation #ostomysurgery #ostomyawareness #crohnsdisease #crohns

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Lets talk about J-Pouches and what it is like to live with one! . "The number one thing I have learned about J-Pouch surgery is that everyone's experience is different. You can take two patients with the same disease and same surgeon, and they will have very different experiences." . "I have been taken down twice."Unfortunately, surgical errors were made during my first J-Pouch creation. Three years later, I had to undergo three additional surgeries to resolve those issues.The first few months after being taken down were rough. It took my bowels about eight days to “wake up” and for me to pass gas. . That’s the milestone you are aiming towards after surgery. Once you can pass gas, you can start eating and typically leave the hospital within twenty-four hours. Using the bathroom ‘normally’ again after surgery isn’t really a ‘normal’ experience. At least not for me. . Gone are the days of solid bowel movements, and I haven’t had much luck getting the number of bowel movements I have per day below ten. I have personally not had too much trouble with leakage. That never happens to me during the day and rarely overnight. If I am worried about it, I will sleep with a thin pantyliner just in case, but I never need anything else. . I try not to eat anything at least three hours before bed. When it comes to dinner my motto is the earlier the better! I also struggle with chronic pouchitis, so my experience with a J-Pouch is on the tougher side of the spectrum. . I am not giving up hope, and I do have good pain free hours some days that I am hopeful I can build upon.” -Cody Maher, #patientcoach . . . #jpouch #surgery #patientcoach #ostomylife #patientadvocacy #recovery #jpouchlife #Ibd #crohns #crohnsandcolitis

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It’s Transformation Tuesday!! . “In 2014, my weight started to go down not long after a peristomal hernia repair surgery. After I dropped a whopping 35 pounds in just a few short months, I was sent out for testing. I was diagnosed with Gastroparesis, and the battle to keep my weight stable has been on since then." . It’s very conflicting to lose weight because I was essentially starving, but everyone around me kept telling me how good I looked. . While most people complain of gaining weights on trips, it’s very common for me to lose 5 pounds just on a weekend outing. . The more I eat, the worse I feel. A meal unwilling to leave my stomach for at least four hours at a time or longer leaves me feeling full, bloated, and unable to get down the hydration I need.” -Sierra Cabezas, #patientcoach . . . #ostomy #crohns #IBD #patientcare #patientexperience #patientexperienceweek #ostomylife #weightgain #weightlosstransformation #transformationtuesday

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Today we highlight a very special Patient Coach, Jearlean Taylor! . NAME: Jearlean Taylor . OSTOMY, J-POUCH, OR REVERSAL? Ostomy (colostomy & urostomy) . HOW LONG HAVE YOU HAD YOUR OSTOMY? 49 years . STATE: Maryland . FAVORITE HOBBY: Loves to travel, model, and spend time with family and friends. . WHAT’S ONE WORD THAT BEST DESCRIBES YOU AND WHY? "Dedicated. One of the attributes in being dedicated involves commitment. I love to take on different projects such as mentoring, working on special fashion projects, planning family events, or speaking to ostomates. My dedication means I care about whatever task is given to me. I am all in!" . Have you had your ostomy your whole life? What things have helped while coping with this? . . . #chronicillness #ostomy #ostomybag #IBD #crohns #colorectalcancer #patientadvocacy #ileostomy #patientexperience #doctors #nurses #ostomybag

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Kristen Furey would like to share what it’s like being the first Patient Coach and watching this amazing program grow! . “When I first started as a Patient Coach I had no idea what to expect or better yet develop this connection with other ostomy patients struggling and searching for someone who could be there for them in their journey as an ostomy patient. . So what did I do? I realized that what I was going through and what I have gone through, is the same thing that my patients are dealing with. I was there to listen, guide, and provide empathy whenever it was needed. . As time went on the program grew. We brought in new PC’s that I helped train and encourage and also guide them in their new journey they began at 11 Health. . Watching 11 Health grow and expand everyday is a privilege I get to be a part of. I’m thankful everyday to be given this amazing opportunity to support patients, help train and develop the Patient Coach Program, as well as run the PC social media. . Hard work, time, and love is what has built this program to what it is today! We would be nowhere without the head of the program, Karen Solis, the best boss a person could ask for, the 11 Heath family, and most importantly YOU. . When we say you’re not alone, we mean it. Message us on our Instagram, Facebook, or Twitter and we WILL answer and we will be there to listen and support you. I will make sure of it!” -Kristen Furey 💜💜 . What are you proud to be a part of in your life? . . . #patientcoach #11health #careplatform #ostomy #ostomylife #ostomybag #ileostomybag #stoma #patientadvocacy #crohnsdisease #patientexperience

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What is a hernia? Why might a person get one after ostomy surgery? Patient Coach, Corwin Crandell, has a story about when he got his first hernia! . “I found out I had my first hernia several years ago, about 2 years after my surgeon took down my first ileostomy and connected my J-Pouch. This was back in 2002-2003 so things I would think, have changed since then; in terms of how it was handled. . It wasn’t operated on initially but it was affecting my quality of life. . One big tip from my perspective about getting anything corrected surgically in the United States, there are so many variables involved, things that are difficult to understand unless you are directly involved in the surgical process other than being the patient. . I had a great doctor, well respected and highly suggested as a general surgeon. I had to fight any negative thoughts like my “doctors didn’t care”, or “I was being treated unfairly” because, I wasn’t fully aware of the process. . So back to my tip, ‘Try not to get so frustrated with your medical team, odds are they are doing their best in a system that is difficult to maneuver’. . It’s best to spend all your energy on being positive, it will make a huge difference! . I have a hernia now, it hasn’t been corrected, since it doesn’t bother me like the first one did. I get around well without too much trouble, of course there is the occasional pain sensation if I overdo it, but I am well taken care of by a great surgeon. . If you think you have a hernia be sure to tell you doctor, regardless of whether you need surgery it should be monitored by a medical professional.” -Corwin Crandell, #patientcoach . Have you ever had a hernia? Share you story with us! . . . #hernia #surgery #ostomy #patientexperience #IBD #crohnsdisease #stoma #stomabag #ostomylife #herniarepair #recovery #colorectalsurgery

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“A Letter to Myself Early in my Diagnosis . Kristen, I know you are scared right now and I know it feels like your world is crashing in around you. But I want you to know that you are stronger than you realize, braver than you believe, and that you will overcome everything that is thrown your way. Have patience with yourself, ask your friends for support, and allow your family to help you in this very vulnerable time. You do not have to fight this alone. . Do not let the darkness change who you are. Let your light shine through and cast away the shadows. Be the light. You are going to feel lost and you are going to feel like giving up. Keep going. There is a plan for you out there and one day, you will understand the reason why you were dealt these cards. . Shine bright, little warrior. You’ve got this.” -Kristen Cosner . What is something you would’ve wanted to tell yourself before surgery? . . . #ostomy #crohns #ulcerativecolitis #patientexperience #chronicillness #ibdawareness #stoma #chronicpain #surgery #recovery

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“After a busy, tiring day, I always look forward to a longggggg hot shower! . Some people might ask: Do you shower with your bag on? How do you keep it dry? Do you have to keep it dry? I’m here to tell you …you can do whatever you’d like! . I’m a water gal! I love to swim, go to the #beach, hot tub, shower, take long baths and I’ve even been known to dance in the rain – my #ostomy doesn’t stop me from enjoying any of those activities! . Personally, I shower with my bag on most days. I don’t do anything special – it gets wet. It dries. Or if I’m in a hurry I just dry it with my hairdryer on a low speed/heat setting. Easy peasy! Sometimes, if I know I will be changing my bag right after my shower, I simply shower with it off and give my peristomal skin a nice little break. . If you prefer to keep your bag dry while you shower you can always use Glad Press n’ Seal wrap, or Saran Wrap and water proof tape to make a little waterproof pocket against your skin. Another tip I’ve heard is to wrap a disposable shower cap around the bag portion! I love a good ostomy life hack!” -Danielle Gulden, #patientcoach . Do you shower with your bag on or off? What tips and tricks do you have to keep your bag dry while showering? . . . #ibdwarrior #ibdawareness #ostomybag #chronicillness #nocolon #colorectalcancer #gastroenterology #chronicpain #patientexperience #patientcare

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#TransformationTuesday! 💜 . Many patients think that after receiving an ostomy, it means it’s the end of the line for being active and continuing the physical activities they once loved! This is not always the case! . “Prior to my ostomy surgery, I was really active in my practice of capoeira, a movement-based art form encompassing martial arts, dance, music and more. My favorite parts of it were the cartwheels and bendy movements that I got to do. . Sitting in my hospital bed discussing my future with my doctors, my focus was on whether I’d be able to practice capoeira, and cartwheels again. In the depths of my ulcerative colitis flares I was too weak to walk more than 10ft and I was open to having ostomy surgery if it meant I’d be able to be active, strong and feel well again. . The doctors assured me that yes, I would be able to be active and do cartwheels once I was healed, so off I went to the OR to have my colon removed. They were right, but my healing process was one that involved a transformation transcending just my physical body. . Rebuilding my strength and confidence in my body taught me patience and persistence. It was a slow, intentional process for me. I became acutely aware of how my thoughts shaped my experiences, so I tried to look for the positives as often as I could remember. . It took me a lot longer for me to feel comfortable cartwheeling again than I had expected, but I got there. With my ostomy journey and those cartwheels, came a more confident, active, healthier, vibrant, and happier woman.” – Karin Camposagrado, #patientcoach . Did you have worries or questions about what your body would be able to do with an ostomy? What were they? . . . #ostomylife #ostomyawareness #ostomybag #activelifestyle #capoeira #activity #nocolon #chronicpain #chronicillness #gastroenterology #crohns #crohnsdisease #IBD

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Happy Monday Warriors!! We have returned to highlight another one of our amazing Patient Coaches! . NAME- Ryan Stevens. . #OSTOMY, J-POUCH, OR REVERSAL? I have had four ostomy surgeries. I currently have a permanent End #Ileostomy. . HOW LONG HAVE YOU HAD YOUR OSTOMY? The last surgery I had was December of 2016 when I received my permanent ileostomy. . STATE- I live in Ohio. Which according to our license plates is, “The Heart of it All.” . FAVORITE HOBBY- I love swimming. I swam in college and currently am training for Ironman Wisconsin. . WHAT’S ONE WORD THAT BEST DESCRIBES YOU AND WHY? Undefeated. It has been ten long years living with Crohn’s. I have had nine surgeries. Every day I get up and give it my best. . Closing-Questions What makes you undefeated when it comes to your illness? . . . #ostomylife #ostomyawareness #stoma #chronicillness #patientexperience #ibd #patientcoach #swimmer #triathlon #ironman #athlete

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Getting to know our Patient Coaches has been amazing within our close knit family! Now we can share with you our stories and our hope is that you can relate as a patient and warrior! . NAME- Rhonda Hayes . OSTOMY, J-POUCH, OR REVERSAL? Permanent Ileostomy . HOW LONG HAVE YOU HAD YOUR OSTOMY? 43 years . STATE- North Carolina . FAVORITE HOBBY- Yoga . WHAT’S ONE WORD THAT BEST DESCRIBES YOU AND WHY? Happy. I always look on the bright side of things. I try to turn negatives into positives. I love the sun, the clouds, the rain and the snow. So no matter what the day brings, I will be happy.” -Rhonda Hayes, #patientcoach . Rhonda's favorite hobby is Yoga! What is your favorite hobby? . . . #ostomy #ostomyawareness #ibd #chronicillness #ibdwarriors #nocolonstillrollin #spoonie #crohnsdisease #coloncancer #vatersyndrome #fap

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As patients one of the most important things you can do is learn how to advocate for yourself! . "When you have a complicated medical history, it’s especially important to be prepared to advocate for yourself so you stay as safe and comfortable as possible. . Anemia was already significantly interfering with my ability to function, but I had to go to the hospital because of some nasty bleeding and was in bad enough condition that I got to skip the extremely long waiting room time. A few nurses and docs who know me suggested I needed a blood transfusion and iron infusions, but making that happen was more difficult than I anticipated. . I had a whole list of talking points but even though I kept bringing the subject to everyone’s attention, nobody was taking me seriously enough. They kept shrugging their shoulders and hiding behind bureaucracy instead of listening and trying to find creative ways to help.  Then I found a doctor who heard me out and wanted to assist me however she could. She ordered a blood transfusion and multiple iron infusions. I know I still have a long recovery ahead but at least now I feel like I am going in the right direction. . I refused to accept being extremely weak going forward in my life as my body deteriorated. I have my handy little medical notebook all the time, and I try to make notes of arguments that contradict my own to see where others are coming from. I keep notes, medication dosages, and questions accessible so I can get to the best possible results from my medical team. . Advocating for myself is exhausting and constantly defending myself against ignorant medical professionals who don’t seem to want to know my circumstances is upsetting. I want my medical teams to offer new ideas. I get so deeply discouraged when they see solutions for my problems but won’t follow through for a variety of reasons. But I keep trying, I keep using my notes to help me out, recruit moral support when necessary, and sometimes persistence wins. . If you ever need help learning more about advocating for yourself or your loved ones, please feel free to reach out to any of our wonderful patient coach team!”-Alyssa Zeldenrust, #patientcoach

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Health update from the wonderful Patient Coach, Christine Joyce. . “Possible stricture near the prior resection site.” . “That’s what the CT scan read after my recent visit to the local ER. I had been feeling pressure on my left side for a while, but it seemed fixable and it wasn’t always consistent. I took fiber everyday and I drank a lot of water too. I was even back to eating small salads again. . A previous fistula and stricture caused by diverticulitis was how this whole mess started for me a couple years ago. After surgery to remove the stricture, I was feeling pretty hopeful that, I was “fixed,” and that with careful attention to diet and adequate hydration, I was ready to get back to my life. . How could there be another stricture? . This time, that “pressure” I had been feeling turned into pain. . Real pain. . I was suddenly constipated and unable to pass gas for more than 24 hours. I truly had never felt so miserable and so much unrelenting pain…not even when I gave birth! . So now, instead of preparing for a large incisional hernia repair that is still scheduled for the end of March, I am getting ready for a colonoscopy so that my surgeon can see exactly what is going on. Better yet, if the stricture is fixable without another surgery.” -Christine Joyce, #patientcoach . Have you ever had issues with a structure? Do you have Diverticulitis? . . . #ostomy #ostomylife #crohnsdisease #patientlife #spoonie #chronicillness #ibd #prednisone #nurse #ostomyawareness #familialadenomatouspolyposis #ulcerativecolitis #potssyndrome #ileostomy #healthstory #ibd #ibdawareness #supportgroup #coloncancer #rectalcancer #cancerawareness #bowelcancer

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We have a very exciting transformation to share today featuring Patient Coach and Technical Support, Corwin Crandell! . ”Often times when I talk about my diagnosis or my journey through treatment and my continued recovery, I usually reference my ups and downs as seasons. . I am reminded of an old song and a verse in the Bible, ‘To everything there is a season, and a time to every purpose’ to roughly quote the old song ‘Turn! Turn! Turn!’ by The Byrds you can find the entire verse in Ecclesiastes 3:1. . That is what “transformation” has meant to me. My first and most traumatic transformation being December 4th 2001, to the latest January 31st 2018 occurred when Maggie Baldwin the Patient Champion Coordinator (previously) replied to a random email I sent to her asking about 11 Health’s Patient Champion program. Today we call it the Patient Coach Program and Maggie is our Nurse Manager for the Nurses Program. . So much has happened since then. 11 Health not only gave me a purpose, they changed my life. Through all of this my health has dramatically transformed. . I am doing better today than I had been in the previous 18 years. This is the latest chapter, or season, of my journey and by no means the end of this story. I have provided 2 images in this post, before 11 Health and now. I still have a chronic illness, but I like my new picture much more!” -Corwin Crandell . What does your transformation look like to you? How has it changed you? . . . #ostomy #ostomylife #crohnsdisease #patientlife #spoonie #chronicillness #ibd #prednisone #nurse #ostomyawareness #familialadenomatouspolyposis #ulcerativecolitis #potssyndrome #ileostomy #healthstory #ibd #ibdawareness #supportgroup #coloncancer #rectalcancer #cancerawareness #bowelcancer

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