1. NEW VIDEO: My DryPro PICC Protector Review

    Not sure what is up with the volume issue in this video but my apologies. 

  2. #flashbackfriday

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    #flashbackfriday An Ariel view of part of EMU’s campus.

    Coming across this picture just made me think of some of the most difficult times in my life. If you look to the top middle of this picture you will see a cluster of 3 tall brown and tan buildings. One of those was the dorm that I lived in while I was dying. 

    No really, that wasn’t just a dramatic statement. This was all before this blog existed. The Sara that you know today was a very alone Sara back then. I didn’t know anyone else in my life who had Crohn’s disease or ulcerative colitis and I didn’t go on the internet looking. Facebook pages and blogs about IBD were few and far between and not all that great if you could find one. I was embarrassed and trying to hide my disease from everyone, I felt like I was carrying around this big secret and I was scared to show my true self. Everything became lies or trying to cover things up. I had stopped going to the majority of my classes but I didn’t want to tell anyone. I thought about the money it cost for that semester and how I just stopped going to the classes so I would fail them, ruin my GPA, and be put on academic probation. I didn’t want my parents to know and I didn’t want my friends, who were so smart, to know that I was a failure. I was in a relationship and because most of my nights were plagued by severe pain and because at this time I still had my large intestine that was bleeding so bad I spent most of my time in the bathroom losing blood, all I did was wish that I had my dorm room to myself. Get out. I want to be alone. I don’t want anyone around me. A lot of fighting occured. 

    I experienced things about my disease so embarrassing that I would never speak a word of it to anyone. Everything was me - going through so much - and going through it alone because I didn’t want anyone to know. The isolation that I put myself through back then is a huge part of why I created this blog. I wanted to help others who knew what that felt like so that they wouldn’t have to go through it alone. How I wish I had a blog like this to read back then. 

    I still do not understand how I managed to make it to the end of winter semester that year. I didn’t make it… I slowly stopped going to my classes. The only class I did go to was a class that I was taking for fun and filled one of my requirements - tap class. I went because I loved it and because the teacher often had me teach the class when she could not be there. It was difficult just to make the walk from my dorm to that class on the other side of campus. I stopped spending so much time with my friends and usually the only time I would see them anymore was Tuesday nights where we all held a position for a campus organization. 

    I was on high doses of prednisone, taking a ton of asocol, and the worst, I had to do mesalamine enemas at night. Winter semester ended in May and not even two months later I was hospitalized and having my surgeries. I received blood transfusions right away, even higher doses of steroids through IV, I was put on TPN and total bowel rest, and then my first surgery came. How I even managed to stick around EMU at all is still a mystery to me. I was so sick, I knew I was sick, but I had no idea I was that close to the edge. 

    When I “flashback” to my time spent at EMU I think about how it wasn’t really that long ago, but I have changed so much. I am here, I have a voice, I can now talk about it. So much of the burden of living with this disease has been lifted because I found my voice and I share it with you. I have made friends on the internet and in real life who get it, and that is what gets me through this. 

  3. #TBT  The Crohn’s (Cup) Song!  One time I wrote a song and I sang I really really poorly…

    I had an appointment with my GI

    Usin’ the bathroom 20 times a day

    I’ve got pain, I’ve got blood loss, feelin’ so fatigued 

    and I bought stock in Charmin yesterday

    I have Crohn’s 

    I have Crohn’s 

    Some friends I have have colitis 

    Steroids make my face round

    And my colon is gone, oh

    All just because I have Crohn’s 

    I have Crohn’s

    I have Crohn’s 

    Some friends I have have colitis

    I’ve had a perforated bowel

    I’ve got pills that I can’t swallow, oh 

    All just because I have Crohn’s 

    I had an appointment with my surgeon

    He said I have news for you

    You’ve got a blockage and an abscess

    And possibly a fistula

    I’m gonna have to operate on you 

    I have Crohn’s 

    I have Crohn’s 

    Some friends of mine have colitis

    The hospital has a wing named after me

    I once had a temp ostomy

    But Crohn’s disease is what makes me me

    I have Crohn’s

    I have Crohn’s 

    Some friends of mine have colitis

    Steroids make my face round

    And my colon is gone, oh

    All just because I have Crohn’s 

    I have Crohn’s

    I have Crohn’s 

    Some friends of mine have colitis

    I’ve had a perforated bowel

    I’ve got pills that I can’t swallow, oh 

    All just because I have Crohn’s

  4. It’s Thought Thursday! Here are my thoughts. 

  5. Do you crave salt? If I could salt this blog I would!

    One of the most awkward situations for me when I am eating in front of others is the salt shaker. Speaking of salt shakers I am obsessed with pep art. Google it!

    I salt my pizza, my soup, my fruit, my cottage cheese, MY CHEESE. You name it, I salt it. 

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    One of my best friends in this whole world sent me this text a few days ago. She also has a j-pouch and she experiences the same cravings for salt, delicious delicious salt. Same with Marisa who most of you know, who lives with an ostomy and shares our affection for the tasty white crystals sent from heaven. In fact, most of my friends living without their colons crave salt. I have even called some of you my “salt sisters” - you know who you are. ;) 

    Why do we crave salt? We all know we can live without our large intestine (aka colon) because here I sit writing this to you without it. The small intestine is responsible for absorbing the majority of our nutrients and then once everything enters the large intestine it absorbs water, sodium, and some fat soluable vitimins. Basically the colon absorbs water and some electrolytes from remaining indigestible food and then turns it into waste to be discarded, well, do I really need to tell you how? 

    Dehydration and electrolytes: Those of us missing our colons are at risk for dehydration and electrolyte imbalance but so are many of you who still have your colons but experience dehydration and electrolyte imbalance because of Crohn’s disease or ulcerative colitis. This can occur because of malabsorption, diarrhea, vomiting, and some medications. 

    Electrolytes are in the blood, urine, and body fluids and you get them through the food you eat and the fluids you drink. Calcium, potassium, chlorine, phosphate, magnesium, and sodium are all electrolytes. Electrolytes can become too low when the amount of water in your body changes - which can happen because of dehydration.  Those of us missing our colons or with compromised digestive systems are at risk for dehydration and therefore electrolyte imbalance. 

    Why are these electrolytes important? Well, they’re not just important, they are vital! Did you know that death can result from a severe electrolyte imbalance? Our bodies need to keep fluid levels from varying too much to function properly and sodium is a key electrolyte regarding our fluids. 

    The good news: For most people the amount of salt I eat would not be a good thing, but lucky me - my doctors have said, “Hey girl, hey! You keep that salt intake just the way it is!” Okay, they didn’t use the phrase hey girl, hey!

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    But because dehydration is something I experience often I am able to keep enjoying all my salty foods. I once was told after my millionth or so very low blood pressure reading that I should eat more salt and I just sat there laughing to myself thinking if you only knew how much salt I already eat…

    So keep those fluids and electrolytes in balance. There are even drinks out there with electrolytes in them. I once knew a doctor who prescribed pickle juice. 

    Now shake it like a salt shaker!

    P.S. Click this: https://www.youtube.com/watch?v=4b3IEmvM3l0

  6. Don’t forget to follow me on instagram for some very serious always normal pictures. This was yesterday evening on the way to some friends house for our weekly TV show watching party. Ru Paul’s Drag Race is what’s up people. I’m addicted. I was infusing TPN on the way. 
Now sissy that walk! I can’t stop. 
    Don’t forget to follow me on instagram for some very serious always normal pictures. This was yesterday evening on the way to some friends house for our weekly TV show watching party. Ru Paul’s Drag Race is what’s up people. I’m addicted. I was infusing TPN on the way. 
Now sissy that walk! I can’t stop. 
    Don’t forget to follow me on instagram for some very serious always normal pictures. This was yesterday evening on the way to some friends house for our weekly TV show watching party. Ru Paul’s Drag Race is what’s up people. I’m addicted. I was infusing TPN on the way. 
Now sissy that walk! I can’t stop. 

    Don’t forget to follow me on instagram for some very serious always normal pictures. This was yesterday evening on the way to some friends house for our weekly TV show watching party. Ru Paul’s Drag Race is what’s up people. I’m addicted. I was infusing TPN on the way. 

    Now sissy that walk! I can’t stop. 

  7. If there is a heaven and heaven is healthy, and there is a hell and hell is the hospital, I feel like I’m stuck in purgatory right now.

    Konichiwa my blueberries,

    It is time to continue the story of my most recent hospitalization. If you missed the first three parts just scroll down. Since I just posted my video on doing TPN from home I thought now would be the perfect time to talk more about that and recovery at home in general. Plus I’ve included loads of pictures! 

    I have been on TPN many times throughout the years and TPN is used for many different reasons. It is used for patients with short gut who are unable to absorb most of their nutrients through eating, it can be used for patients who have Crohn’s disease of the small bowel and are also unable to absorb enough nutrients. It can be used for patients with IBD who need to rest the bowel. Ulceration and inflammation can be very painful and often irritated by anything passing through, so sometimes a patient is put on total bowel rest and uses TPN for a short time. Some patients with a fistula will need to use TPN while it heals and some patients with strictures or blockages are also put on TPN. Many patients with motility disorders use TPN as well as patients with cancer and patients with other diseases or disorders. These are just some of the reasons that a patient would need TPN. 

    Some people will be on TPN permanently and others are able to come off of it, and some use TPN as their only means of nutrition and others use it along with eating by mouth or with tube feedings. The main thing to understand is that TPN is receiving nutrition through your veins when you are unable to eat or cannot sustain yourself through eating alone. 

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    My IV pole from when I was in the hospital. The white bag is what a bag of TPN looks like that has lipids in it. A TPN bag without lipids is usually yellow. 

    I have been on TPN many times for different reasons. The first time I was put on it was a hospitalization before my first surgery. I was so very sick and my large intestine was bleeding so much that I got multiple blood transfusions right away. Everything hurt, I was losing a ton of weight, and it was decided to put me on TPN to give my digestive system a rest and see if that would not only reduce the pain but also give it a chance to heal. No luck.

    I’ve been put on TPN before major surgery when I’ve been very sick and underweight to help me go through major surgery in a healthier condition. Your body needs all the strength it can get when recovering from surgery. 

    I have been put on TPN because I have Crohn’s disease in the small bowel. The majority of your nutrients are absorbed in the small bowel but when disease is active, especially in the ileum (which is my j-pouch now), malabsorption can occur. I have lost weight very rapidly because of malabsorption due to active disease and then I am put on TPN. 

    Most recently I have been on TPN because on top of Crohn’s disease I also have a motility disorder. 

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    This is not TPN, it is a tube feed system. Read on!

    In the hospital after a few weeks of TPN and after some recovery from my surgery and once I was done with antibiotics from the infection I got, the only thing holding me back was that I was unable to eat. 

    Because I have a motility disorder I have these issues quite often and have had to be hospitalized because of them a few times. Motility disorders are even more misunderstood than IBD is, and they seem to act with no rhyme or reason. There are also very few treatment options and treatment usually revolves around symptom management. Often TPN, fluids, pain medication, and NG tubes. Motility diseases and disorders can occur at any age and can give you problems all of the time or come and go. Many patients who have motility disorders are not able to eat by mouth permanently. Others are able to, and everywhere in between. Often patients use tube feeding if there is any motility at all in the digestive tract because it is safer than TPN and better for you. I could write a book on this but if you are interested in more, I have some links I can provide for you with more information.

    My IV pole when I was on both TPN and tube feeds.

    While I was in the hospital and on TPN we were trying to get me to be able to eat so I could go home. But anything I ate caused me immediate pain, severe abdominal distention, nausea, and often vomiting. The easiest way I can describe it to you is like my system just sort of shuts down. So we decided to do a trial period with an NJ tube (a tube that goes in through your nose and you swallow down into the beginning portion of the small intestine). If the tube feedings with the NJ tube went well then I would have a small operation to have a GJ tube placed - a tube that goes into your abdomen and directly into the small bowel. The picture above are my tube feed bags hanging from my IV pole. 

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    So I had the NJ tube inserted and we started the trial period of tube feeds with it to see if I would tolerate that, and if I did I would have the GJ tube put in. But…I didn’t tolerate it. Even at a very slow rate of 10ml per hour it caused me nausea and since my stomach wasn’t emptying (or at least not how it should) once I had a certain amount of the formula in me I would throw it up. The nausea was the worst part. The tube feeding made me feel so horrible that I laid there in bed the entire time feeling like I couldn’t even lift my head off the pillow or I was going to be sick. I was miserable and lucky for me I have one of the best nurses in the world and she stopped the feedings and told the doctors that she wouldn’t even run them anymore because I was feeling so awful. Thanks, Amie! 

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    Just a random picture of my PICC after it was put in. 

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    So the tube feedings didn’t work and it was back to TPN. In order for my specific insurance to approve going home on TPN they need proof that I was unable to eat anything by mouth. Lucky for me I have years of documentation from 2 different hospitals about having a motility disorder, and we had even shown them that we tried tube feeding but that failed. Eventually my insurance approved me to go home on TPN and a week after that I was set free! 

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    Just hanging out in the hospital one of my last days. 

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    Casually lounging. haha image

    And so my TPN from home adventure began. This was only 2 hours after I had gotten home. A big van pulled up in my driveway and delivered me a small refrigerator, TPN bags for the week, and a ton of medical supplies. Soon it seemed like my home was feeling more like a hospital than my safe haven. 

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    I wasn’t expecting it, but being attached to an IV pole at home caused me a lot of anxiety. There is something about being reminded that you are sick at home that just didn’t sit right with me this time. More on that later!

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    A bunch of paper work to read over. 

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    Thanks insurance!!! I mean $450 is just pocket change. ;) 

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    The inside of my new fridge that is now full of TPN bags and additives. 

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    supplies 

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    And here I am looking like a terrible mess on night one of my infusions. I was freezing cold at home, my clothes were all too big, and I hadn’t showered in over a week. Off to a good start!  

    Recovery at home the first week was exhausting. My first shower I was so weak that I sat down in the tub for most of it and just let the water fall on me. That is sad now that I think of it. I never even realize how these things are not normal and I get sad sometimes when I think of myself being that weak and that sick. No one should have to suffer like this.


    Excuse the..uh…bathing suit but there was a day that I tried to clean my room and was putting my summer clothes away that I tried on my bathing suit and I often take pictures of my body at different sizes throughout the year. Now I am 10 pounds of fat larger. lol 

    I came home at 100 pounds even. I was tired, underweight, and so exhausted. One day I went to Target (Not alone, I was driven to Target) and had to go sit down in the food court area because walking around was too much. 

    I was also freezing cold all of the time from being underweight, no matter what I could not get warm. I even ended up buying a heated mattress cover so that my bed would be warm because no matter how many blankets I used I was shivering at night. It’s like a giant heating pad for your mattress. Best purchase ever! 

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    The night time in general was awful. I couldn’t sleep. Something about being hooked up to my TPN at home caused me anxiety, I was cold, I was underweight and wherever my knee and ankle bones touched when I layed down hurt.  I would end up falling asleep between 5-8 in the morning and then getting up a few hours later. 

    But then! Miracles. I was able to start eating small amounts with no pain. I was gaining my strength back steadily and able to do more. I’m stubborn. I fully admit that. I hate being held back and I am determined to get back to normal. There was even a good week and a half that I totally cheated and took myself off TPN because I was eating everything in site and gaining so much weight. 

    In truth it’s only been a month that I have been out of the hospital. It’s been up and down. I have had very good days and I have had my bad days. For about 2 weeks now I have been back to where everything I swallow causes me a ton of pain. You’d think that would be enough to stop me from trying to eat but I keep torturing myself. I just got off the phone with the home care team this morning and I am going back to just doing TPN and not eating to see if that helps. It’s so difficult for me. I’m not hungry but I just miss food. The delicious taste of food. 

    Now my world feels like it’s in limbo. If there is a heaven and heaven is healthy, and there is a hell and hell is the hospital, I feel like I’m stuck in purgatory right now. 

    There is so much to tell and this story is so long but I will end it here. Until next time…

  8. Vote for me?

    Vote for me? I love what I do helping patients with chronic illness, more specifically patients who have Crohn’s disease or ulcerative colitis. I’ve been nominated (click to see for what) and I would be honored to have your vote. With it I will be granted a wish, something to help me do what I do better. I know just what I will do with that wish. Please help me out! Click the link and then “like” my picture. By liking my picture you are giving me your vote. Thanks so much! 

    https://www.facebook.com/media/set/?set=a.755107027856189.1073741834.162754717091426&type=1

    This is the picture over there that you would want to “like” if you want to vote for me. 

    *Other Thoughts*

    1. While you’re there like TGBM’s facebook page if you haven’t already. Trust me, they’re worth it. 

    2. The winners wishes are granted with a percentage of funds the GMB raises during this quarter. Where does this money come from? Sales from their awesome shirts! Quick,click the link below and go buy some! The more they raise, the more they help people in our community doing great things. It’s a win/win! You look rad in your shirt and they help deserving people. http://thegreatbowelmovement.org/ibd-tshirts/

  9. NEW VIDEO: How I “Eat” - TPN (Total Parenteral Nutrition) 

    How I do my TPN from home. Sorry it’s so long and there are bad edits. I’m too tired to care. 

    xo

  10. Upcoming Events!

    Hello muffins,

    I have some upcoming events that I would like to tell you about because if I will be in your area we may have the chance of meeting up or you can sign up for some of these events with me. I also need to put it out there due to recent events that I never travel alone, I will always be accompanied, and I only attend events to make friendships and absolutely nothing more. Ever. Period. If I have ever mentioned to you that you cannot meet me you will be asked to leave and escorted out of the event. 

    Phew! Now that that’s over (awkward) let’s get on with the fun.

    CHICAGO: I will be attending Digestive Disease Week on May 3rd and 4th. Digestive Disease Week® (DDW) is the largest and most prestigious meeting in the world for the GI professional. Every year it attracts approximately 15,000 physicians, researchers and academics from around the world. Janssen, Pharmaceutical company of Johnson & Johnson is bringing me and many other of your favorite internet IBD advocates together for some exciting things during DDW. Once I have more of a schedule I will be able to tell you if we can meet somewhere in the city for lunch or coffee. Sounds fun right?! 

    NEW YORK: I will be in New Rochelle, New York for the 3rd Annual Climb for Crohn’s and Colitis on May 17. Come hang out with me there! 

    MICHIGAN: If you are a former or current camper or counselor of Camp Oasis (or possible future camper) attend the reunion on April 26th! Take Steps is June 21 and Gut Girl may just show up, and Camp Oasis Michigan is in July. 

    I think some of Gut Girl’s outfit melted in my trunk during camp. 

    OHIO: I will be participating in Get Your Guts In Gear August 16-17. Come ride or come crew! 

    Stay tuned. There is talk of Florida and Tennessee in the works and who knows what else will happen. For more information on any of these events please contact me! 

  11. #flashbackfriday 

    Named one of the top Crohn’s disease videos of 2013 for a video many of you love! 

    Check that video out and more on my YouTube channel https://www.youtube.com/user/bedroomdancing911

  12. Coping and Recovering from Surgery for Crohn’s disease or Ulcerative Colitis

    It was recently heavily requested that I do a post about recovering from surgery at home/ways to cope. Understand that the way you recover/cope may be very different from how I do. It may also depend on the type of surgery you had. Recovering from j-pouch surgery is going to be different than adjusting to living with an ostomy, which will be different from recovering from a resection, a strictureplasty, etc. And no two people are the same so two people who had the exact same surgery could recover very differently. With that said here are some things that I think may help; 

    1. Expect a variety of emotions: You may feel angry, fearful, sad, resentment, etc. All of your feelings are valid feelings to have and I think it is important to recognize them and let yourself feel them so that you can get to a point of moving past the more negative ones. You might wonder what your body is going to work like, look like, if life will ever be “normal” again, and so much more. These are thoughts that almost all of us have. Expect to feel a lot of things as your body recovers and you adjust to life after surgery. 

    2. Team Work Makes the Dream Work: You may want to push everyone away (I have done it) when things are going terrible but the best thing you can do for yourself is let others in. Find others who have gone through it so you guys can vent/offer advice/laugh and cry together. Some of the things that help me most are text messaging or emailing a friend who is in a similar situation so we can talk it out. If you don’t have friends with IBD consider searching online for support pages. It also helps to get involved in person. Some of my favorite events have been Camp Oasis, Get Your Guts in Gear, and smaller events arranged my us bloggers or smaller foundations. Now I have a team of best friends who have Crohn’s disease or ulcerative colitis and it has been the most helpful thing for when I am feeling alone and like the “normal people” just don’t understand. 

    3. Don’t be afraid to ask for help: If you feel like you just can’t shake depression or anxiety then take it a step further than finding friends with IBD and get yourself a doctor who can help you. There are now mental health experts who specialize in chronic illness that you can see. Ask your doctor for a referral and remember there is nothing wrong with needing help. 

    4. Take it Easy: This is advice I need to take myself. Don’t expect to come home and feel like you used to. Allow yourself time to rest, take it slow, don’t push yourself. 

    5. Hobbies: Recovering from surgery often means being out of school or work for a long period of time. It can feel very isolating when everyone else you know is at work and at school. Sometimes I feel like I am going to go crazy if I have to spend another day alone for hours stuck in bed or on my couch doing nothing with no one else around. Find hobbies that you used to love or pick up some new ones that are easy on the body. Arts and crafts, buying new stationary and sending snail mail, a game on your computer or phone, taking daily walks, reading, movies, etc. This will keep you busy and help those lonely long hours pass by more quickly. 

    6. Get Outside: For real. You have no idea how much this will help you feel refreshed and a little better about things. If you have the strength to drive I have always liked taking small drives with the music up and the windows down if I can. I also really enjoy nature and some of my best ideas have come when I am outside just taking a walk. If I am really sick I will just sit on my porch or have a loved one drive me around just to get out of the house. You need to get out! 

    * Reality: Coping with surgery is different for everyone. If you have been really sick and had major surgery that has changed your life there are going to be many thoughts, fears, and emotions. Sometimes recovering and coping is temporary and eventually you will get back to normal life. Sometimes life changes for good. After my surgeries life never went back to what I thought it was going to be. Not only did my body work different and look different but I never was able to get back to school, pursue the career I wanted, and just everything changed. I have been going in and out of the hospital since and I had to make adjustments to my life. It didn’t happen overnight and it took me a lot of getting past anger and resentment and sometimes I still get very angry and resentful. Eventually I found a new career that works with the life I have now, I met my very best friends, and life went on. The most helpful thing for me is having a support system, friends I have in life who have this disease to talk to. It’s hard because life will never be the same and that is difficult for anyone to swallow but I don’t want to live my life angry and I take advantage of any time that I feel decent enough to really enjoy life. There are also those of us out there who have surgery and go on to live in remission ever since and there are people out there where surgery was the best thing for them and they go back to doing everything they used to do. You never know what your story will be! 

  13. Do You Have a Death Plan?

    I know I should be finishing my hospital story but that will have to come later since I still can’t put it into words.

    If, like me, your disease has ever been severe, you have probably thought about death. I don’t want to die, I picture myself living a long long life. Us Ringer’s are stubborn that way. My Great Grandma lived past 100 and my Grandma right now is awesome at … 90 something? P.S. My Grandma is on facebook and types in all caps SO SHE CAN SEE THE FONT BETTER SO IT ALWAYS LOOKS LIKE SHE’S YELLING. Oh Gram! 

    If I were to die someday soon I feel like I have accomplished at least some good things while I have been here. I don’t know what I want my legacy to be or what I want to be remembered for, I just know that I don’t want to go through life just working some job and going through the motions of day to day life. I want to LIVE! I want to laugh, take chances, learn, leave an impression…you get the idea.

    Anyway, back to death! You know how I like to pick really uplifting topics to blog about. ;) 

    I’ve come frighteningly close to death too many times, more than anyone my age should have to come. When I first started dealing with things more severe I didn’t even know how sick I was. I let myself lose (everyone learn the difference between lose and loose please and thank you) so much blood and get so bad that when I finally decided to go to the hospital I was given blood transfusions and a bunch of other stuff to get me to a much healthier point. Over the years through having my surgeries and going through so much I have thought about death a number of times. This last time though really struck me, I guess because it came out of nowhere. It came on a normal day when I was at work and planning on going to dance class later and next thing I knew I was having emergency surgery to keep me alive. 

    Out of freaking nowhere! Wait. I’m not ready! I can’t die now my house isn’t clean. What about my blog? Who will be in charge of my funeral? Oh it’s funny what you think about when things like this happen. Do you guys have a plan? I’ve always thought about it, have always been meaning to do something about it, but I never have. When you are married they look to the spouse to handle those things but if you’re not married they will most likely look to the parents next. And though I know my parents love me very much in their own way, I don’t think they would really know what I want when I die. I don’t know that their vision of a funeral for me would be my vision. Of course I want to make everyone happy, after all a funeral is more for the living than it is for the dead. On the off chance that I’m around to haunt my funeral I want to enjoy it! 

    Anyway, I have some paperwork at home and I’m going to write down some things that I have in mind. Not only about when I die but for who gets to make the decisions if I can’t and whatnot. I also need to leave my passwords with someone so that you my friends will always know what is happening even if I can’t tell you myself. <3 

  14. #GetYourBellyOut? Taking invisible illness and showing it’s visible parts.

    It has been asked of me numerous times to participate in #GetYourBellyOut on twitter. But before I do anything as an advocate I like to think about it. I represent myself and I like to represent myself in ways that I am completely comfortable with, but I also represent this community. Because I’ve been asked so many times, I will repost the pictures that I’ve already taken throughout this blog. Which is a crazy bunch of belly pictures! I have to admit that I don’t have any pictures from my time with my ostomy. I wouldn’t let anyone take pictures and I was so sick then that taking pictures was the last thing on my mind. Now I wish I had. 

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    So why haven’t I done it yet? It’s simple really. Y’all have seen my belly probably more than you’ve wanted to! I already have a bunch of pictures on this blog of my stomach in numerous conditions. You can see it bandaged up right after surgery, with staples in it, when my scar is healing, when my scar is healed, when I have a blockage, when I gain weight, and when I lose weight, etc. Are you sick of seeing it yet? haha 

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    Simply, I haven’t posted pictures because I already have and because I don’t feel like taking a new one. 

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    Thoughts:

    1. I started posting pictures of my stomach years ago to teach you all that you have nothing to be ashamed of. If I am confident in my scars then maybe I could inspire you to be too. So if this hashtag inspires you to post pictures of your stomachs then that is awesome! Go for it. Especially if you haven’t before. There is something liberating about just letting it go. It’s like you’re saying, “Hey world, these are my battle scars because I’ve been through something big!” 

    2. If it spreads awareness that people who have Crohn’s disease and ulcerative colitis go through very serious things resulting in major surgery. Having to have entire organs removed or parts of organs removed or having them repaired numerous times because of a disease that causes so much damage is better awareness than something that gives the wrong impression. 

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    So enjoy the repost of belly pics. I hope that over the years I have shown in my own way how serious this disease is, and also have inspired people to be more confident in themselves. 

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    This is about what my current condition is. Still red but healing well. 

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    And lastly a belly picture before my surgeries ever happened. Back when my stomach actually had muscle! lol