ibd

  1. #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. 

  2. 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

  3. 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…

  4. 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/

  5. 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

  6. 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! 

  7. #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

  8. 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! 

  9. 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 

  10. #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  

  11. Septic? My lungs are what!?

    There are always parts of my hospital stays that I don’t remember. I have bits and pieces but trying to remember is like trying to put a puzzle together that doesn’t have all the parts. So I can only share with you what I remember of this, and I may be off on a few of the details. 

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    Somewhere along the line I developed a high fever. High fevers of course are usually a sign of infection. That led to drawing blood from my PICC line and also drawing blood from a seperate location in case the PICC was the source of infection. As I said in my previous post and in posts before that, it’s not an easy thing poking me. Finding a vein in a task is itself so it took a few people and then the stat nurse came. 

    Not only did I have a high fever but my white blood cell count was off and I had tachycardia. Tachycardia is a high heart rate. Your heart rate should be about between 70-100, over 100 is bad news. I was consistently in the 120’s and up to the 140’s. As I said my memory of everything is a little off because two months in the hospital…well the days just seem to run together. All I know is that there was talk of me being septic, fear of an infection in my PICC line, and some confusion. It seems as though every doctor I asked had a different opinion on the sepsis or whether or not I was septic or something like that, and I guess there is a scale to determine how septic you are? Anyhow I felt awful through all of this and a nice course (by nice I mean awful) of IV flagyl and vancomycin was started. 

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    Flagyl has always made me feel terribly sick and when the vanco was started I had an immediate reaction to it. Luckily my friend Nadia was staying with me that night and I found the words to ask her to go get my nurse because something was wrong. Anyway it was stopped right away and then I did what I always do and I turned to you guys. This time I texted my friend Beth who was also in the hospital the whole time I was so we shared texts daily about how miserable we were. She told me she had the same reaction to vanco and mentioned something about running it slower. So from then on I was on 2 weeks of IV vanco with a dose of IV benedryl before the vanco was started and we ran it at a much slower rate and that seemed to work so I didn’t have a reaction to it.  

    Oh, I forgot to mention that I had been moved to the 2nd floor. At least I think I was on the 2nd floor when that happened. The 2nd floor is the cardiac floor and with my high heart rate I was told that I had to be moved there because the nurses were specially trained to administer certain kind of medications that I may need in case my heart rate got too high. Awesome that isn’t scary or anything. 

    Those couple of weeks I was really worried about the sepsis, the antibiotics, and my heart rate. I was also dealing with little to no motility in my intestine which was causing me horrible nausea and vomiting. More on that later! I did come back from the 2nd floor a few days later. My heart rate was still high like it was but I guess maybe stable enough to not need those medications? I don’t  know really why it was decided I could go back. 

    But the scariest thing of all was the night I got moved to the 2nd floor. It was the middle of the night and I was in a deep sleep and medicated and woke up to voices. I opened my eyes and I had two doctors standing over me saying things but I wasn’t awake yet to understand what was going on. Because I was wearing a heart rate monitor and they had noticed my heart rate being too high they came into my room to tell me that I needed to be moved. They also said that in the x-ray I had that day that I had so much air and fluid trapped in my body that it was pushing my diaphram up and my diaphram was pushing on my lungs and kind of deflating them. They told me I would need a new NG tube right away to decompress me and have my lungs expand like they should. But since they had just woke me up from a deep sleep and I was so confused all I could say was that I didn’t need an NG tube. I said this because a few days earlier an NG tube was left as an option for me because I kept throwing up and was nauseous. So they told me if I wanted I could have another NG tube to help alleviate that. Of course I chose not to. 

    So when these doctors woke me up I thought they were talking about that and I kept saying that no I didn’t want an NG tube and that the doctors told me it was my choice. Apparently that upset one of them and he went on to yell at me about how sick I was and that by looking at me and looking at how distended my stomach was that I needed this NG tube and I didn’t have a choice and my x-ray was explained but all I could understand was “collapsed lungs” and that made me think I had a pneumothorax. 

    Once I woke up and could understand a bit more I asked the nicer doctor to explain everything to me again and that is when I found out about how high my heart rate was and what my x-ray showed and why I needed an NG tube. So late at night I got myself my 2nd NG tube of my stay. 

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    Looking annoyed with my new NG tube in.

    So yeah, that was my next two weeks. I should also mention that the vancomycin made me crazy. I’ve never experienced anything like it in my life but it caused me such confusion. I couldn’t understand where I was at times, couldn’t talk to people right, couldn’t make sense of things, and at other times I would say the craziest of things that I didn’t remember later. I hated it. 

  12. Part 2: The First Few Days After Surgery

    Do you ever think about what really goes on during surgery? The positions your body must be in to access certain parts of your body or just that your body is exposed in general and then you have to face the people who saw you in those positions. Also I’m pretty sure you must be naked during surgery or at least really exposed, so who dresses you after? And how hard is it to dress a person who has been put to sleep? All of a sudden you’re awake and in recovery and you have clothes on. Yep, these are the things that run through my mind. I got complimented on my semi-colon tattoo though. haha 

    So my story left off with me getting through surgery and being brought to my room.

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    I posted most of my hospital pictures on my personal facebook. I hesitate because lets be honest, I look awful. The ONLY reason I do post them is because people need to see. Our efforts to get people to take Crohn’s disease or ulcerative colitis seriously are hindered if all we do are show pictures of us doing excellent. Yes it’s nice you climbed that mountain or ran that marathon. But WHY? Why did you run that marathon? Because you’ve been here. You’ve suffered too. I love seeing those pictures, they make me happy. I also think these pictures have their place too. This is reality, and that is why I share. For all the people that tell us we don’t look sick. Well, no, maybe we always don’t. But we are, and sometimes we do. I have lost about 10 pounds from when this was taken but in this picture I appear pretty puffy. Probably from the air the put in you during surgery. 

    To be honest I don’t really remember much of that first day.  I don’t remember who all was there but I know I had people who love me with me. I came out of surgery with an NG tube in which was a blessing. My surgeon asked if I wanted it to be put in during surgery and hell-fu*!&ing-yeah I did! If I can avoid being awake while an NG tube is inserted that’s a win in my book. So I woke up with an NG tube in but no catheter. That first day all I remember is the pain I had of having to get out of bed to go to the bathroom. I was so scared because I remember how hard it was during my first surgery after I had my large intestine removed. It’s just so crazy to be cut open, have your intestine taken out of your body, untwisted, and then put back in, then have your body stapled back up. 

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    I couldn’t see my scar because of the bandages but I was happy I made it through with no ostomy. J-pouch still there and still lookin’ good. As good as a j-pouch can look I guess. 

    The first few days I wasn’t very independent. Getting up meant calling for help to have the NG tube disconnected from suction and then help just to stand on my own two feet. Did I mention the pain? I did, but I’m mentioning it again because OW! Just to stand was a slow process. 

    My friends at family members had fun at my expense. Sharing with me things I said or what I do during my sleep when I am on pain medication. I even sent this text!

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    And a lot of other texts very similar to this one. hahaha

    I do know on the first day I got my PICC line placed. I was so happy that my surgeon, who knew nothing about me, took my word and granted my wish of giving me a PICC line as soon as possible.  I also explained to him my dysmotility problem and some other health history and was very pleased that he listened and let me be a part of the decision making process. And because of my dysmotility TPN was started right away. This also made me happy because IV’s are not even an option for me anymore. I hardly have the veins for them, they always blow, and it takes numerous pokes and usually a stat nurse to get one started only to have it blow not long after. It’s a huge source of anxiety for me. 

    Then… all of a sudden I couldn’t pee. I mean we scanned my bladder and a ridiculous amount of urine was trapped in me. 1.2 liters to be exact! So guess what I got? A cath, and was it easy? Oh no, why would anything be easy for me? For some reason what is usually a simple process turned into two people staring closely at my lady bits that hadn’t been showered or shaved trying to get this cathedar to go in. The first attempt failed so we gave me a break and tried again later. Again it took a long time, pain, and bleeding, but most of all embarrassment. I cried. I cried of embarrassment and just felt like all the dignity I had left was gone. And believe me, after the things I have been through in this lifetime I didn’t even think I had any dignity left. But I found myself crying after enduring two people working for a long time trying to get me cathed. And a few days later I wound up with a UTI. Joy! 

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    And then there was my scar. I had never had a scar that was raised like this so I was frightened that it would heal like that. 

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    However it looks like this right now. Once the redness and bloating goes away I think it will be just fine. 

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    Have I ever told you how sexy I am with tape on my nose? Here I am walking one of the first days there. I got my catheter, my PCA pump, fluids, TPN, extra electrolytes, and the regular pump traveling around with me.

    And really those were my first few days. Things didn’t start getting worse until a week or so later. At first it was just generally recovering from surgery. 

    Stay tuned for: 

    Septic and antibiotics

    Tachycardia and floor 2 plus a rude awakening and new NG tube

    Floor 9

    Tube feeds and my motility

    Home with TPN 

  13. In the blink of an eye you could be gone.

    Well that sure is a happy little title to start us off. Leave it to me! 

    We all know our days are numbered. We know that anything can happen at any time. But normally we don’t go around thinking about that. At least most people don’t. 

    I am going to share with you the past two months but this is going to have to be broken up into a few different blogs. This is the story of why I had surgery.

    I woke up one Wednesday morning in January and got ready for work. I was excited because I had dance class that evening once I got out of work and had really been looking forward to going. 

    Everything about the day was as it usually is. I made my coffee, I got ready for work, and I drove there. All feeling fine. I got into work and kind of felt bad, had a little pain, but nothing I couldn’t handle. I am used to this after all. So I start my first client at noon who was in for a pedicure. As soon as I sat down to start I was in terrible pain. I tried to keep going but the pain got worse and worse. 

    Now let me tell you, I can handle pain. I am no sissy when it comes to pain so I was bound and determined to get through this pedicure.  But this pain was probably the worst pain I have felt to date. So I made up an excuse and told my client that I needed to go grab a different tool that I left in my manicure station and I walked out of the pedicure room and straight into the office where my friend Sarah who is the operations manager was. I told her that I didn’t know what to do, I was crying, and getting so hot and flush that I was certain I was about to throw up right there in her office. So the office is where I remained while Sarah went to find someone who could finish the pedicure I had just started (how humiliating).  As I was in the office I tried sitting down, standing up, leaning against the desk, ANYTHING just to get in some sort of comfortable position but the pain was relentless. 

    And then we were off. Sarah grabbed my coat and my belongings and she drove me to the hospital. Of course me being me I tried to talk myself out of going into the emergency room.  ”I think i’m better (meanwhile dying)”, “I think this will pass”, “It’s probably nothing so we can go home”, but in the end I knew that I had never felt pain like this and knew that I needed to go to the hospital. The only thing that I could think to tell Sarah was “It feels like an emergency in me”.  And an emergency it was. And poor Sarah, I hate that I had to put her through that. Me in her car squirming all around and yelping in pain. She did good. 

    To make this story a little shorter I’m not going to go into all the details of triage and what not but lets just say that normally I get rushed in right away based on my history, but this time we had to wait. Ironic because this time was the first time I needed surgery right away. Of course I didn’t know that at the time. 

    Anyway, I end up on a stretcher in the hallway because they were over crowded, I finally got pain medication and that really helped. Cool I thought, it’s probably no big deal, maybe a partial blockage or something. After my x-rays some dumb doctor told us that it didn’t look too bad and that they didn’t even know if they’d keep me over night but she would have the surgery team come see me and evaluate whether or not I needed a CT scan.  More pain meds, finally got moved into a room, and I was doing swell (I thought). 

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    I took this picture while in the ER. Still not knowing how bad things were.

    I told my friend Sarah to go home and I just hung out in that room until it was decided I needed a CT scan so I drank the contrast and had a CT scan.  That was when Kathi, the woman I take clogging classes with, showed up.  I texted her earlier in the day to let her know I wouldn’t make the class but she decided to come see me at the hospital once class was over.  I am so thankful she did…

    As she got there the surgery team came in with the results of my CT scan. “You need surgery right now”.  This can’t be right. Are you sure? Can we wait until morning just to see if it’s nothing?”  

    But Dr. Eggenberger, a surgeon I hadn’t met before, explained to me that once the colon is removed there is really only one artery that supplies oxygen and blood flow to the bowel.  My bowel had twisted around that artery cutting off the blood and oxygen and if we didn’t operate then the bowel would go necrotic and I would die. Or I would end up losing 90% of my bowel…which sounds pretty much like you’re going to die to me.  I was scared. Dr. Flanagan had done my first two major surgeries and him and I had developed a really good relationship. I trusted him and he knew me and my health and my hospitalizations were easy because of him. If I needed something he got it for me. He did everything he could to make my hospital stays more comfortable for me.  But Dr. Flanagan has retired and now I had to trust this new doctor who I hadn’t met before but I had no other choice. (But he’s great and I like him a lot). 

    I started crying and was so scared that I would lose my j-pouch and wake up with an ostomy and I just was not prepared for that.  I was so glad Kathi was there because otherwise I would have been completely alone. At this point it was pretty late and I had no time to call people to let them know what was going on. I quickly called my mom’s cell phone and said something like “Hi mom and dad, I’m going into surgery right now. But don’t worry everything will be fine and I will call you when I can.” I knew they would never make it. They live an hour away from the hospital and it was late and they were probably asleep. 

    Before I knew it I was being wheeled to surgery prep, signed some papers, talked to the anesthesiologist, and that is about all i remember until waking up….

    And then I was awake. I was in recovery and had the sweetest nurse there working hard to get my pain under control. Pain control is something that is tricky with me. It happened after my first two surgeries too. But eventually I was stable enough and was brought to a room.  

    The technical term for what happened is called a volvulus.  I hadn’t even heard of that before. See, even I am learning new things. It was an open surgery and while he was in he got rid of some adhesions too. All I remember was asking everyone if I had an ostomy and what happened during the surgery. Is it fixed? Would I be okay? 

    It’s scary how life can be going just fine and in the blink of an eye it changes.  I could have died. Had the pain not been that bad I probably wouldn’t have gone into the hospital.  I HATE going to the hospital so I usually try to avoid it.  If I had let it go any longer my bowel would have turned necrotic and then what? Out of nowhere, that day I could have died. 

    I just don’t like this.  This feeling of not being able to trust my own body.  I am scared to do anything right now. I kept thinking “what if it was my dance classes and somehow my bowel twisted because of that?”  Or what did I do to make this happen. I know that it wasn’t anything I did really. That when the colon is missing the small bowel kind of just does it’s own thing without the large bowel there to hold it up.  Your intestines are constantly moving and mine just decided to be a jerk. I can’t trust it. I have come close to losing my life so many times now. I’m too young for that. 

    Part 2 to come…

  14. IBD PAJAMA PARTY!

    If you missed my IBD Pajama party you can watch it here! 

    http://www.ustream.tv/recorded/42384206

    For those of you who came, THANK YOU! I was so proud of you girls for chatting with me. I expected a lot of dead air and everyone being afraid to talk but you all were so amazing! I loved all the questions that were coming in. I couldn’t keep up! You deserve the biggest hugs and pats on the back ever! <3 

    Sooo…here is where I tell you I’m an idiot. I thought I would be able to go back to that page page later and see all your questions and respond to them but I can’t. Or at least I can’t figure out how to yet. :( I don’t want you to feel like I am ignoring ya. So we can do two things:

    1. We can do another PJ Party again where I will answer more questions. 

    2. Message me your questions and I will respond in a blog. 

    For all of you beautiful girls who attended, what did you think? Your feedback will help me for future things like this. Did you like it? Should I do it again? Did you feel like this helped you in any way? What would you like to see done differently? 

    I am listening my little muchachas! I love you all soooo much and I am supporting each one of you as we go through life with chronic illness together. You are NEVER alone! 

  15. Christmas and Size 00 Jeans

    Time for me to continue my story…

    I left the hospital after six months on December 22nd and a few days later it was time to celebrate Christmas. When I left I had only been off TPN for two days. Prior to that it had been months since I had been eating real food except for a few mini Reeses Peanut Butter Cups I would buy at the hospital gift shop as part of my daily routine. In fact, they wanted to send me home on TPN but i had no health insurance and there was no way my family could afford that. So I was sent home to learn how to eat and I was sent home on subutex, a drug normally given to addicts to wean them off and help with withdrawal. That earned me an alert in my files and during an ER trip later on I was refused pain medication and told I was a drug addict until my surgeon showed up to yell at them and have them treat me and remove that from my file. 

    Don’t even get me started on what six months in a hospital with no heath insurance does to you…

    Everything felt different coming home. I was different. Six months is a long time but in a way it’s also not very much time at all. Not enough time to wrap your head around an ostomy, a j-pouch, what surgery does, and everything else that had happened. So while my hospitalization felt like it was forever, in the grand scheme of things not enough time had passed for me to adjust to my new body and my new life. In fact, I didn’t know what life would be like at all. 

    I didn’t feel like I was part of the festivities at all that holiday season. My mom asked me what I wanted for Christmas and I didn’t know what to tell her. “Clothes I guess”.  I needed clothes to fit my new body. I hadn’t put on makeup for about 8 months, I hadn’t styled my hair in just as long. I lived in hospital gowns and sometimes pajamas. 

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    It was a little after Christmas that I took this picture. As you can see my room was decorated for Christmas. Indicated my the reindeer on the door handle. lol

    My hair had almost all fallen out and my skin was ghostly white. My body underweight and my skin as pale as a ghost. I forgot what it was like to feel pretty.  I forgot what it was like to be normal. To just do very “normal people” things like have routine. Get up, shower, get ready, to go a job or to school, come home and do things. It had been so long. 

    I smelled. 

    I was gross. 

    My mom took me to the mall to look for some things to wear and to my surprise I couldn’t find any jeans that fit until we went into American Eagle Outfitters where they sell size 00. I put them on and they were still baggy but we went with those. I got a pair in 00 and a pair in 0.  After that we went to Forver21 where I found long john style pajama pants that were gray with little blue hearts on them. These would be nice to keep me warm and they’re cute. So we got those too. After that we found some sweaters and called it a day. For the next few months any time I needed to wear real clothes I would wear my double zero jeans with the long john pajama pants under them to help hold them up. 

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    Christmas morning came and we were going to my Uncle Tim’s house to see all of my dads side of the family. Today I was going to wear real clothes! I was going to try and do my hair and my makeup. 

    I went. It was different. I kept thinking about everything I had been through. Weird thoughts like;

    This is my first Christmas without a large intestine. 

    Can I even eat any of this without a colon? 

    What do people without colons eat? 

    The whole thing just ended up being a strange day. I enjoyed time with my sister and my cousins but I was so exhausted. This is the most I had done in so long and I hadn’t really been sleeping for months. My Aunt and Uncle ended up offering their guest bedroom to me where I went and fell asleep until my family was ready to leave. 

    That was my first Christmas after it all changed. 

    Stay tuned!…