1. Hospital Stays

    I just wanted to post some of my experiences in the hospital through pictures. I think it’s important to show all aspects of our disease. Most people see us only when we look “normal” and don’t understand what we go through when they don’t see us. 

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    In the ER in 2010 with an NG tube in.  I was admitted for 3 weeks this time with a partial obstruction.  This was during the years I was having tons of complications after j-pouch surgery because they didn’t know I had Crohn’s disease and still thought I had ulcerative colitis.  They would admit me but not do much more than an x-ray and put me on bowel rest.  I HATE NG tubes. 

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    Partial blockage. Making NG tubes sexier one tube at a time. ;) 2010

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    In the fall of 2008.  This was my longest hospital stay - 6 months. (I was discharged here and there but was admitted again usually a day or two later.) This was a few weeks after my 2nd surgery where my ileostomy was reversed and I had adhesions that were causing a major obstruction.  My j-pouch wasn’t working properly and I would have numerous incontinence accidents at night resulting in having to wear adult diapers. I was so weak and sick that I couldn’t even clean myself up and lost all dignity having others clean me and care for me.  We discovered a motility problem and I had to have a catheter inserted into my j-pouch for awhile to help it empty. Not eating and being fed intravenously through my PICC line. 

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    2008. This was around Halloween. I can tell because one of those stuffed animals was a pumpkin someone brought when the visited.  Still not making much improvement.  Very underweight and in a lot of pain and no one could figure out all  the complications going on after my surgeries. So depressed. 

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    2008 my IV pole.  Hard for my weak little body to push around at the time. Was on TPN feeding for many months. Also had regular fluids, a dilaudid pain pump, and occasional antibiotics or infusions of whatever my body was deficient of. Usually potassium and magnesium.  

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    After my first surgery in 2008.  This right here is how bad it can get. In this picture I had not showered for weeks due to the terrible pain that I was in and being so weak. My hair was matted and oily and falling out in clumps because of the medications I had been on for so long and because of how malnourished I was at this point. My chin was full of acne from the steroids that I had been on for a long time. I was underweight (around 90 pounds in this picture) and relied on help for someone to dress me, bathe me, and move me. I had my ileostomy at this time and was having a lot of trouble. I was depressed, scared, and had lost any hope for a normal life at this point. 

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    January 2009 after getting out of the hospital after 6 months.  I was down to 82 pounds.   

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    June 2011.  First hospitalization at Beaumont and just found out I had Crohn’s disease and not UC. This was such a relief because it was an answer to why I still had such a difficult time after having my colon removed.  Here I was trying to show off my newly changed PICC dressing. 

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    2011 again. Back down under 100 pounds and in a Crohn’s flare. Many weeks in the hospital, IV steroids and TPN and started remicade. 

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    trying to take a picture of the large bruise on my arm from one of the IV’s I had in during my month and a half long stay.  2011

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    June 2011 eating ice chips because that was all I was allowed to eat. 

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    July 2011.  My very first remicade infusion.  I was still in the hospital. 

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    1st remicade infusion again. 

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    Just a remicade infusion. 2012

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    a short stay in spring 2012

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    2008 again during my longest hospital stay (6 months with a few discharges where I could come back within a day or two). I had 3 blood transfusions, 2 major surgeries, LOTS of IV pokes and blood draws. A PICC line infection that landed me a 104 or 105 degree fever and days in the ICU. Countless scans, scopes, and tests. Many NG tubes and other tubes in so many places it was awful. Unbelievable pain, months of intravenous feeding, etc. etc. etc. This was the lowest point in my life ever. 

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    2008 taking a self pic on my really crappy cell phone that I hardly ever even looked at or used during this time.  My hair here hadn’t been done in months and months (crazy if you know me). It was dark and so thin (also crazy if you know how thick my hair is). I would run my fingers through my hair and be able to hold huge balls of hair in my hands it was falling out so fast. I had been underweight and malnourished for over a year. 2 of my teeth chipped in the hospital also from being malnourished and because of the vomiting my disease causes. I was in so much pain and also so weak and depressed that I would go weeks in the hospital without showering until a nurse would come give me a big bolus of pain medication and force me to shower and help was me. 

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    2008 in the emergency room. Admitted again after being discharged just the day before. Another NG tube. :/ 

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    2008. My mom took this on her phone while I was sleeping. I even slept with a facial expression that shows I was always in pain. I was lucky if I got much sleep at all. 

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    2010 in the ER again. Admitted to the hospital. 

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    2011. Feeling better towards the end of week 4 in the hospital and IV steroids and TPN. Doing my nails here. Typical.

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    I don’t have many pictures from my childhood hospitalizations because I guess my parents didn’t take many. I used to get hospitalized every year starting at the age of 10 months until the age of 9 without fail. These stays would last a week or longer because of severe dehydration, diarrhea, and vomiting.  One time we counted me throwing up over 24 times in a span of 12 hours. Back then we didn’t know it was IBD. I’ve had these issues pretty much my entire life. 

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    Another childhood hospitalization. I hated when my mom would have to leave to go home to my brother and dad. It was scary to be a little girl alone and sick in the hospital.

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    Clearly spilled something on this picture. Me as a little girl in the hospital. I hated that they made me sleep in those crib beds. I felt like they were treating me like a baby! lol

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    2011. My co-workers are the best. They wrote me little get well notes and delivered them to me in the hospital. I taped them on my wall to make my room a little happier. 

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    2011. The day I was diagnosed with Crohn’s disease. Up to this point they thought I had ulcerative colitis and after I had my j-pouch surgeries my doctors stopped taking my complaints seriously. I had rapid weight loss for no reason, extreme fatigue, terrible pain that reminded me of when I had my colon and it was bleeding and inflamed, and some other symptoms. At first in 2008 they tried to figure out what was the cause but tests kept coming back with nothing. So when I still complained of problems and kept returning to the hospital they stopped running tests and searching for answers. I was told once that I was seeking pain meds. I was told once that it was “phantom pain” or that I should “talk to someone”. I was put on an anti-depressant and sent away because I “looked fine”. The last time I saw my previous GI I had lost so much weight even though I was eating more to try and compensate. I told him about the weight loss and how I thought it was probably because I wasn’t absorbing my nutrients. He told me I probably wasn’t eating enough! Even though I said I was eating more. I told him how tired I was and how I could barely walk down my hallway to the bathroom without holding onto the walls to steady myself. I told him that the pain reminded me of the pain I used to have when I had my colon and I was in flare-ups. And he said “you look fine to me.” Then he said he wasn’t even going to draw blood because it was normal a month ago. Then he prescribed me an anti-depressant! I drove home crying and frustrated thinking I would never have answers, I would always feel terrible, and no one would take me seriously. A few days later I got worse and knew I needed to go to the hospital. But I also knew if I went to the same hospital I had always gone to that they wouldn’t take me serious and would probably just put me on an IV of fluids and pain meds and send me home a week later without helping. So I took a chance and went to a new hospital. I was scoped and when I woke up I was told I had Crohn’s disease. Most people don’t like hearing this news. To me it was music to my ears. It was the answer I KNEW was there but no one could find. All it took was someone taking me seriously and looking to find the cause of my issues. This picture makes me happy. It’s proof that I wasn’t telling lies. It’s proof for all those struggles when no one helped. Right here in this picture are ulcers and inflammation in my entire j-pouch and as far up as they could see with the scope. 

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    January 2009 just days after getting out of the hospital for 6 months. I was extremely pale, weak, and underweight. 

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    2 days after my discharge after 6 months in the hosp. This was Christmas day with my sister below me, and my cousin to the left. First time I attempted make-up and doing my hair in months. 

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    April 2012. Short admission to the hospital.

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    My tummy was still bloated from the air they put in you for surgery but everything else about me was tiny. I lost the little butt that I had to begin with. Jan 2009

    After my 3rd major surgery in January of 2014. Emergency surgery when my bowel twisted around the mesenteric artery and cut off blood flow and oxygen to my bowel. Left any longer my bowel would have turned necrotic and I would have died.

    Sometimes invisible illness shows itself.

    My thigh. Bruised from heparin shots. The other thigh looked worse.

    With an NJ tube in. This was when we were attempting tube feeding and if it worked I would have a GJ tube surgically placed in my stomach. But I did not tolerate the tube feeding.

    Tube feed formula hanging from my pole and new pump for the tube feed. 

    Not feeling good at all.

    Well that is it.  I have not taken many pictures in the hospital and I have had many many stays.  I wish I took more pictures during my surgeries but I was just so sick it wasn’t something I was thinking about.