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Diagnosis Story

As I sat on the ugly yellow floor of the bathroom in my suite my first semester at Cottey College, I wondered what was happening to me that my body would rebel against itself so violently. What was happening to me that I would wake up at five o’clock in the morning with a pain in my back far beyond anything I had ever felt before and proceed to get sick seven times within two hours? I had no control over my body. After those two hours nothing had improved. 

Luckily, one of my suitemates got up early to study for a test and discovered me hobbling back to my bedroom. She rushed me to the local emergency room where they ushered me into triage and asked me a series of questions, one of them being the most pointless question ever uttered, “Can you tell me how much pain you are in? Just on a scale of one to ten?” I looked up at her from the keeled over position I had been in for nearly three hours by that time and muttered, “Ten.” Although, what I wanted to say was “Well, I would say it started out as a ten, but now, I would say it is roughly thirty-seven. Give or take.” 

Shuffled into a room of my own, luckily set up with an adjoining bathroom, I threw up three more times. It took the nurses six different tries, each in a different spot in my arms, to get an I.V. properly inserted so that they could give me some medication. Finally they did and I was placed on a few different drugs; one to calm my stomach and a couple for the pain. I was asleep within fifteen minutes.

After that point I remember very little of that day. I remember my grandma coming in, and then my mom a little later. I vaguely remember being moved to a different room. I spent all day in the hospital, undergoing multiple tests, including one that showed I was severely anemic. Out of a normal 12-hemoglobin count, I had a 7. I was given three units of blood before I went into laproscopic surgery at the end of the day to get some answers. The doctors still had no idea what was causing all of these problems. As I woke up slowly from the anesthesia, my vision blurry and my stomach sore, I did not even recall going into surgery. Apparently my mother was crying and telling me how much she loves me, but I have no recollection of it at all. I was wheeled back into my private room where my mom and grandma were waiting and soon the doctor came in to tell us the diagnosis: Crohn’s Disease. 


This is the thrilling tale of the day I was diagnosed. I still only remember bits and pieces, which is why this writing seems a little choppy. A lot of it has been filled in by my friend who took me to the ER, my mom and my grandma. It was an incredibly scary day for all of us. However, it was the day that some pieces of my puzzle began to fit together. For instance, I have had joint pain for most of my life, and it got progressively worse in the months leading up to this day until I was barely able to hobble around my dorm room. Also, I had a severe infection earlier that year, for no apparent reason at all. The blood in the stool. And, of course, the unexplainable digestive issues that went on for more than a year prior. On this day, however, everything clicked. It was a long, hard, scary process, but at least I had some answers.

Comments

  1. That first ER visit is always a doozy. I HATE when they ask me how much pain I'm in too. I like to say 8.333 repeating. What the hell? I'm in pain fix me!

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  2. Been into the hospital so many times with flare ups that I basically tell them what to do now: phenergan, lortab, IV saline, sleep and nothing but liquids for a couple of days.

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  3. hi i was dignosed when i was 10 and i recently have been experincing horriable back pain, almost as worst at the abd pain if this common with crohns diease, i was told it was by my gi

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    1. Hi Christine. I don't know how common it is, but I can definitely tell you that I experience pretty intense back pain on a regular basis. It gets really bad when I'm on my period (I tend to have a minor flare that accompanies my period anyway.) The only thing I've found that really helps is a heating pad or a hot bath. Sometimes laying in constructive rest (flat on your back on a flat surface with knees bent, pointing to the ceiling and feet flat on the floor) helps too. There's no pressure put on your back in this position, so your body gets a chance to fully relax. I hope that helps a little!

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  4. Hello Maggie,

    My name is Shauna and I am actually a second year student at Cottey!!! I work in the Alumnae Relations office and was contacted by my boss that you were coming to campus!

    You may wonder why I'm telling you this. Well it's because I was just diagnosed with Crohn's Disease in June! And my symptoms had been going on for several months before!!! With doctors telling me a couple times that I may not be able to go back Cottey was devastating but I am happy to say that I am sitting on my windowsill in Southeastern writing to you!

    I look forward to reading your posts!
    Shauna

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    Replies
    1. Hi Shauna! So good to meet you!

      I'm beyond excited to be coming to Cottey to talk about disability. Hopefully we can meet in real life while I'm down there!

      Thank you for sharing your story. I know exactly how it feels to have doctors tell you that you should take some time off. It can be pretty soul crushing. I'm so happy that you've been able to hang in there, though! That's really fantastic.

      Stay well!
      Maggie

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  5. in january of 2012 i was formerly diagnosed with crohns witch at the time i had insurance sence i was still 17 now im 18 and forsed to move to texas no longer having insurance in march of 2012 i had a surgery removing 5 inches of my small intestine due to bleeding/infected intestine with a abcess also in 2010 i had my appendix removed witch is when they first suspected i had crohns my older sister also has it but is healthy but i just cant seem to catch a break im currently on 6mp have been on steroids flagyl pentassa asacol cipro none really working in the past i dont really know what to do insurance wise im in to much pain to really work right now till i can get my crohns under control i just would like some kind of piece of mind did any of this happen to anyone else and if so what did you end up doing to get on insurance please help me !!!!

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    1. Hello. Thank you for sharing your story. I'm so sorry to hear that you're having such a rough time. I, unfortunately, don't have enough real knowledge of this subject to feel comfortable offering any advice. However, I'm going to share this post on both my Crohn's Chronicles FB page (http://www.facebook.com/CrohnsChronicles) and my personal twitter (@MaggLiz). There are a lot of people in the online Crohn's community who are super smart and incredibly helpful. Hopefully we'll be able to find someone who can provide some better advice than I would be able to give.

      Hang in there!
      Maggie

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    2. thank you very much

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    3. I am not sure if the insurance is still an issue since I see your post is from Sept but I live in Texas and was in a similar situation. I was diagnosed with Crohn's 2 years ago this month. I forced myself to go to school to get the school's health insurance however there was a period when that wasn't an option. In Texas there's something known as the Texas pool insurance, it's basically emergency health insurance. It can be costly depending on where you live but should be able to help until you can feel well enough to work or go to school. The link is: http://www.txhealthpool.org/. i hope things are looking up and you feel better soon :)

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  6. living with crohns disease has been well hard not easy but everyone on here can actually understand how i feel being on stereroids for nearly six months was defanilty hard made me gain weight couldnt do much witch is not who i am im a very active person the swelling of the legs fingers face even my chest was not only embaressing but painfull im now steroid free YAY!!!! but now finaly getting my body back no more puffyness still an extra 20 pounds sucks anybody else go trhu this what helped you loose the extra weight seeing to much exercise seems to put me in pain and eating healthy well i can forget about that vegtables make my tummy very upset not all of them of course but quite a few i dont even eat meat been in lots of pain lately so worried hoping im not gonna have to go back to being on steroids am currently on mercaptopurine seemed to being working but im not so sure now plus it causes terrible hair loss!!! feeling so alone in all of this has to be the worst part no one can understand how us crohines feel sure we look fine on the outside but not on the inside and now that i was diagnosed for a few years ive lost alot of my friends because i no longer drink alcoholic beverages due to causing a flare up so i geuss im boring o well i guess!! when i was in the hospital for my first surgery i had 6 blood transfusions and was in for almost 2 months boy that was hard seems like nobody knows what crohns is terribly hard to explain as well my pain is usually in my right lower abdomen like almost into my growing it shoots into my leg practically like a pins an needle pain with like burning ! Anbody else get this ??? didnt mean to make it so long just want my story out there hoping it will help me to know im not so alone here !!!! thanks

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  7. Hi Maggie,

    Hope you're feeling better. Sorry to hear about your pain and having to have surgery. I know about pain, too.

    In 1998, I was rushed to the hospital from non-stop vomiting. Gut wrenching knive stabbing pain in my stomach.

    I died in the ambulance and fortunately defibbed my heart and got it started again....and my 12 year old son was watching in the ambulance. (He was born old).

    Later, my doctor found one and a half feet of small intestine that had the irritation. He told me it was Crohn's Disease.

    Since then I have learned it can be lower or upper GI Tract. Luckily, I did not have to have surgery because I caught it in time.

    One thing I have learned. Is that what you eat has a powerful impact on how your body reacts and performs from top to bottom (pardon the pun).

    Sometimes it takes a while to come to realization about how to feed it and care for it properly.

    I had to learn the hard way and finally learned the nutritional skills needed to get back my health.

    Indeed, Crohn's Disease is no fun.

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  8. Hi Maggie... I´ve read your blog and I´m very impressed. You are really giving other people insight in how it is to live with Crohn..

    Have a look at this:
    http://www.piphealth.com/Default.aspx?id=63&ids=546346&ref=nov12&utm_source=weblink&utm_medium=referral&utm_campaign=ColitusandCrohn

    Let me know what you think!
    Kind regards.. Eva

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  9. My name is Sky Curtis and my son was very ill with Crohn’s Disease for years. Fecal transplants saved his life! After much trial and error, I developed a successful protocol for using fecal transplants to treat Crohn’s/Colitis at home. After years of suffering, my son was finally free of all his terrible symptoms! I have written a guidebook that shows sufferers how to do fecal transplants at home which is available for purchase at http://www.fecalinfusions.com and I am always available to answer your questions. I have now helped hundreds of people become well. There is hope!

    ReplyDelete

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