The worst month of my life

My life with Crohn’s disease, Part 3

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stephanie hughes 7th grade middle school class picture photo stolen colon crohn's ostomy colitis blog

About 6 months before I became sick.

September of 1999 was and always will be one of the most difficult months of my life. I was intensely sick and in a lot of pain and there didn’t seem to be any end to it. More than anything, my most serious symptom was the weight loss and lack of nutrition, since my body was passing food through so quickly without absorbing what I needed. I mentioned before that I was already a tiny kid in 8th grade, only 4’6” and weighing 75 pounds. Over the four to eight weeks where I was in decline, I dropped down to 50 pounds. My mom talks about how big all of my joints looked, especially my knees, since everything else was so shrunken. I didn’t realize it at the time, but my mom had to fight against rumors that I was anorexic.

There’s one particularly disturbing moment that stands out in my head that to this day that still makes me almost cry every time I think about it. I was standing in our downstairs bathroom with my mom. I’m not sure what we were doing, whether it was our hair or something like that. But I looked in the mirror and saw how sunken in my face looked and how prominent the bones were and I turned to mom and started crying as I said, “Well, at least I won’t need a Halloween mask this year.”

I don’t have any pictures of myself at my worst. I wouldn’t allow anyone to take any. The only ones I have are from the hospital, but they are probably about three weeks in, when I was doing a lot better and getting ready to go home. Looking back at those pictures now, it’s really sad to think that show me when I was “better”.

stephanie hughes crohn's disease sick hospital lost weight child kid duke stolen colon ostomy colitis blogThose few weeks before I was admitted to the hospital felt like my life was falling apart. I had trouble standing up, my hair was falling out in clumps, I was spending most of my time in the bathroom and I was blacking out at times. On the night before my appointment to go see the gastroenterologist at Duke Hospital, I had gotten up in the middle of the night to go to the bathroom. In that house, the bathroom was right in front of the landing from the stairs and my bedroom was on the other side of the stairs. As I was walking back to my room I blacked out and started falling into things. I banged into the wall and a dresser that was in the corner. I woke my parents up and my dad caught me before I injured myself, but I could have very easy fallen down the stairs. Even now, that’s still one of the scariest moments of my life.

The next morning, which was Monday, October 4, was my appointment at Duke. I remember sitting at the end of a long hallway beforehand because I didn’t have enough strength to walk all of the way down to the exam room, but I eventually ended up there. I can still picture what the patient room looked like with me sitting on one side on the table, my parents on the other and the doctor sitting in between. He basically took one look at me and said he was having me admitted and I needed to get a blood transfusion.

This is another one of those life-defining moments. My mom and I have the same blood type and she said that she would like to donate the blood to use in the transfusion. The doctor said that it takes a couple of days to process the blood after it’s donated before it can be given to someone else. Then those words that will always be seared into my memory, “She doesn’t have a couple of days.”

8 thoughts on “The worst month of my life

  1. larasmomKellt

    Your story moves me to tears. It could be me writing this except that I was 22 and down from 115lbs to 70. Thank you for sharing such a painful part of your life. Xoxo

  2. Miranda

    🙁 Makes me sad! I got diagnosed when I was 20 yrs old… I did not start having symptoms until I was about 14 yrs old.. and they where not severe enough to show any problem was present. I can not imagine being as young as you where and having to go through that! 🙁 Thanks for sharing your stories

  3. Kim

    Thank you for sharing. I’ve just been diagnosed at the age of 48 and the month before diagnosis was similar to yours. So much of the online information makes me feel that my future will be like this last month but you make me believe this is a disease that can be lived with.

    1. Stephanie Hughes Post author

      Kim, yes, I know how rough it can be, especially in the beginning. But this disease is definitely something that you can still like a very full life with. It does take some getting used to, but you’ll figure out what works for you and what doesn’t work. If you have any questions or need some advice, feel free to ask me or any of the other great advocates out there.

  4. Michelle

    Hi Stephanie! Thank you so much for sharing your story. It is so comforting to read something and know that there is someone out there that understands what you are going through. I am also living in NC and living with Crohn’s. I was diagnosed this past January at the age of 23 and nine months later I am still working on getting better! Luckily, Humira, Methotrexate and iron infusions seem to be helping me. I saw your post on the Wilmington Take Steps page and I am so glad I found this blog! 🙂

    1. Stephanie Hughes Post author

      Hi Michelle, thank you for your comment. I definitely know how difficult those first few weeks and months can be as you’re trying to figure out what’s going on. I’m glad that you seem to have found a good medication mix that’s working for you and I really hope you continue to get better! But know there’s a great group of us out there is you ever need someone to talk to.

  5. Mary-Margaret

    I remember when Becky and I came to visit you then. We were all besties 6th-8th grade:) We missed you so much at school. After we visited you at your house, we just rode in the car home just stunned, not talking alot, and almost to tears. We were all so young then and didn’t understand everything, but we knew our best friend was sick and we missed her and wanted her back with us;) I’m so glad you came back:)))


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