Shoddy Plumbing — A Backstory

May 5, 2010

I lived a great deal of my young life as a normal child. Well, I wouldn’t go so far as to say “normal”… but I was healthy. I enjoyed playing outside, running around, eating pizza and ice cream, and living in my imagination. I thought I could do anything; nothing could stop me.

Then, I was diagnosed with Crohn’s Disease. It was January of the year 2000, and I was 12 years old. The times surrounding being ill before actually being admitted to the hospital are a little blurry, but I believe that I was living with the symptoms of Crohn’s for a good period before that. I was NOT enthusiastic to share the details of my excrement with anyone, so I struggled along for a while hoping it would just go away. I hid my symptoms from everyone; my doctor would often later describe me as stoic. I had severe bloody diarrhea and anemia and couldn’t eat when I finally went to the doctor.

My pediatrician recommended that I go to the emergency room. Young and afraid, I actually lied about the severity of my symptoms, something I’m not proud about. It’s hard to lie about having blood in your stool when you’re forced to poop in a cup and show it to someone though. I was referred to an awesome pediatric gastroenterologist, and had a colonoscopy done which confirmed that I had severe inflammation in my colon. Diagnosis: Crohn’s Disease.

I was in the hospital for about a week. I was put on a ton of drugs including high doses of the dreaded prednisone. I suffered with the social stigma of having a moon face and gaining a ton of weight, but I felt better. Some kids asked questions or poked fun at my ballooning cheeks, but it was a temporary issue… or so I thought.

Year after year, I tapered off prednisone, flared up again, started taking prednisone again, felt better, tapered off, and started the whole vicious cycle over again. I had multiple hospital stays (each lasting about a week) in my young life, and my doctors kept changing my drug of choice, but the only thing that really seemed to make me feel better was the prednisone. Prednisone with nasty side effects, unrecommended for long term use.

Some relief did eventually come when I was around 18 or 19 years old, but it didn’t last very long. My doctor suggested that I try remicade (also known as infliximab). Taking remicade meant that I would have to take a few hours every 6 to 8 weeks to get an IV infusion as an outpatient. They would pre-medicate me with benadryl that would really knock me out, so I was useless for pretty much the whole day. However, I felt like remicade was a MIRACLE drug. I felt amazingly better just hours after the infusions, and I would have almost normal-person bowel movements! I could eat whatever I wanted and felt great! Infusion days were almost like a vacation. I got to sleep in a big, comfy chair, my nurses were amazing, and it refreshed and regenerated me. I did this for two years; then, the medication stopped being as effective. I started having to get a higher dose at shorter intervals. Eventually, it was only making me feel okay for about a week before I would start having the same old symptoms. Medication was failing me again.

I ended up being hospitalized again, being referred to an adult GI, and trying even more medications. I tried humira, which involved giving myself an injection, and cimzia, which involved a home nurse giving me injections. I noticed absolutely no improvement from these two medications at all. Well, crap. Literally.

Currently, I am 22 years old. I am on flagyl, ciprofloxacin, and colazal, but I honestly see no improvement whatsoever from these either. I was on 10 mg of prednisone a day, but still experiencing stomach pain, diarrhea, and loss of appetite, when my doctor suggested that I should have surgery to remove my colon to alleviate my symptoms. Some days, it was a struggle just to get out of bed and WALK. I felt like my colon was going to fall out.

I have an appointment scheduled with a colorectal surgeon on May 28th to discuss my options. I almost felt like I wasn’t going to make it until then, but my doctor allowed me to increase my prednisone dose to 20 mg a day. I am feeling some prednisone side effects such as hot flashes and inability to sleep, but I think my colon will hold out until I get everything situated.

I will update further after my appointment with the surgeon. I certainly have my doubts about the possibility of a permanent ileostomy, but really what am I holding on to? My colon has been severely inflamed for years, I can’t stay on prednisone (and don’t want to), and I’m sick and tired of feeling sick and tired! And wouldn’t it be better to get this operation done the right way by a doctor I trust and on my terms, when the alternative could certainly be ending up having  emergency surgery in the middle of the night at a random hospital after a bowel perforation?

So, here’s to taking risks and making major life-altering decisions. Here’s to good health and taking my life back. Hopefully, with this blog, I can document my transition from my life as a sick person to my life as a healthy person.

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3 Responses to “Shoddy Plumbing — A Backstory”

  1. thailainthesky said

    I wish I had been as proactive as you. I kept putting it off, hoping the symptoms of my Crohn’s would just go away… until my colon perforated. Emergency surgery sucks!

  2. Chrissy D said

    It’s amazing how similar our opinions of and histories with predinsone, remicad and humara are.

    Being on predinsone as a child is the very worst. The feeling of being different, the fact that NO one understands “the moon face” or why you are some what fuzzy… OH AND the hot flashes… I just cant understand why in the last 10 years it is still the best drug they can give us… (I am on it now (again) and a little bitter)

    Then I had the same interaction with remicade and humara… if only remicade could have worked forever? (it was SO good when it worked…)

    anyway… reading your experience has really helped me feel more connected, so thanks again…

    • Piper Lee said

      Sorry it took so long for me to reply! It means a lot to me to be able to help you at least a little bit. It is so crazy how similar our stories are. I hope you are able to feel much better soon!

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