World IBD Day!

May 19, 2010

May 19th is World IBD Day!

I feel this is appropriate since Crohn’s and surgery are pretty much all I have been focused on for the last couple of weeks. I just had my last day of work on Sunday; I hadn’t been giving 100% at work anyway recently since I’ve been feeling bad, and I wanted to have some time to prepare mentally and physically before surgery. I work at an animal hospital as a technician, so work days can be long and stressful and I’m always on my feet. They took me off the payroll since I do not know exactly when I’ll be able to return, but I’m hoping and praying that they will hire me back with no problems after I’m ready to work again, because the employees there are like a second family to me.

Now I only have 2 more exams left this semester, then I can rest until my operation. My health has really suffered this semester, and I’m struggling to pass at least one class, but I just want it to be over now.

In a week, my mother wants me to have one last vacation with her in Myrtle Beach, South Carolina before I get my surgery. I am only going because she really wants me to. I am honestly not looking forward to the long drive. Hopefully, this will be my last vacation ever as a sick person.

I have been feeling the worst in the mornings, which is the usual for me. Sometimes it is difficult just to stand up straight or to walk. I don’t ever want to eat in the morning either. I’ve also been sleeping in later to help get past the early morning woes.

I still don’t have an exact date scheduled, but I can’t wait. Waiting always stresses me out. I’ll update when I get my appointments scheduled, and after meeting my ostomy nurse.

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Meeting My Surgeon

May 5, 2010

I got a voicemail on my phone today as I was driving to school that said I could get an early appointment with the surgeon at 2pm today if I could make it. I got the message at about 12:15pm, and I decided that it would be worth it to skip my class and call out of work so I wouldn’t have to wait another month to get the ball rolling.

My surgeon was very helpful and explained things very clearly. She was very willing to let me ask as many questions as possible and made me feel very comfortable about everything. At this point, I don’t feel like this whole thing is going to be a very big deal, but I don’t think I will fully realize what it is going to be like until it happens. Everything is pretty surreal at this point.

According to the doctors, I’ll have to have a permanent ileostomy. My rectum is pretty diseased and unhappy, so they have to take that out as well as the rest of my colon. I won’t be able to have the opportunity to have a J-pouch, but I am not sure I would want to go that route anyway. Something about creating a pouch that could fail out of my remaining healthy intestines is kind of scary. A K-pouch might be convenient if it was successful, but it’s not really for Crohn’s patients. Therefore, permanent ileostomy is the path we are taking.

I’m kind of happy that this is when it is happening; it could have been a really inconvenient time. I can finish out the last couple weeks of school and final exams and recover over the summer. I want to go to veterinary school eventually too, so at least it is not interrupting something like that.

They are going to call me soon and set up an appointment with an ostomy nurse and a date for surgery. I’ll probably be in the hospital for about a week afterwards, then I’ll probably be recovering for 6-8 weeks. Crossing my fingers and hoping this is my “cure.”

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 havingĀ  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.