Remicade

I'm going to start this blog post by talking about Remicade.  What it is, How it works, How it worked for me in the beginning, and How it works for me now.  Then I am going to jump ahead to today and talk about the doctor appointment I just returned home from.  I know that the 2nd part of my story will not make a ton of sense until I finish updating you on my background with Crohn's, but please bare with me.

     REMICADE(Infliximab), is a biologic medicine that is administered via Infusion.  It's a 2-3 hour process of sitting in a chair with an IV in your arm while sitting in a chair.  For anyone who is going for treatment I highly recommend bringing something to do to occupy your time, and to bring a snack because you will get hungry.  Before I could take Remicade I had to have prior approval from my insurance company, and I had to be tested for Tuberculosis.  Once I was cleared I began the first 3 treatments, which are infusions of smaller dosages working the way up to the dosage that I would receive.  Remicade is unique because it allows the doctor to prescribe a specific dosage to a person depending on weight, height, and severity.  The first infusion takes place, and as long as there is no adverse reaction then 4 weeks later you return and have a 2nd dosage.  After the 2nd dosage you return in 8 weeks and have your 3rd infusion, and for most people the infusion will take place every 8 weeks.  I was on an 8 week regiment for about 9 months, and then I began to have a flare up around week 6 and a half so we changed my infusions to every 6 weeks.  I have been on a 6 week infusion ever since.  So what does Remicade do?  It provides fast symptom relief that may take place in as little as 2 weeks, it may help people with Crohn's remain free from symptoms or have very few symptoms, it may allow healing of the damage to your intestinal lining, it may close or reduce fistulas(tunnels from the intestines to the skin or nearby organs), and it allows many people to reduce or eliminate steroid use.  Steroids are used to prevent flare-ups, and mine were prescribed with an antibiotic until I started Remicade.  Remicade allowed me to reduce my medication list by a tremendous amount.  (Read more on Remicade www.remicade.com)

     Before I started Remicade I was taking 13-16 pills a day of prescribed medicine.  After Remicade I reduced my pill number down to 2-4 pills a day.  This is a HUGE deal for me because I suck at taking pills.  I have the worst time swallowing pills.  It's like my throat knows that I'm about to take my medicine in the morning and closes up completely on me. No one can look at me while I'm taking my medicine because I can't handle the pressure.  I need about 5 minutes per pill no matter the size.  It's absolutely ridiculous, but that's my life.

So when I first started Remicade I felt amazing.  I literally walked out of my infusion feeling 110% better.  I didn't have a flare up for the 6-8 week period.  I was eating well, and gaining weight.  Before I started Remicade I weighed 99LBS.  That's right 99LBS!!! I am 5'6" and a healthy weight is 125-130LBS.  SO 99 was incredibly scary.

Notice Collar Bone, and tiny arms.  This is what 99 looks like.

To date I have had 4 infusions of Remicade since my surgery...which I will get to soon and discuss.  But ever since I have gone back on Remicade after a 4 month hiatus I have been experiencing issues.  I get my infusion and I feel great for the first 10-14 days, and then I develop a fever, canker sores, abdominal pain, and loss of appetite for 7 days.  My symptoms begin to go away and I'm usually just left with healing mouth sores after that, but I return to feeling great until my next infusion.  This is my new cycle, and a nurse at our local hospital called it my "new normal", but here's the issue no one wants to feel like absolute garbage for 7 days out of a 6 week period.  So I have talked with gastro. and he is sending me to another specialist, and going to be conducting more tests to find out if the Remicade isn't efficent or if I am developing an allergic reaction to Remicade.  Has anyone had experience of this?  Cause my gastro is as stumped as I am.  SO until my next infusion because I just finished my 7 day cycle of being sick my doctor prescribed Pentasa.  For anyone who doesn't know this is a horse pill, and I am going to have serious issues swallowing it but if it helps me to not get sick then bring it on.  I'm hoping that maybe my body is just weird and as my doctor said I'm not acting like a "normal crohn's patient."  So hopefully we will get actual answers so I can get my body under control, and live a semi-normal life.  I know this is a very long post, but I hope it's been useful or opens up about me a tad bit more.



Continuation of my diagnosis

So in February of 2011 I met with my Gastroenterologist. He's a great doctor, but looked at me and stated that I'd be pretty with more weight. I stifled a laugh as the nurse told him that wasn't the proper thing to say. He then back tracked and told me I was pretty, but he wants to make me healthy. Which I will admit was a nice thing to hear because being sick and not having proper treatment, for a lack of better words, sucks.

We checked my symptoms:

√ Mouth Sores

√ Loss of appeitite

√ Weight loss

√ Abdominal Pain

√Diarrhea

√ Blood in stool

√ Swollen Joints

So he ordered me to have a colonoscopy, which would let him know for sure that I did indeed have Crohn's.

Crohn's disease is named after Dr. Burrill B. Crohn, who first described the disease in 1932.  Crohn’s disease belongs to a group of conditions known as Inflammatory Bowel Diseases (IBD). Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract.  Crohn’s most commonly affects the end of the small bowel (the ileum) and the beginning of the colon, but it may affect any part of the gastrointestinal (GI) tract, from the mouth to the anus.  All of this is according to the Crohn's and Colitis Foundation of America.

Once diagnosed with Crohn's we started the treatment process.

The following link is for the type of medications that are used for treatment. http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/crohns-medication.html  I have been on every type, and the one I am currently on is a Biologic Therapy.  The other medicines couldn't contain my flare-ups, and my gastro dr. recognized this immediately, and placed me on the biologic called Remicade.  I have been on this medicine for over a year, and found when I started the medicine it worked amazingly.  I will write my next post strictly on Remicade, and the benefits I had, and my "new normal" that happens now.  Hope this is helpful, and any questions just ask.



 

Take 2

So I had started this blog before, but the email I created was hacked.  I have no access to that account anymore, which means I can't delete the blog.  So here is the same 1st post I made under the Blog title of My Crohn's Life.  This will still be a blog about my Crohn's, life with, and other things about me.
     So let's start at the beginning...I started to take notice that my body wasn't functioning properly with about 2 months left of my sophomore year, but didn't think anything of it. Just thought it had to do with my college life (class, work, homework, stress, partying, & campus food). So I ignored my body, and dealt with the weight loss, the loss of my period, loss of appetite at times, the fevers, and stomach pain. The symptoms seemed to come and go (exception my period: I didn't have a period for 2 years)
In 2010-2011 I was a senior in college, and worked a full time job at a major hardware department store. I was having consistent stomach pain that started when I awoke, and varied on the pain scale all day long. I use to stand at my register hunched over because it felt better than standing up straight. I used to get asked all the time if I was ok, and I'd just respond yes I'll be ok. I was losing weight even though I was eating enough to feed a small family. Food has never been an issue to me....I love to eat almost anything. I finally lost enough weight where I became concerned, and scheduled a doctor appointment back home. I went to school 3.5 hours away from my hometown so that was rather hard to do. So I went to my doctors in February of 2011 and found out I weighed 103lbs. My nurse preceeded to ask me in the nicest way possible if I was eating properly or at all. I looked at her in astonishment and stated that I LOVE FOOD...food just didn't love me. I then waited for my doctor, and when he came in I was able to make a specific request for blood work specifically to look for Celiac or Crohn's disease.
The waiting game was torture. I had to wait 2 weeks for a phone call with my lab results, and all I kept thinking about was I hope it's not Celiac because I can barely afford everything as is. A diet restriction would of made it impossible for me to pay all my bills while buying gluten free food. Celiac is a gluten intolerance, which means that a person's body cannot digest gluten which is primarily found in bread, pasta, and many other foods containing wheat, barley or rye. On February 24, 2011, I was called and informed that my Celiac results came back negative, but the rest of my lab work was abnormal for my age so they referred me to a gastroenterologist.
I'm sorry this post is so long. I will write more about the 1st time I met my gastro Dr. next time. I'm going to try and steady my way into this so as that I don't get bored or bore you. I have 2 years of information to catch you up on, and then continue with present day. Once all the background information has been given about me and my crohn's then my blog will consist of my current crohn's state, recipes, life stories, etc. Hope you'll follow me, and maybe find this to be slightly helpful!