Remicade Week 0

What is remicade?
Remicade is a drug to help reduce inflammation, it is an immune suppressant drug
Given through IV infusions
Patients who do not respond to pill form medication and who do not what to be on prednisone long term find that remicade helps.
Remicade is used to help patients living with autoimmune diseases plaque psoriasis, rheumatoid arthritis, psoriatic arthritis, adult and pediatric crohn's disease, ulcerative colitis and ankylosing spondylitis.

The typical schedule for remicade treatments is
Week 0
Week 2
Week 6
And then every 6-8 weeks after for as long as you respond to the medication.

I had my first round of remicade January 15 2016
I watched a lot of YouTube videos which made me feel better about the whole thing.
I went in at 9:15am and was out around 12:30pm.
The first 3 rounds usually will take 3 hours. They start the IV drip very slow then work up to the full amount your doctor prescribes.
The nurses first gave me 2 Tylenol as a pre-drug to make sure I did not have any reactions to the medication. Then they started a simple saline drip after 30 minutes they could start my remicade. The nurse did suggest I take Tylenol at home before coming so I do not have to wait 30 minutes the next time. The nurse started my IV in the arm because it was biggest vein. I think next time I would prefer it in my hand only because every time I moved my arm an alarm would sound the machines are just sensitive.
I did notice every time they increased the dose I would feel really tired and it burned going in my vein a little. But I was completely fine. The first time was fine the nurse did say a lot of people respond to remicade but I may not start noticing changed in my symptoms for a while.
After I had my treatment I was so tired, I would describe it as running a marathon but all I did was sit in a chair for 3 hours. The next two days after I was just extremely tired and a little cranky and so hungry.

What to Pack

Remicade Day
1. Face masks, hand sanitizer, tissues, hair ties.
2. Phone charger
3. Contact solution
4. Head phones
5. Coloring book and colored pencils
6. Slippers
7. Shawl
8. Neck pillow
9. Crackers
10. Water bottle
11. Phone/ Tablet

For my treatments I have to go to my hospital to recive IV infusions of remicade.
My hospital has very nice reclining chairs and a lot of pillows and warm blankets. They also provide food, soups and crackers and drinks. They also had a basic chair for a guest to sit.
I put together a hospital bag for when I go so it is easy for me to grab and go every eight weeks everything stays in my bag until the next treatment.
I would also suggest wearing comfortable clothing, the first couple treatments last about 3 hours long. I also do not really need the neck pillow or shawl but the hospital suggested it because sometimes they do not have enough pillow and blankets.

What is Ulcerative Colitis

Ulcerative Colitis (UC) for dummies would be described like this...
 Every time you eat something your intestines can not digest you feel like crap with stomach pains and bloody, diarrhea for days.

The more accurate description of Ulcerative Colitis is
Inflammation of the walls of the bowel accompanied by the formation of ulcers in the intestines.
This is a inflammatory disease, something that will not ever fully be cured unless you have you colon removed.
Basically every time you eat something your body can not digest properly your body is attacking itself trying to warn off that "foreign object"

Some say that UC is genetic and it is something that is always in your body but just appears to get worse and worse over time.
This disease is very individualized for every person. There is no specific diet to follow to help you get better. Foods that I may not be able to digest other UC people are okay with eating.
Just for example my "trigger" foods are
Lettuce
Steak
Watermelon
Carbonated beverages
Popcorn
Dairy Products mostly just milk
For myself and most UC people all vegetables have to be cooked
It is suggest for most UC people to not have high fibrous foods
Sometimes after diagnosed with UC your GI will refer you to a dietitian to help you out also.
For myself these are foods that if I eat them I will go into a "flare up" meaning I will have bloody diarrhea and stomach pains for a couple of days until the formed ulcers heal. The goal is to stay in "remission" so avoiding these foods is critical to making me feel better.

I, along with a lot of others effected by UC need the help of medication. I have gone through in a previous post about my history with medication. But to help stay in the "remission "period medication can help. This is also very patient personalized, I did not respond to basic pill form medication to help keep my UC at bay, so now I have to be on a heavier medication to help me.

I would suggest being in communication with your GI doctor. UC is very individualized and only you and your doctor can figure out what is right to help you.
When I got diagnosed my doctor gave my Lialda and said here you go this will help and did not even explain what UC was, so I had to do a lot of research for myself.

My First Year with UC

My GI doctor put me on Lialda right after my colonoscopy which was fine for a couple weeks. I then started to regress from that medicine. I had my first bowel incontinence accident on July 4th in public it was so embarrassing. After that I had so many more accidents and I lost a lot of weight I would lose a pound a day. I also had no appetite.  It was so bad I wanted to quit my job because I would have accidents while at work. My GI doctor then put me on Prednisone at the end of July. Prednisone is the miracle drug but it makes you crazy. I felt so good. I was only on prednisone for a short time after I weaned off I was taking a generic probiotic by my choice I felt great for about 3 months. I had a flare up and my GI put me on Balsalazide. I took one dose of it and stopped thinking I was pregnant. I ended up being okay for a couple more months then the day before Thanksgiving I had another bad flare up. I started the Balsalazide again and after weeks of it I started to regress really bad again and I had so many accidents again. I was also taking Iron supplements which made me really constipated which was a good thing but it hurt my stomach. In December I went on a 12 hour car ride with my parents and my mom noticed I was having a terrible time, we had to stop all the time for bathroom breaks. I was at my wits ends I felt terrible. In January 2016 I made an appointment with my GI doctor after looking up other options. At this point I just really wanted my colon removed which makes UC go away. But my doctor suggest a Biological Therapy called Remicade that they offer to patients who do not respond to pill form medications and who do not want to be on prednisone forever. It is a form of IV infusion medication. I had my first treatment January 15th 2016. I hope it starts to work for me. December 2014 I weighted 199 pounds as of January 2016 I currently weigh 160 pounds.

 November 2014                                                             December 2015

Background

My name is Aubrey, I am 25 years old and I live with ULCERATIVE COLITIS.

I noticed symptoms around December 2014 which included
-Extreme weight loss without trying
-Bloody stools
-Lose stools
-Loss of appetite
-severe anemia
-Going to the bathroom more than 20 times a day
-Severe stomach pain which landed me in the ER twice

I decided to finally make an appointment with my primary care doctor who refereed me to a Gastroenterologist. I met with my GI doctor for the first time in June of 2015 and he immediately wanted to do an emergent colonoscopy. 3 days later my GI doctor told me I had mild ulcerative colitis.
Please follow my journey living with UC I am so new to this and when I was diagnosed I looked all over the internet for support. I hope to at least help one person who is living with UC and give comfort to let them know they are not alone. Because I felt very alone when diagnosed and searched for help.