My Remicade Experience

 If you have IBD, your gastroenterologist will recommend you take medications at some point. Even if you have a mild case of IBD you might need a little extra help to get back into remission. There are several different types of medications; some are more aggressive than others, while some are more mild. It's all about working with your doctor and being on the appropriate medication for you. Some people are OK just going on prednisone once a year, while others need to take handfuls of pills everyday, on top of receiving infusion treatments every six weeks, and then there are people many shades in between.

I'm not here to give medical advice. I'm just sharing my experiences with biologics, the strongest kind of medication there are to treat IBD. A lot of people ask what to expect when they first start taking these hefty medications. Everyone's disease and body's are different, and I can only tell you how I reacted and worked for me. I can't tell you what will work for you, or your friend, or family member with IBD. Any questions or concerns you have should be brought up with your GI.

I was in the hospital, extremely ill, and steroids and Asacol weren't doing anything for me- it was like breaking a your leg, taking Tylenol, putting a splint on it and calling it good. My progress was laughable- I was actually getting worse, lost another five pounds in a week, and needed surgery. My doctor told me that he was going to try a new-ish, exciting therapy for my colitis. I'd receive a Remicade infusion.

Remicade is a super sweet drug. It's made of 75% human proteins and 25% mouse proteins. It's hybrid coolness is delivered via an IV in the span of about two hours, where the mousy goodness works by blocking something called a tumor necrosis factor-alpha protein. TNF, as it's called for short, promotes inflammation in certain parts of the body, including the gut. Since IBD causes inflammation in the bowels, the idea is to block that which only makes it worse.

Not my colon. Obviously.

I barely noticed when my nurse hooked the Remicade to my cluttered IV pole. I fell asleep. After what seemed like a few short minutes, I woke up. The Remicade bag was gone, but the nurse was there. I asked her what happened, and she said that I had been asleep for the last six hours and was already done. She just needed to check my vitals frequently after the infusion.

SIX HOURS?! WHA- I was asleep again. I didn't wake til the next morning. Apparently, being 25% mouse is exhausting.

AH! Now that's my colon! Before Remicade. 09-02-11, one day before diagnosis.
Note the ulceration that looks like the letter "H" in the top left photo. I think it stands for "Hell'.
And yes, that is blood and mucous leaking from my colon walls.

Three days later, I had a flex sig (like a mini- colonoscopy). I was due for surgery the next morning, 7 AM sharp. If my colon had not healed enough, I would have to have surgery, or my colon would burst. In the slim chance that the Remicade worked, I'd get to keep my colon for the time being, with the understanding that it would more than likely come out within a year, but I might be able to keep it for up to ten years. Scary stuff for a girl who had graduated high school the year prior and had had an otherwise healthy life.

My docs wanted to put me on the same sedation used during colonoscopys, because I was in so much pain. However, being my usual feisty self and wanting to see how bad or better my colon had gotten, I insisted that I only receive half the sedation. They agreed, but I kept yelling at them for being rough on a broken butt. Anyhow, my colon looked tons better. The wounds had healed nicely as they could in only a few short days. It wasn't perfect, but it sure was prettier.

When I got out of the endoscopy room, I shot my dad the thumbs up. He snuck me some fries from the hospital cafeteria to celebrate. The doc canceled my surgery, and I spent another two weeks re-cooperating in the hospital. I received my second infusion there as well. I was feeling better and better. For the time being, my flare was still bad, and I was still going more than twenty times a day. Between the Asacol, prednisone and Remicade, and handfuls of goodness knows what else, I didn't remember feeling so well in a long, long time.

AFTER! Bam. I am a rock star. 09-14-11
While this picture was taken 12 days later, keep in mind I  was no better during that period,
and this is 2-3 days after my first  Remicade infusion.

I went to a clinic for my third infusion. I had just started working again, but only part time. I was still in a lot of pain but I was only going 10-15 times a day. There was hardly any blood in my stool anymore. I got into the La-Z Boy chair, reclined, and started my infusion. Because I had to receive potassium through an IV for a week while I was in the hospital, my veins were very thin and the Remicade actually burned. Uncomfortable but exhausted from the drug, I crashed. Someone gave me a ride home, and I went straight to bed.

The next morning, I woke up in extreme pain. The joints in my body had swollen so badly and were so stiff, I could barely dial my doctor. It took me several minutes to slowly locate the clinic's number on my phone (this is why you put your doc on speed dial!) and call. I had to use speaker phone, because I couldn't bend my elbow or raise my arm to my ear.

I explained my symptoms: I was extremely tired, and couldn't even get out of bed. I felt awful. My nurse told me to go into ER. I don't remember if she told me an hour to wait for a ride was OK or not, but that's what I did. (My parents live a ways away.) I can't say it was a wise choice. My poor mom isn't trained on how to help very sick people not collapse to the ground and hurt themselves. While waiting for her, I stupidly decided standing on a slippery shower floor to loosen up my joints was a good idea. I don't know why or how I forced my body to bend in any way at all in that kind of pain and stiffness.  I'm just glad I didn't fall.

When I got to ER, I was admitted shortly. I hobbled up to the counter to tell the poor lady what I was in for and she gasped. Apparently, her son was to start Remicade shortly for UC, and she was terrified of the medication. I will say I have never gotten into an ER room faster for something IBD-related. She made sure I was taken care of right away.

Nothing super exciting happened in ER. I mean, my veins were so thin that they had to try and put an IV in for morphine multiple times, and got it on the fifth try, but not before they burst one so bad blood spattered all over me and the bed. (Seriously, I wish people would listen when I tell them which is my only good vein.) All they told me is that I had joint pain, some kind of medication side effect, and that I was very tired. Also, colitis. NO FREAKING WAY!!! I should have offered them a trophy for the discovery and a sucker for the traumatic IV experience. With that, they they shot more morphine into my bruised arm, and sent me home- high. I was stumbling around in the parking lot trying to figure out how to get home, because my ride had to leave, and bus service in MN is crap. (Needless to say, that hospital is now on my list of places to never be admitted to again.)

After that little debacle, my then-GI ordered a blood test to see what exactly happened. When the results came back, I was told my body had rejected and developed an antibody to Remicade. It would never work for me again. I had at that point tapered off all my other medications. Nothing was treating my IBD. That certainly explained why I was getting sicker and sicker again. That was a terrifying phone call. I refused to educate myself on IBD at all up to that point, and didn't know there were other options. I thought I'd have to have surgery.

But, she said, there were other options. She told me that sometimes, when people react badly to one biologic, they respond very well to another, and she thought Humira would be a great choice for me. I was hesitant. I'd have to give myself shots, and recalled that her optimism about Humira reflected the other GI's about Remicade. I had no choice but to agree to at least try. I really hated needles, but surgery was way above and beyond a little needle poke.

Next week, I'll go into what Humira is like for me, and all that good jazz. Stay tuned!

How IBD changed my life... For the better.

Trigger warning: self-injury, suicidal thoughts, and angering hospital stories.

The best feeling in my life was the moment I came to terms with my disease and accepted that I was no longer the same person. Luckily for me, my diagnosis and the circumstances of how I was diagnosed changed me for the better. I won't say it was an easy journey, but it was liberating.


Anyone who knows me knows that I struggle with depression and social anxiety. I have for years. The depression and anxiety only became worse, and I turned to self-injury as a way to cope. I spent my high school years in treatment for severe depression and self-injury, which you can read more about here.


After I graduated, I had no goals, no direction, and no dreams in life. I was doing better than I had as a freshman in high school, but I had no ambition. A month after graduation, I noticed small amounts of blood in my suddenly loose stools. I was in pain all the time. I lost my appetite. I even soiled myself once or twice. For half a year, I lived like that. It stopped for a couple months, and I thought it was over. When it came back, it was much worse. I was going to the bathroom every fifteen minutes, not getting any sleep, throwing up all the time, and soiled myself in public so often that I lost count around the twenty-fifth time. This did wonders for my self-esteem. If I had had the energy to go out and live life, I wouldn't have wanted to. I was deeply ashamed of my body.


When I was diagnosed, my colon was nearly ready to burst. Prednisone (a steroid used to treat inflammation in the body) agitated my anxiety and depression symptoms. I started having violent, seizure-like panic attacks. I had the emergency response team rush into my room because I stopped breathing when I had a particularly bad attack.  I wanted to die: the pain in my guts and joints was so horrible, I told someone how I was feeling. I was then put on suicide watch, and the nurses started telling my family members that I was "crazy in the head". My doctor wouldn't let me have any pain medications, except the occasional Vicodin and a single Lidoderm patch a day, even though my pain team had already agreed that I needed much stronger medications more often. Every three days, a doctor would put me on another suicide watch, even though I was no longer suicidal. Very twisted, very unprofessional. I'll never let such an incompetent, cruel doctor ever treat me again. I have the right to be treated humanely and with respect.


As awful as my hospital experience was, it lit a fire inside me. I became angry. The anger wasn't good for my colitis, but it was good for my soul. I realized that I wasn't a bad person and I wasn't crazy, even if nurses told my family I was. I accepted that even if I had no control over my bowels or needed an ostomy bag, that didn't make me a disgusting person. That made me a very sick person with a medical condition. I recognized that I was a hurting, scared young woman, but self-injury was not a healthy way for me to cope with the sadness. I realized that I am worth so much more than a blade, a sadistic care team, and a handful of diagnosis's.


Determined to prove hospital staff wrong and show that I am a strong, independent woman who don't need no incompetent doctor, I began to fight back. I started playing with makeup. Gone was the Goth look I favored in high school. I just wanted to feel as girly as possible, and embrace my feminine side. I even occasionally wore pink. I was trying to find myself again. I found strength in myself that I didn't know I had.


Once, hospital staff in the psych ward refused to give me pain medications unless I came to the desk to ask for them. I was so weak after having lost forty pounds in one month and in so much pain, that I collapsed on the floor. I laid there for five minutes crying, because the fall hurt, my guts were littered with bleeding ulcers, I had to use the restroom, and no one noticed me lying there in the doorway. I tried calling out, but my voice was weak. My dad came visiting in the nick of time, chewed out the nursing team like I've never seen anyone do before, and then demanded that I be transferred to another hospital. That never happened. They just discharged me two days later, probably because my dad and I always made a big fuss and were getting lawyers involved. Anyway, I made the nurse who told me I had to come to the front desk nearly cry. It was my first time ever speaking out for myself and telling someone where they stood with me. It felt great.


After I got out of the hospital, I started thinking about what I wanted to do with my life. I decided I wanted to keep a blog. I started reading books about IBD, and became excited at the thought of writing one for children with IBD some day. I was finally on fire for once in my life.


I slowly came to terms with my sickness. I accepted that there is no cure, but remained hopeful that there would someday be one. I embraced my femininity but kept my edginess.  I started doing things that made me happy. I educated myself about IBD. I see the same therapist I've had since I was sixteen, because I recognize that this is a tough diagnosis to deal with. I took charge of my medications, lining up doctor's appointments, and advocating for my health needs.

Having IBD made me empathetic towards others, and made me truly understand that you never know what anyone is going through. I understand pain. I understand what it's like to wake up in the morning and not be able to move because you ache so horribly. I know what it feels like to be judged because you look young and healthy, but you're not. I know just how fun it is to wake up every morning to blood draws and then eat your hospital breakfast of chicken broth, because you're on a clear-liquid diet. I know what it's like to soil yourself in front of your boyfriend. I even know what it's like to meet your boyfriends parents for the first time and literally crap yourself. None of these things were fun, but they have made me a better, stronger, more emotionally healthy person because of it.


I am thankful for the lessons IBD has taught me. Do I wish there had been an easier way I could have learned these things? Of course! But if there was an easy way to learn life's lessons, they wouldn't be as effective. I have never been happier in my life, or more thankful of the people who love me. That's not to say that UC doesn't get me down sometimes. It's frustrating disease to have. But I don't let it get me down. I just take a deep breath, get back up, and keep going.


I hope you keep going, too.