Prednisone, Roid Rage, and Moon Face

I had started drafting this post about a month back, and Dynamo (Steven Frayne) coming forward to speak of his Crohn’s disease seemed like a great reason to finish and post it.  Here’s the link to a wonderful The Mighty article that includes Dynamo’s video and more information on the “MoonfaceForDynamo” movement (link).

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I was prednisone dependent for most of college – being thrown into a flare anytime I dipped below 15mg a day.  Once I began biologics, starting with Humira, I only needed prednisone during a flare.  I don’t know if it was because the length of time I was on steroids or due to other factors, but 3 years ago, prednisone stopped working for me.  I was no longer seeing any benefits or improvement from it – only the negative side effects.  Thankfully, my doctors have trusted me and my body, and I have not been prescribed it during a flare since then.

My moon face while on prednisone was one of my biggest insecurities.  Hearing strangers mention it was one thing, but comments (even the most well-meaning) coming from family and friends were definitely rough.  A few weeks before my final year of college began, I was in Resident Assistant/Housing training for the fourth time.  I wasn’t able to go to the camp outing that year due to a ulcerative colitis flare.  Though my GI at the time couldn’t get me in, one of the campus clinic doctors was very concerned and ended up giving me her cell phone number in case my condition worsened.  Though she couldn’t do much, she wanted to do what she could to help keep me out of the hospital.  When training resumed after camp, one of my fellow staff members exclaimed, “Oh! You weren’t at camp because you were getting your wisdom teeth out!”  This is my clearest roid rage memory.  In my head, I was screaming, “no, I didn’t get my wisdom teeth out, stupid!  It’s because I’m on fucking prednisone!”  Since she was a team member I liked, and I knew it would be inappropriate to scream at people during training, I responded by explaining that I had not and it was a side effect of one of my medicines.  Though I felt like the Hulk on prednisone (and the steroid-induced insomnia didn’t help), I had become quite skilled at hiding my rage and keeping up my Bruce Banner front.

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My first hospitalization during the four-month-long c. diff ordeal, there was a mix up with my steroids that ended with a lot more than moon face.  I was with my parents in northern Michigan at the time, so they called and consulted with my GI downstate – prior to the c. diff diagnosis. They had me on patient-controlled analgesia (morphine) that also gave me a small dose automatically at a regulated/scheduled rate.  Though it helped with horrible pain of the combination of c. diff and ulcerative colitis, it made me less cognizant of the care I was receiving.  It wasn’t until they were coming in to give me what they said was my “second-dose of steroids” that day that I began to be concerned.  My GI had said 30 mg of steroids, but the hospital heard it as 300mg and did not question it.  They were attempting to give 3 100mg doses throughout the day.  They insisted on giving me the 2nd dose as I was beginning to fight back.  I got my family involved.  I was telling the staff that my GI never prescribed more than 45mg, so I knew this wasn’t what he recommended.  They called my GI back and he was outraged.  I was so glad that I fought back and they finally listened, but it shouldn’t have taken that much effort for them to realize they were administering much more medication than I should have been receiving.  Needless to say, I blew up like a balloon.  Think Violet Beauregard.  My fingers were slowly turning into Aunt Marge’s from Harry Potter, and they hurt so badly they needed to be iced.  Thankfully, the swelling didn’t last long, and I went back to normal prednisone moon face, but that is not an experience I would ever want to repeat.

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A few months after my c. diff was cleared, my primary doctor ordered a bone density scan, which showed signs of early osteoporosis.  That obviously wasn’t just from this event, but also from the years during which I was steroid dependent.  Steroids definitely have their benefits in reducing inflammation, but they do have many negatives as well.  Though prednisone once provided me relief, I am personally glad that I no longer tolerate them.  Each patient needs to weigh the pros and cons in their specific case and make their own decision from there.  Moon faces, unite!

The Agony of Clostridium difficile

Clostridium difficile (C. diff) typical comes on after normal gut flora is destroyed or altered by antibiotics.  It grows and multiplies – overpopulating the bacteria in your intestines.  C. diff damages cells and mucosal, triggers inflammation, and forms a yellow plaque over the damage.  Common symptoms are fever, cramps, abdominal pain, and uncontrollable diarrhea.

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Since I didn’t have a job lined up upon college graduation, I moved 4 hours upstate with my parents.  A few weeks after moving, I was admitted to the local hospital due to a UC flare, where they tested for C. diff among other typical labs.  Since I got worse over the following days, they called my GI downstate and decided to retest for C. diff – which returned as “positive” meaning I likely became infected in the hospital.  Since I hadn’t been on antibiotics in the last year, my doctors and I suspect it had something to do with how my body and my flora was reacting to Humira.  Having Clostridium difficile colitis and an ulcerative colitis flare at the same time is the second worse pain I’ve experienced, just below the pain I experienced from drug-induced lupus on Remicade.  During this week-long stay, I was hooked up to a pain pump with morphine and given steroids – too much at first, but I will cover that in another post.  The doctors and nurses at this hospital worked with my care team downstate as I was not established with a specialist in the area yet.

At its worst, I was going to the bathroom 40 times a day.  Most of the trips were between 3am and 8am – where I was running back and forth.  This resulted in the second accident I had where I pooped on the floor on the way to the bathroom.  Because I was embarrassed at the time and also knew how contagious C. diff is, I cleaned the mess up myself the best I could and hopped in the shower.  In retrospect, I am not embarrassed and should have asked for help, but this was a low point for me at the time.  Because of my frequent and numerous bathroom trips, I ended up losing 30 pounds within a week and a half and was extremely weak.  They began me on IV vancomycin and discharged me with a prescription for Flagyl after a week because they weren’t able to do much more for me.  I was told if things worsened when I got home, I should go to the larger hospital the next town over.

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Later that day, things took a turn for the worse and I ended up in McLaren Hospital.  The ER doctor who was assigned for my care was extremely rude and initially refused to treat me and admit me since I did not yet have a GI I was established with in the hospital system – even though I had just been in the hospital for a week and instructed to come there.  This is the first time I had ever encountered this as I had always been assigned a specialist in the hospital if I didn’t yet have one.  After some pushing, he ended up giving me IV fluids and potassium (since my levels were low) and then discharged me.  If you’ve never had a potassium infusion before, you are very lucky.  If it’s not mixed with enough saline, it can really burn.  Since I was turned away at McLaren Petoskey, I returned to the smaller hospital and they continued to manage my pain and switched me from oral to IV Flagyl and potassium.  They kept me for about another week and I also had a colonoscopy during this stay.

My GI downstate was still working with my doctors up north, but during my second week, he said he would no longer do this.  I was told if I wanted him to still be part of my care, I would have to move back downstate.  I was sent down with oral/liquid vancomycin and potassium powder mix, and I moved in with my grandparents.  I was still up from 3am – 8am running to and from the bathroom every day.  I remember watching The Night at the Museum (the original and Battle at the Smithsonian), Princess Diaries, and a lot of Ace of Cakes on repeat during these mornings as something to distract me from the pain.  My grandparents ended up taking me back into the hospital after a few weeks, and I still tested positive for C. diff.  I was admitted for just under a week.  I was given IV Flagyl and had another colonoscopy.  Though my C. diff wasn’t gone, I was starting to improve a bit and I headed back up north to my parent’s house.

When I returned to my parents, I became established with a GI out of McLaren hospital.  A few weeks later, I went back in through McLaren’s ER.  I had the same doctor as the first appointment, and he apologized for his behavior in my first appointment.  He gave me IV fluids and potassium again, and they admitted me.  During my stay, they set me up with an infectious disease doctor who did consults with me during this week-long stay, during which I did yet another round of IV vancomycin.

Once I was discharged, I saw the Infectious Disease doctor in her in the office to discuss the option of a fecal transplant and retest after Flagyl.  I still tested positive so they had me continue Flagyl, and we got the ball rolling for the stool transplant.  My cousin who lived nearby agreed to be the donor, and she had to go through multiple tests to rule out any diseases she may have that could be passed to me – HIV, hepatitis, infections, etc.  Though the results had come back and she had been given the green light, there were roadblocks in getting the procedure scheduled.  Because of this, I ended up back in McLaren hospital.  I was admitted and my gastro came to see me.  I asked for my infectious disease doctor to come do a consult as well, but she straight up refused.  She finally agreed to talk to me on the phone and had the gall to tell me that since I had C. diff for almost four months, what’s the problem in continuing to treat the pain while waiting another two weeks for my transplant.  Boy, did she hear it!  It wasn’t as if I had been leaving it untreated or refusing care this whole time, but I had been in the hospital six times and on six rounds of antibiotics.  This infection combined with my UC had left me with very minimal quality of life.  After pushing, she was able to get me scheduled for the next week.  They also let me stop taking the Flagyl that was making me feel sick, which I was thankful for since it wasn’t helping anyway.

Day of, I picked up my cousin’s sample and took the stool and the cheap blender I had purchased for the occasion and traveled to the hospital.  A NG tube placed by radiology – this is the first time I had one.  (A NG tube is through the nose then threaded down past your stomach to the beginning of your small intestine.)  There was lots of gagging and dry heaving while they placed the tube.  I threw up when they pushed the fecal transplant – I couldn’t taste it or anything.  It was just the feeling of the push.  The fecal transplant works by replacing the bacteria in your intestines with healthy flora.  From the first day into the hospital to the date of my fecal transplant was exactly 4 months.  I was thrilled that my C. diff cleared up completely within 48 hours after the fecal transplant.  If I ever get antibiotic resistant C. diff in the future, I would definitely push for this earlier in the process.