Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Sunday, April 22, 2012

Enter Remicade

  UC = ulcerative colitis     GI = gastrointerologist     BM = bowel movement  

On Wednesday I had my first Remicade treatment.  Since I had such a crummy experience with Imuran, I was a bit nervous about potential side-effects when I went in, but I was hopeful that if I had any they would be limited to the day of and the day after my treatment.  Here's how it went in case anyone out there is wondering what the process is like...

I originally thought I'd be able to do the treatments at the medical center a couple miles from my house, but as it turns out I had to drive to a cancer center one town over where they administer infusions.  After I explained to the receptionist that I don't have an oncologist, filled out the standard paperwork, and gave my weight, height, etc. just like any other doctor's appointment, they took me back to a small room with a vinyl cushioned reclining chair and other medical equipment and supplies.  The room I was in was a single, about the size of a doctor's office, but the main infusion room is larger with three chairs.  I had two nurses popping in and out of the room at various times.  First they gave me a dose of both Tylenol and Benadryl to prevent any fever or allergic reactions to the Remicade.  (Common side-effects for Remicade are headache, nausea, fever, rash, and other skin irritations.)  Then they put the IV into my hand and taped it down, running a saline drip as they waited for the Remicade to get prepared in another part of the building.  They also gave me a dose of Solumedrol through the IV, which is a steroid (similar to prednisone) in order to further prevent any bad autoimmune reactions to the Remicade.

Once they hooked up the bag of Remicade to my IV, they started it at a very slow drip (I guess just in case I had a bad reaction?), and then over the course of about an hour they slowly increased the rate of the drip until it was at full speed.  After that it took about another hour for the rest of the bag to drip into my system.  During the course of the infusion, the nurses were coming in every couple minutes to check on me, take my vitals, write in my chart, and adjust the infusion rate.  I spent the first hour reading on my Kindle, and then I started to get a bit sleepy from the Benadryl, so I reclined the chair, covered up with the provided blanket, and rested my eyes for the next hour.  Once the bag was empty, they disconnected me and sent me on my way.  The whole process from start to finish took just barely over three hours.  They go more slowly with first-timers though, so my next infusion should take a little less time.

I was prepared to deal with the headaches, nausea, etc., during and after the infusion, but surprisingly enough, I never felt a single side-effect.  In fact, the next day my mood and energy levels were better than they'd been in months.  It's been three days, and so far I have not noticed any changes in my UC symptoms (still waiting for a solid poo!), but sometimes it can take a week or two for the drug to take effect.  I know that occasionally reactions to the Remicade can happen at the second or third treatment, but my first infusion went without a hitch, and so far things are looking promising.  I do wonder if I would have had a reaction had they not pre-dosed me with the Tylenol, Benadryl, and Solumedrol, but either way it worked well.  Maybe this will be the drug for me!  The first three treatments are considered "loading doses", and they happen two and four weeks apart.  (So my next treatment will be in a week and a half.)  After that, the maintenance infusions will happen every eight weeks.  Occasionally patients find that their symptoms come back towards the end of the eight-week round, in which case they may shorten the time in between treatments to six weeks instead of eight.  Either way I'm looking forward to seeing if my next infusion goes as smoothly as my first.

On another note, I rolled my ankle on my Thursday trail run and ended up with a pretty bad strain.  I can deal with a sore ankle, but what I can't deal with is another obstacle to get in the way of my training!  Because of all the time I had to take off last month for various reasons, I have absolutely NO wiggle room left between now and the half-marathon next month.  I wore an ankle brace to work on Friday and then spent all day Saturday (when I was supposed to be running a seven-miler) off my feet icing and elevating.  It felt a lot better by this morning, so I wore my brace and went on my seven mile run.  It felt fine during my run (what slowed me down was the heat!), and then I iced it right after.  Hopefully it will continue to get better, and I will be able to maintain my training from here on out without a hitch.  Fingers crossed!!
Post-run lunch: grilled chicken, peppered turkey, sprouts, spinach, avocado, mustard & laughing cow cheese on toasted sprouted grain bread with an apple on the side.  Yummy AND healthy!

T H I S   W E E K ' S   H E A L T H   L O G

My Condition:  mild/moderate ulcerative colitis since 1995, severe pancolitis since 2011.

Current Symptoms:  almost none - loose BM 2/day, small amount of gas.

Prescription Meds:  Remicade, prednisone (20mgs), Asacol HD (4800mgs), mesalamine enema, Prilosec.

Current Side-Effects:  (all from prednisone) occasional weakness/shakiness, weight gain, moon-face, sensitive teeth, anemia/low hemoglobin count (carries oxygen from lungs to rest of body).

Supplements:  creatine, BCAAs, CLA, L-glutamine, glucosamine, whey protein (post workout), casein protein (before bed), Omega-3, calcium, vitamin D, vitamin C, biotin, multi-vitamin.

Diet:  Breakfast - 6oz. Odwalla Superfood, spinach scramble topped with salsa, whole wheat english muffin.  Lunch - large spinach salad w/ diced chicken and hard boiled egg, low-cal dressing.  Dinner - diced chicken, bell pepper, onion, & black beans (all grilled together) in a whole wheat tortilla, 2% grated cheese.  Snacks - (1-2 per day) apple, wheat thins & sharp cheddar, protein bar.  (Binge: Wednesday - whopper, fries & shake.)

Exercise:  Mon - 60 mins weight-lifting (upper body "push").  Tue - ran 4.3 miles.  Wed - none (Remicade infusion).  Thu - ran 4 miles.  Fri - none (rested strained ankle after walking on it all day at work).  Sun - ran 7 miles (5 mile jog, 2 miles speed work).

Stats:  height 5'7", weight 150 lbs, body fat ?%.

Have Tried:  Imuran, Lialda, Endocort, Prednisone (dependent), Canasa, Cortico-foam, probiotics, L-glutamine, licorice, various other supplements, Specific Carbohydrate Diet, FODMAP diet, various other dietary changes.

Feel free to leave reactions and comments below...
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  1. Just wondering how everything is going on the Remicade. Hope you continue to do well!

    1. Thank you, Anonymous. I have posted an update to how I'm doing on the Remi. Click on... you guessed it, "Update" under "July" at the top left of this screen. ;-)

  2. UPDATE ABOUT THE SULUMEDROL: I found out at my next infusion appointment that the Solumedrol was given to me by mistake. The instructions in my chart said to have it handy and use it only in the case of a severe allergic reaction, but the technician read the directions wrong and gave it to me before the infusion started. The manager apologized profusely for the mistake. In my two other infusions since then, there was no Solumedrol, but I still felt fine and had nothing more than some mild temporary itching during infusion #3.

  3. My brother did this for year (he has chrons), he didn't have any side effects, other than he would start feeling bad the week or so leading up to his appointment.


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