I have a long list of illnesses (see it here). In 1995 when I was 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 fibromyalgia, the most debilitating illness of all. (Read "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...
  Previous Post                                                                                                              Next Post  

Sunday, April 15, 2012

Progress

  UC = ulcerative colitis     BM = bowel movement   

"Without struggle there is no victory."  -Me

I am sitting up in bed with my laptop in front of me, utterly sore from head to toe.  Sunday is my day to rest and recover, and my body needs it; I have put it through the wringer this week.  Towards the end of my weight-lifting sessions, when I can barely hash out those last couple reps as my muscles are shaking and I'm grunting out an audible shout to get that barbell up, or towards the end of my runs when both my mind and body are exhausted and begging to give up, and I have to reach down to my toes for the determination to keep going, I tell myself, "This is where I live."  Though it seems like misery at the time, making it through that place of struggle is what gives me such a sense of victory at the end of my workout.  It's where I need to get cozy, because that is where the real progress is made.

When I started the prednisone this time around, I set a goal for myself: to gain muscle.  Well, I am about half-way through my prednisone stint, so I figure it's a good time to check in on my progress.  My training has been a bit spottier than I had hoped: I have had to take a lot of days off due to symptoms, side-effects, bad reactions to the meds, and a couple other things, but each time I have jumped back in to my training as best I could, and so I have been making some slow progress.

In order to build new muscle you need to provide your body with the building blocks to do so, which means a calorie deficit would be counterproductive, especially on a catabolic steriod.  Therefore I have been eating more calories this time around - including lots of protein - and though my weight has fluctuated a bit, I have not really lost any noticeable fat since I started the prednisone.  I have, however, gained a small amount of muscle, as can be seen in these pictures.  (Apologies for the lack of focus - it's a bit difficult to keep the camera steady while taking pics of yourself at odd angles, LOL.)  Keep in mind that this is only a step in the right direction and a work in progress.  I did not take any "before" photos, but I can assure you that the little bump of a bicep in this pic was not there at all a month ago, and the shoulder and calf muscles were much less developed.  In fact, back in January all of my muscles were literally a floppy jello consistency because of all the damage the prednisone caused the first two times around in the last year (combined with severe malnutrition on the first round and a low-calorie diet on the second round).  There are other muscles that have grown, but they are hiding under a small layer of fat and are not very visible yet.

So far when it comes to my weight-lifting, I have only been working on building a strong foundation, which means high repetitions of low weight.  Every time I felt I was ready to start really bulking up, that is when I ended up having to take time off, which resulted in me starting back in with foundation-building again.    However, this last week I noticed that the weight I have been lifting this entire time (10-lb dumbbells, 40-lb barbell) felt way too easy - too light.  This is another sign that I have actually built muscle, and so it's time to start adding weight.  I went up to the 15-lb dumbbell on Friday and have added another 10 lbs to my barbell for next week (may add more than that for the squats and deadlifts).  Over the next couple weeks I will start lowering the reps and adding even more weight in order to get larger and faster muscle growth.

The other goal I have been working towards is training for a half-marathon.  Back in December I signed up for one that will be held on May 27th.  I had planned enough time for me to reach 13.1 miles in my training, plus a few extra weeks of wiggle room.  With all the time I have had to take off in the last month or two, I figured that making the half-marathon I signed up for was a lost cause.  Yesterday, though, I counted up the weeks and worked out that it is still a slight possibility IF I haven't lost too much ground, but it would mean pushing myself pretty hard with vigorous training between now and then, and it leaves no room for error.  I am going to continue training as hard as I can while trying to avoid overuse injuries, but I won't beat myself up if I don't make it by May 27th.  I know I have been through a lot this year, and I can always sign up for another one a bit later in the summer.  However, if I am able to run that half-marathon on May 27th, I will be over the moon!

The only potential obstacle I really see at this point is the Remicade.  I start my first infusion on Wednesday, and there is no predicting how I will react.  Best-case scenario is that I have no side-effects and am able to continue with my progress uninhibited.  Worst-case scenario is that I have major side-effects (common are fatigue, headache, nausea) or a bad reaction or intolerance to the drug, which could cause me to lose even more days of training.  At this point, though, I am feeling strong and remaining optimistic.  I'm ready to start really tacking on the miles and the weight, ready to throw 110% into my training, ready to see some real progress.


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:  prednisone (25mgs), Asacol HD (4800mgs), mesalamine enema, Prilosec.

Current Side-Effects:  mild weakness, mild shakiness, occasional fatigue, elevated heartrate, arrhythmia, insomnia, moon-face (still growing), ultra-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, 3-egg spinach scramble topped with salsa, whole wheat english muffin.  Lunch - large spinach salad w/ 1-2 diced chicken tenderloins and 1 hard boiled egg, low-cal dressing.  Dinner - 1 cup chicken/veggie stir-fry seasoned only with lemon & garlic, 1/3 cup rice, 1/4 crunchy chow mein noodles, 3 giant strawberries.  Snacks - apple, protein bar.  Drinks - water only, Gatorade during workouts.  (Binges: Thursday- huge chimichanga @ dinner out with coworkers, Saturday- mac 'n' cheese, ice cream.)

Exercise:  Mon - 60 mins weight-lifting (upper body "push"), 20 mins leisurely bikeride.  Tue - none (messed up cal intake, severe weather).  Wed - 60 mins weight-lifting (legs), 20 mins leisurely bikeride.  Thu - ran 3.5 miles.  Fri - 60 mins weight-lifting (upper body "pull").  Sat - ran 6 miles (hills!).

Stats:  height 5'7", weight 148 lbs, body fat 16 %.

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...
  Previous Post                                                                                                              Next Post  

Sunday, April 8, 2012

Getting Back in the Game

  UC = ulcerative colitis     GI = gastrointerologist     BM = bowel movement  

"It's hard to beat a person who never gives up."   -Babe Ruth

Regardless of how determined we are, we all hit roadblocks sometimes that cannot be avoided.  Whether it's due to injury, illness, work or family emergencies, holidays, stress, lack of motivation, etc., we all end up having to take breaks from our workout routines at some point or another.  This does not mean, however, that we are giving up; when the roadblock has passed, it's time to get back in the game.  But we can't just pick up where we left off, or we risk injuring ourselves.

A few weeks ago, I had taken a couple weeks off due to my UC symptoms and initial Imuran side-effects.  I was not back into my workout routine more than two weeks before I had to take another week off (last week) due to the high fevers and a bad reaction to the Imuran.  As I am waiting for my new medication to get approved by my insurance, I have a two-week window where I am not on immunosuppressants, which means I've been feeling better than I have in many weeks.  This week I have thought a lot about maximizing my return to my workout routine.  Since I am illness and injury prone (think mega shin-splints), I have to be careful about how I go about it... as we ALL should when coming back after a break.

Where to pick up is going to depend on how long the break lasted.  If it was a week or less, you can probably just pick up where you left off without much problem.  However, if it was more like two or three weeks off (or longer), you will have to ease back in to things.  You need to get your body used to working out again, re-build that foundation, and trigger your muscle memory.  Whether you're talking about weight-lifting, running, or any other type of sport, a good rule of thumb to go by is to return at between 50% - 75% of where you left off, depending on how long you were gone.  If it was a week or two, you can probably jump in around 75%, but if it was longer, you want to drop it down to 50% and build from there.  The good news is that you can increase much more quickly than if you were starting from scratch.  If you have repeated an exercise many times before, your muscles will remember those motions and re-build the muscle there much more quickly.

I wish there was a formula for how fast to increase mileage or weight, but the truth is that if there is one thing I've learned from all my years of research and expereience in health and fitness, it is that everyone's body responds differently.  Therefore, the biggest rule to always live by is listen to your body.  You should obviously expect some soreness when returning to your routine, but during and after your workouts you want to pay close attention to your body and watch out for any fatigue, twinges or stiffness in unusal areas or any acute pain.  If you notice any of these, dial it back a notch.  If you feel strong and good to go, increase your recovery pace a bit.  On Tuesday I was feeling a bit weak during my run, and my energy ran out quickly, so I only ran 2.6 miles, which is about 75% of what I was running during weekdays before my break.  Same with my leg work-out yesterday.  However, Thursday I felt strong and energetic, so I ran about 4 miles.

By the end of that run, though, I noticed a bit of a twinge in my shin-splint areas.  So when I got home, I made sure to RICE my legs for twenty minutes.  RICE = Rest, Ice, Compression, Elevation.  This is a routine I do quite often after workouts to both treat and prevent shin-splints, but you can use it to treat any type of minor injury or to prevent overuse injuries to trouble areas.  Immediately after my workout I take two re-useable cold packs out of the freezer and wrap them tightly to my lower legs with ACE bandages and then prop my legs up on some pillows for twenty minutes.  This hits all four points of RICE treatment and reduces inflammation to the area.  You can also use NSAIDs such as ibuprofen for the same purpose, but only AFTER your workout.  You never want to take a pain-killer before your workout because that pain is an important signal from your body telling you to slow down, and you need to listen to it; otherwise you risk further injury and longer set-backs.

Another thing to keep in mind is to give your body adequate time to recover.  While you're getting back in the game, do not do the same exercise type two days in a row.  This will give your body a chance to re-build muscles, joints, tendons, and ligaments between workouts.  However, it is a good idea to cross-train on your off days to keep up with strength and endurance.  Doing different types of exercises will strengthen different areas of the body and not only improve your progress in your sport of choice but will also help prevent injury.  (This is actually a rule I live by all the time anyway for exactly those reasons.)  Additionally, you don't want to do any heavy or intense programs while you're re-building your foundation.  High intensity interval training (HIIT) is all the rage right now as the best way to increase strength, endurance, perfromance, etc.  I love HIIT and highly recommend it, but if you're coming back from a break - especially if it was due to illness or injury - you should stick with slow and steady workouts until you have built a solid base.

I know I personally have an extremely difficult time reigning in my enthusiasm and motivation to go faster and do more when I'm coming back from a break, but it is an important skill to learn unless we want to end up setting ourselves even further behind with overuse injuries.  However, if you are careful and learn to listen to your body, you can recover from a break pretty quickly and maximize results.  I'm looking forward to getting through this recovery time so I can really throw myself into my workouts and start seeing some great progress.


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:  no cramping, loose BM 2-4x/day, tiny amount of mucous, miniscule amount of blood, small amount of gas.

Prescription Meds:  prednisone (30mgs), Asacol HD (4800mgs), mesalamine enema, Prilosec.

Current Side-Effects: weakness, shakiness, occasional fatigue, slightly elevated heartrate, arrhythmia, slight insomnia, increased appetite, moon-face, ultra-sensitive teeth, thinning skin, 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 - 8oz. Odwalla Superfood, spinach/bell pepper scramble topped with salsa.  Lunch - 1c teriyaki chicken/veggie stir-fry, 0.5c rice.  Dinner - large spinach salad w/ diced chicken and hard boiled egg, low-cal dressing.  Snack Choices - (two per day) sugar-snap peas with hummus, wheat thins and cheddar, a couple handfuls of cashews, an apple and peanut butter.

Exercise:  Mon - none (messed up my meds and had a REALLY crummy day).  Tue - ran 2.6 miles.  Wed - 60 mins weight-lifting (legs).  Thu - ran 4 miles.  Fri - 60 mins weight-lifting (upper body "pull"). Sat - ran 6.4 miles.

Stats:  height 5'7", weight 146 lbs, body fat 16 %.

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...
  Previous Post                                                                                                              Next Post