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.

Saturday, March 31, 2012

Trouble With Imuran

  UC = ulcerative colitis     GI = gastrointerologist     BM = bowel movement  

Around 2:00 AM Monday morning, I woke up with chills .  After tossing and turning for a few hours, I finally got up and took my temperature around 5:00 AM.  It was 102.3.  Since I'm on immunosuppressing drugs, I'd been told that at the first sign of infection, I should go in to be seen right away since my body can't fight it off properly.  Thinking this was the flu, I called in to work and went in to see a doctor.

THE MEDICAL CENTER

It took me a while to get my sub set up, and by the time I was headed to the doctor, my temperature had risen to 103.4.  When I arrived at my medical center, I wasn't sure whether to go to the GI area, who knew all about my situation and history, or the family practice area, who knew more about viruses and infections.  Well the desk I came to first was the GI desk, so I told her my situation (on immunosuppressants, rising fever, etc.) and asked where to go.  She made an appointment with the next available doctor in a half hour.  As I was waiting in the waiting area, feeling horrible and shivering every time I took my sweatshirt off, my temperature rose to 103.8.  I was starting to get pretty concerned about it since I know that if a fever gets high enough, it can start affecting the brain and even cause damage, but I wasn't sure exactly what that number was.  How long would I wait, and how high would my fever get?  I knew that with my medical situation, this exact scenario could come up again, and I started to wonder if and when I should go to the ER instead of waiting around at the clinic.  What if my temp was 104?  105?  I would still be waiting there...

By the time I was called back, I was dizzy, flustered, and a bit disoriented.  I told the lady taking my blood-pressure that my fever was rising and currently at 103.8, to which she gave a half-hearted, "Oh, that's too bad," and put me in the room to wait for the doctor.  When the doctor arrived, I asked him how high a fever should be before I should get worried and not wait around in a clinic but go straight to the ER.  He couldn't give me a straight answer but said that 103/104 was pretty high and cause for concern.  I asked him to take my temperature, and he said he didn't have the ability to do that.  I said, "Isn't that a thermometer on the wall right there?"  He said, "No," and started asking about my UC symptoms.  After I explained my situation and concerns a bit further, he told me to go to the lab to give a blood and urine sample, then go to the pharmacy to pick up some Tylenol to reduce the fever, then go home and rest and drink plenty of fluids.  I asked if there was anything else I should do to reduce the fever (as I was sitting there in a sweatshirt and scarf), and he said not really - maybe a damp cloth on my forehead.  I asked him to find someone who could take my temperature, and an assistant came in and used the thermometer that I had pointed out on the wall earlier to give me a reading of 103.4, then left.  Really?  Was NO ONE at this doctor's office concerned about my fever?  I was starting to wonder if I was over-reacting.

As I was walking out of the office, I tried one last-ditch effort to find out whether I should be worried.  I asked the same question of the girl behind the desk: how high does a fever need to get before I should be concerned about my immediate safety?  She didn't have an answer for me either, but at least had enough sense to call a nurse who would have a better answer.  As soon as the nurse heard the question, she told the girl to make me wait right there, and she rushed right over.  The nurse wouldn't even let me explain my situation - she interrupted me and said, "Before we talk, we need to get this fever down."  Finally!  She told me to take off my sweatshirt, scarf, and shoes, and gave me an immediate dose of Tylenol.  She wouldn't let me leave the area - she took my urine sample herself and had the lab come to me to draw my blood.  After discussing the whole situation with the nurse, I learned that I was pretty much AT that ceiling.  If it got above 104, I was at serious risk, and if it got up to 105, I could start seizing.  After confirming that my fever had gone down to 100.5, she let me go with instructions for keeping it down and told me to keep it below 102.  I felt much better.

Lesson learned: If this happens again, do NOT go to the GI area where they know nothing about fevers; go directly to the family practice area and ask to speak to a triage nurse.  Also, be your own advocate and don't give up, even if all the "experts" seem to be ignoring you.

THE FEVER'S PROGRESSION

When I got home, I kept an eye on the fever and continued with the Tylenol.  By evening I was feeling fine, and the fever was gone.  However, the next morning at 2:00 AM on the dot I was again awakened by chills.  The fever was back and on the rise, so I took more Tylenol and stripped down to tank top and shorts.  When it continued to rise, I  put the fan on me and started using a cool damp cloth on my head, but it didn't stop.  When it reached 102, I took a cool shower, which finally brought it back down, but as soon as I laid back down, it started rising again.  I continued battling the fever with these cooling strategies for seven hours, and it finally broke at 9:00 AM.  It jumped around a bit throughout the day, but remained low-grade and manageable.  By evening time, it was gone again.  The next morning my fever again arrived on schedule - 2:00 AM exactly.  I went through the same battle as the day before, but this time couldn't get it under control; even the shower didn't bring it down.  It was rising quickly and uncontrollably, and when it reached 103.5 I considered going to the ER.  Finally, as I was looking online for a 24-hour nurse hotline, it started to *slowly* go down but was still a battle to keep it under control for the next several hours, repeating the same pattern as before: jumping around a bit throughout the day and gone by night time.

This pattern is what had me curious.  I did a search online and on message boards for "Imuran" and "fever", and the only cases I could come across that had an unexplained fever arriving on a schedule like this told stories like mine that just got worse and worse, landing people in the hospital.  Several days and many tests later, they were diagnosed with something called "serum sickness."  I looked up the term online, and found out that it is a sensitivity to a protein in some medications, similar to an allergy.  Basically the body cannot tolerate the drug, and the only cure is to go off the medication.  The number one symptom of serum sickness is a high-grade fever that appears on a cycle and is gone within a day, and first symptoms can show up anywhere from one to three weeks of starting the drug.  (My first fever was exactly three weeks after starting the Imuran - one week since upping my dose from 50 mgs to 100 mgs.)  I decided to wait to take my morning dose on Wednesday until after I spoke with my doctor about this possibility.

Meanwhile, the results from the bloodwork and urine came back normal.  As I spoke on the phone with my regular GI doctor about the ins and outs of my situation on Wednesday afternoon, she ordered two more tests (chest X-ray to check for a lung infection and blood culture to check for infection in the blood) and told me that since my liver function was normal, I could go ahead and up my Imuran dosage as scheduled from 100 mgs to 150 mgs.  I asked about serum sickness, and she said that it was highly unlikely.  She said if I thought that's what it was and wanted to stop taking the Imuran for a day to see what happened I could, but she was concerned about my UC symptoms returning.  Well, the fever wasn't getting any better, and I wasn't getting any answers, and I knew if it happened again the next day the fever would have me in the ER, so I decided to go off the Imuran.  The fever was gone by that night and did not return the next morning, at least not like it had before.  It stayed below 100 and went back down to normal with some Tylenol.  By Thursday afternoon it was gone altogether.

CONFIRMATION

The fact that the fever disappeared after I went off the Imuran had me fairly certain that what I was experiencing was a reaction to the drug.  However, there are only two other drugs out there for my disease that I have not yet tried, and if those don't work, I'd be under the knife to have my colon removed.  So I felt like I had to be absolutely certain before I gave up on the Imuran, especially since my doctor and roommate (who is an EMT) so adamantly disagreed with my opinion about serum sickness.  So I decided to go back on the Imuran to see if the fever returned.  After consulting with my sister and cousin, I chose to wait one more day with no Tylenol or anything to prove that the fever was truly gone before testing my theory.  Well, my temperature stayed below 98.6 while I was off the Imuran, and then on Friday morning, I took a 50mg dose.  Ten hours later, my temperature was on the rise.  Luckily, since I'd been off the Imuran for two days and only had half a dose in my system, it only got up to 101.1 and was very manageable with Tylenol.  But this was enough to convince me that I had serum sickness.  My body will not tolerate Imuran.

NEXT STEPS

This leaves only two immunosuppressant drugs left for me: Humira or Remicade.  After doing the research, I found that Humira is less effective at treating UC (40% success rate compared to 60%) and takes up to two months to reach full efficacy, whereas Remicade can start working within a couple of hours.  This made my decision for me; my next adventure will be Remicade.  It is administered via a 2-3 hour blood infusion through an IV.  Treatments are more frequent at first (every couple weeks) but maintenance dose is every two months, which is manageable.

Today is Saturday, but on Monday I will schedule an appointment with my doctor to show her the detailed notes I took on exact times I took the Imuran, the Tylenol, and every time I took my temperature to show that my theory about serum sickness proved correct, and to discuss the transition from Imuran to Remicade.

I can't say I'm sorry to say good-bye to the Imuran.  It has had me feeling pretty much like crap ever since I went on it.  I am hopeful that the Remicade will be easier for my body to handle, therefore making it much easier to get back into my diet and exercise routine and work towards my fitness goals.  Either way, I'll be back on that horse starting Monday.  In my last post I ended with a line about when you stumble, you get back up, dust yourself off, and continue on.  Well, this was my stumble.  In this moment I am getting up and dusting myself off, and I am excited about continuing on.  I can't wait to get back into my running shoes, to lift those weights in my home-gym, to work on building that muscle.  I can't wait to continue fighting.


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:  hardly any cramping, loose BM 2-4x/day, tiny amount of mucous, tiny amount of blood, small amount of gas.

Prescription Meds:  azathioprine (100mgs), prednisone (35mgs), Asacol HD (4800mgs), mesalamine enema, Prilosec.

Current Side-Effects: constant fatigue, weakness, shakiness, elevated heartrate, arrhythmia, insomnia, increased appetite, occasional nausea, 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:  easy on the tummy (for fever, not UC) - chicken soup, saltines, peanut butter, scrambled eggs, potatoes, oatmeal.

Exercise:  none

Stats:  height 5'7", weight 145 lbs, body fat ?%.

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



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Saturday, March 24, 2012

Motivation

  UC = ulcerative colitis     BM = bowel movement  

"The cheif cause of failure and unhappiness is trading what we want most for what we want at the moment."  -Zig Ziglar

What I want (DESPERATELY) at the moment is to lie down and relax after a long day at work.  Instead, I lace up my running shoes and head out to beat the pavement, because what I want most is to reach my fitness goals.  One thing I have learned recently is how to be my own inspiration.  I have never met (nor can I find) anyone else who is trying to do what I'm doing, so I have to do it all on my own.

It may suprise some people that more days than not I actually consider skipping my workout, even when I'm healthy.  I have a little conversation in my head in which my inner couch potato tries to rationalize my need to rest to my inner athlete.  Every day I have to somehow dig up the motivation to make myself get out there.  This effect is tenfold when you add a dibilitating disease and intense side-effects from hardcore meds.

Another motivator:
new work-out clothes!
Motivating one's self can be one of the most difficult things about being an athlete.  When you have health challenges to boot, you do WHATEVER you gotta do to make it happen.  I've learned to take advantage of the moments of the day when I feel less fatigued.  If I think I can muster the energy now, I go now, because it might not be there in an hour.  In fact, it probably won't be.  Even if I'm tired, I remind myself that I will be even more tired later in the evening, so I'd better get it out of the way.

Today after work, I was so fatigued it took everything I had to finish grading that set of papers before I got in my car to drive home.  This is the precise moment that I had that conversation with myself on whether or not I would work out today.  I was sooo tired I could barely keep my eyes open and was leaning heavily towards the going-straight-to-bed plan.  But I knew I would regret it, so I didn't decide right away.  What I did instead was turn the radio station to a really upbeat song, crank the volume full-blast, and scream the lyrics at the top of my lungs all the way home.  By the time I pulled in my driveway, I was ready to go running.  The key to motivation is flexibility and creativity... you do whatever it takes to get you going.  Use a strategy until it no longer works, and then switch and find something else that does work.  You can always cycle back to it later.  A good mantra can also work well, if it's the right set of words for YOU.  Find a phrase that makes you feel empowered, pause the TV, and repeat it to yourself as you get off the couch, as you lace up your shoes, as you walk out the door.

When we feel like life is holding us back, it's usually more of a mental game than a physical one.  One other strategy I rely on heavily to keep myself going is visualization.  When I feel like I just can't run any further, I picture myself enjoying the end result of what it is I'm working towards.  I don't just picture what I want to look like (hint: defined abs), but I really feel what it's like to have it.  I envision myself as a super-fit athlete playing chasing games with my super-fit future-partner on our runs, looking and feeling fabulous together as we flirt in the sun.  Or I'll fantasize about scoring the winning points as the lead jammer in a roller-derby bout and impressing all my team mates in the process, high-fives and hugs all around.  Or winning a boxing match, or crossing that finish line as my friends and family cheer me on, or successfully fending off an attacker.  Whenever I lose myself in these dreams, I find myself running faster and farther with less pain and discomfort.  It doesn't matter what the dream is, as long as it keeps you going.

Facing the kinds of health challenges that some of us face on a daily basis for months or even years on end can easily lead us to feel like helpless victims of our own lives.  Yes, I am sometimes tempted to just give up, give in, and allow myself to drown in my own weakness and self-pity, letting the disease and the drugs take their toll.  More often than not, though, my challenges don't make me feel weaker, they make me feel stronger.  Let me explain...

My friends and family may be around to offer help when I'm sick or moral support when I'm down, but ultimately this is a journey I walk alone.  No one in my life will ever fully understand how much steel will power it takes for me to put on my running shoes when I am utterly exhausted, nauseated, and weak with stomach cramps.  None of them know how difficult it is to make myself KEEP running fifteen minutes in, when I start feeling that deep-set ache in my ribs or shoulders, signaling that my body is running out of glycogen or oxygen faster than it should because of the immunosuppressing drugs I'm on... as I force myself to continue, taking deeper breaths and silently urging my body to release the fat stores to give me the energy I desperately need to keep going.  No one knows how sometimes painful it can be thirty minutes in to clench up and continue pounding that pavement while even more blood is pooling up at the "out chute," begging to gush forth at the slightest jostle of the wrong muscle.  No one knows how much determination it takes to push myself for that hard kick at the end of my run that used to feel so envigorating but now makes me feel like my heart is going to explode due to the prednisone.  None of the other hundreds of runners at that 10k knows that I'm running the exact same distance as they are while carrying double the weight.  This is the journey that I walk alone.

All of this knowledge, though, does not make me feel helpless and sorry for myself, as one might think.  This knowledge makes me feel more powerful.  The extra challenges do not make me weaker than other athletes; they make me stronger than other athletes.  I am going the same distance, lifting the same weight, and making the same progress all while hurdling these huge obstacles that average athletes aren't contending with.  This knowledge makes me run harder, faster, longer.  It is what I was thinking about during my run today, and my pace ended up being faster than that of my last race.

We all have different challenges in life, and we have no choice but to play the hand we're dealt.  Don't allow your challenges to get in the way of living the life you want.  Don't allow what you want at the MOMENT to take precident over what you want MOST.  Whatever your goals are, whatever journey you're on, and whatever obstacles you're facing.... walk towards them head-on.  You may stumble along the way, but then you pick yourself up, dust yourself off, and continue on.  Learn to be your own inspiration, and fight for it.



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:  hardly any cramping, loose BM 2x/day, some mucous, some blood, moderate amount of gas.

Prescription Meds:  azathioprine (100mgs tapering on), prednisone (40mgs), Asacol HD (4800mgs), mesalamine enema.

Current Side-Effects: constant fatigue, weakness, shakiness, elevated heartrate, arrhythmia, insomnia, inability to concentrate/loss of focus, increased appetite, occasional nausea, moon-face, ultra-sensitive teeth, thinning skin, elevated white blood cell and platelet count, 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 – spinach/bell pepper scramble topped with salsa, whole wheat english muffin.  Lunch – large salad with diced chicken or turkey and low-cal dressing.  Snack – protein bar or rice cake with natural peanut butter.  Dinner – extra lean ground turkey, nonfat refried beans, bell pepper, and sharp cheddar in a whole wheat tortilla topped with guacamole, baked tortilla chips on the side.

Exercise:  Mon – 60 mins weight-lifting (upper body “push”).  Tue – run 2.5 miles, walk 2.5 miles.  Wed – 60 mins weight-lifiting (legs). Thu - run 3 miles, walk 1.5 miles.  Fri - 60 mins weight-lifting (upper body "pull").  Sat - skipped the long run due to an unforseen bad reaction from the previous night's alcohol.  (Lesson learned: do not mix alcohol with immunosuppressants.)

Stats:  height 5'7", weight 144 lbs, body fat 15%.

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


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Saturday, March 17, 2012

The Dread of Pred

  UC = ulcerative colitis     IBD = inflammatory bowel disease     pred = prednisone     BM = bowel movement   

There are a lot of hardcore prescriptions out there with a lot of nasty side-effects, but by far the most hated drug in the IBD community is prednisone.  It is extremely effective at getting severe flare-ups under control, so it is widely used to treat UC, but it comes with a plethora of loathesome and damaging side-effects including muscle and bone disintegration.

Most people who go on this drug for say, asthma, are only on it for a couple of weeks, so they don't get to experience all the "fun" that goes along with it.  When it is used for UC, however, standard procedure is to go on it at a high doseage until symptoms die down (typically between one and three weeks), and then taper off of it by dropping down five millograms per week, a process which takes months.  The tapering is important since your body becomes addicted very quickly; it can be dangerous to just stop pred all of a sudden.

The first time I went on it I was fifteen.  Within weeks I had gained about twenty pounds (at least half of that in my face, it seemed), and I was having random "fits" of a wildly racing heart, shortness of breath and uncontrollable crying.  I wasn't on it long.  Seventeen years later (last spring), when my doctor suggested prednisone as a treatment for my biggest flare-up ever, I was reluctant.  The doc tried to respect my wishes by trying a different drug first, but it proved ineffective, so I had to go on the pred anyway.  I was on it at full doseage (40 mgs) for four weeks to get my symptoms under control, and then I started the taper, which took two months.  However, three weeks after I ended my last dose, my symptoms returned, and I had to go back on it.  This time it took six weeks at the full dose and another two months to taper.  Five weeks after my last dose, my symptoms returned again, and now I am back on it for the third time as I wait for the Imuran (long-term treatment) to kick in.

During my torrid affairs with prednisone, here are the side-effects I have experienced:
  • weight gain
  • insomnia
  • fatigue
  • complete lack of healing ability (little bruises, cuts, hangnails, would stick around for months)
  • increased hair growth everywhere but my head (mustache, sideburns, neck, body, etc.)
  • moon face (picture a chipmunk)
  • acne
  • "buffalo hump" (fat accumulation on the back of the neck)
  • irregular heartbeat
  • all muscles turning to the consistency of jello
  • loss of bone density
  • ultra-sensitive teeth
  • light-headednes/dizziness
  • shakiness
  • weakness
  • hair loss (over half the hair on my head fell out)
  • joint pain
  • significantly blurred vision
  • loss of concentration/ability to focus
  • muscle cramps
  • ravenous appetite
  • constant bitter taste in my mouth
  • tingling hands and feet
I know this looks like a pretty standard list of "possible side-effects" for a lot of drugs out there, but keep in mind that I was actually experiencing ALL of these effects all at once.  The longer you're on it, the worse the effects get, and the worse the withdrawals are when you try to come off of it.

Because of the combination of fatigue, increased appetite, muscle loss, and increased fat accumulation, experts and experienced "victims" of the drug will tell you that it's pretty much impossible not to gain crazy weight while on prednisone.  This combination of side-effects is practically a death sentence for someone who is trying to be an athlete, like me.

When I went on it in June, I was weak and defeated, and I just suffered through the effects, gaining about twenty-five pounds in the process.  Then when I finally got off of it, I rejoiced and worked hard to lose that weight.  When I found out I had to go back on pred only weeks later, I was extremely depressed... for about a day.  Then all that depression turned into anger, which then turned into determination.  You want to get me to fight?  Piss me off.  Here was my attitude: "You say it's impossible to lose weight on pred?  WATCH ME."

Here was my thinking: my body couldn't pack fat onto wierd places (belly, face, back of neck) if it had no building blocks to work with.  So I severely limited my calorie intake.  My diet consisted of a protien shake and banana for breakfast, a can of organic veggie soup for lunch, and a cup of stir-fried veggies and chicken seasoned only with lemon and garlic for dinner.  If I got hungry in the evenings, I would have an apple or a rice cake with peanut butter.  My total calorie intake was around 1,000 per day, but on Saturdays I would allow myself one "cheat day" where I ate pretty much whatever I wanted to keep my body from going into "starvation mode".  I ate this way almost every day for a couple of months.  I was also going for long walks every afternoon.  My plan worked.  Not only did I not gain weight, but I actually lost weight at an amazing rate. ON PREDNISONE.  Unfortunately, a lot of that weight-loss was muscle due to the catabolic nature of the drug, but I still saw it as a win.  I turned a horrible situation into a victory and came out on top.  And then I vowed never to go on that horrible drug ever again.

When I found out a couple weeks ago that I had to break that promise, again I was extremely depressed... for about a day.  Then I decided to give myself another challenge.  Last time around I proved that it is possible to LOSE WEIGHT on prednisone.  This time I will prove that it is possible to GAIN MUSCLE.  My plan of attack will consist of lots of cardio and weight-lifting, a diet extremely high in protein and low in fats and sugars, various nutritional supplements that promote muscle growth, and as much sleep as I can get.

Before this last round of symptoms took me out of commission, I was half-way through my training for a half-marathon, and I was also starting to dabble with weight-lifting and figure building.  When my symptoms got bad, I took a few days off my training, and then when I started the new drugs two weeks ago, the Imuran completely wiped out any ideas I had of exercise (see previous post), and my diet has been less about what is healthy and more about what I can stomach.  I imagine the challenge I have set up for myself will be even more difficult now with the side-effects of the Imuran to deal with, but I am determined not to let these drugs run my life.  Now that my body has had a little chance to adjust, I am going to try to get back into a training regimen starting on Monday.  I don't know how successful I will be, but if I do go out, I sure as hell am gonna go out fighting.


T H I S   W E E K ' S   H E A L T H   L O G
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My Condition:  Mild/moderate ulcerative colitis since 1995, severe pancolitis since 2011.

Current Symptoms:  Cramping 3-5x/day, very loose BM 5-10x/day, mucous, a lot of blood with every BM, moderate amount of gas.

Meds:  Azathioprine (50mgs tapering on), Prednisone (40mgs), Asacol HD (4800mgs), mesalamine enema.

Current Side-Effects:  fatigue, nausea, insomnia, weakness, shakiness, irregular heartbeat, increased appetite, nervous energy, bitter taste in my mouth, hot and cold flashes, ultra-sensitive teeth.


Supplements:  Not started yet.

Diet:  No restrictions at the moment.  Plan to clean it up starting Monday.

Exercise:  None for the last two to three weeks.  Plan to pick up my workout routine starting Monday.

Stats:  height 5'7", weight 148 lbs, body fat 17%.

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



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First Week on Imuran

  UC = ulcerative colitis          BM = bowel movement  

I intended to start this blog about two weeks ago when I first started taking Imuran.  That plan was short-lived when the drug hit me like a Mac truck.

I have been putting off immunosuppressants for as long as possible because they are scary.  From my research via doctors, medical websites, prescription reviews, and message boards, I know that Imuran (a.k.a. azathioprine) can cause a host of very serious health problems ranging from various cancers to deadly infections.  As a teacher with no immune system, I would have to be very vigilant and cautious since any little cold if not treated right away could put my life at risk.  In addition, the drug can cause a variety of other side-effects, the most common ones being severe nausea, headaches, and hair-loss.  However, at this point in the progression of my disease, I am out of options.

I took my first pill hesitantly, expecting the nausea to be immediate.  I was wrong.  I felt fine.  "Well, maybe this won't be so bad, after all," I said to myself.  I also felt fine the next day and prepared myself to go about this whole immunosuppressant thing with a positive attitude.  I knew it wouldn't be easy - hell, I was still sick and I was going back on the dreaded prednisone (more on this later), but I was ready to make the best of it.  I was prepared to face the struggle; I was prepared to battle the side-effects of prednisone and the symptoms of my disease.  I was NOT prepared for Imuran.

By day two I felt like I was dying.  I woke up so exhausted I could barely get out of bed and so nauseated I couldn't even get down a single bite of food.  Little daily tasks like going to the bathroom or making myself a sandwich felt like I was climbing Mount Everest.  Every action I had to make throughout the day took an immense amount of will-power and left me drained.  By lunch I had worked up a little bit of an appetite and ate something, which only made me feel worse since digesting food took up too much energy.  As soon as I got home from work I crawled into bed and did not come out.  This is the pattern I kept for the rest of the week; I was like a zombie walking around at work.  More fatigue, more nausea, more fatigue, and every day crawling under my covers as soon as I walked through the door of my house.

This lasted for exactly one week.  Somehow on day eight - overnight - I felt better.  Not chipper, but better.  Over the next week I was still tired all the time and still coulnd't eat much in the mornings, but at least I was able to function. Now, at the end of week two, I am still feeling pretty crummy, but I am hoping to try and get my life back.  Three weeks ago I was eating super healthy, weight-lifting, and training for a half-marathon.  Starting Monday, I'd like to get back on that horse.  Maybe I won't be going full speed, but at least moving forward.  I know sticking with my fitness goals will be more difficult as I wage war against the side effects of the Prednisone, the Imuran, and the symptoms of my disease... but I'm a fighter, and when things get tough, I get determined.


T H I S   W E E K ' S   H E A L T H   L O G
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My Condition:  Mild/moderate ulcerative colitis since 1995, severe pancolitis since 2011.

Current Symptoms:  Cramping 3-5x/day, very loose BMs 5-10x/day, mucous, a lot of blood with every BM, moderate amount of gas.

Currently Taking:  Azathioprine (50mgs tapering on), Prednisone (40mgs), Asacol HD (4800mgs), mesalamine enema.

Current Diet:  No restrictions at the moment.  Plan to clean it up starting Monday.

Current Exercise:  None for the last two to three weeks.  Plan to pick it up starting Monday.

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


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The Backstory

Of all the diseases and health conditions out there, this is probably one of the grossest.   If I had something dramatic and wasting like lupus or cancer, people could feel sorry for me with style.  Instead, they look at me and think "poop disease".  Not a very romantic condition, let me assure you.  (Believe it or not, though, it has actually come up on more than one first date; talk about a first impression.)

I have a long list of illnesses (see them here), but the first main event was when I was diagnosed with ulcerative colitis (UC) at age fifteen.  For those who don't know, it is a chronic inflammatory disease of the colon that causes the inside of the intestinal wall to become covered in tiny bleeding ulcers.  It's hallmark symptoms are abdominal pain, cramping, diarrhea, mucous, blood, and gas.  (These symptoms - along with my first colonoscopy - did wonders for my confidence and self-esteem as young teenager, let me tell you.)  It can range anywhere from mild to severe and can affect anywhere from a few inches to all five feet of the large intestine.   I have actually been very lucky in that most of my life my disease for the most part has remained fairly mild and pretty easily controlled through medication.  Only the bottom twelve inches of my gut were affected.

About a year and a half ago, however, I encountered some major life-changes.  I left southern California to settle up here in the bay area.  I ended up getting a full-time teaching job that was very stressful (teaching seven grade-levels in one day at a school for behaviorally challenged kids) and that required me to go back to school full time at night.  I did not have time to eat or sleep much less grocery shop or cook.  I basically lived on fast food.  Needless to say, by the end of that school year my UC was out of control.  When I went in for a colonoscopy in May of 2011, the doctor found that the UC had spread to my entire colon, now making my diagnosis "severe pancolitis."  This was the first time in my life that the disease took charge.

My condition was so bad that I had to take a medical leave of absence from work during the last month of the school year.  I was in severe pain every hour and rushing/hobbling to the toilet 20-25 times a day.  I stopped eating (too painful) and lived off of broth and apple juice, which did not really even get absorbed properly since my colon was non-functional.  I was severely malnourished and dehydrated and losing a huge amount of blood every minute of every day.  All this caused me to be too weak to get out of bed for about a full month.

My standard tried-and-true prescription drugs that have been with me for seventeen years (all mesalamine variations) were no match for the disease I was now facing.  However, with the use of prednisone (this is a whole other issue in and of itself which I will go into in a later post), I was able to slowly get things under control, and I spent the summer healing.  About three weeks after coming off of prednisone, though, my symptoms returned, causing me to have to go back on it.  I tried going off of it again this last winter, and again, the symptoms returned.  I am what the doctors call "prednisone dependent."  Since it is such a damaging drug, no doctor in their right mind will recommend prednisone for long-term treatment, which only leaves one type of drug therapy left for me: immunosuppressants.


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