Wednesday, April 16, 2014

Diary of a Crohn's Flare: a bad day

Taking my prednisone and azathioprine doses in the morning has really helped reduce my problems with night sweats.  I am still having night sweats but they are drastically less bad.

However,

The last several nights (including last night) gut pain has awakened me multiple times.  It feels like a partial small bowel obstructions (abdominal bloating, with sharp stabbing pains) and eating makes it worse.

This morning I took a 1/2 norco pill as soon as I got up for the morning and then 30 minutes later I took a generic Levsin to help reduce the cramping pain.  Over an hour later my pain levels were still shooting up to 6 on my pain scale, so I took another 1/2 pill and stayed in my hotel room until noon.

I am still getting sharp shooting pain and it still feels like a partial small bowel obstruction.  The only reason that I think it isn't one is because I am able to have bowel movements and those do temporarily reduce my pain and discomfort.  My abdominal bloating does seem to have reduced a bit too.

At noon, the pain was mostly manageable so I packed up my work stuff and went into work.  I have some work that it'd be really good to complete today.  Plus there's a chance the computer company shipped my replacement computer (my display is very messed up) and I'd like to get that fixed as soon as I can.

Tuesday, April 15, 2014

Diary of a Crohn’s Flare: Prednisone (my arch nemesis)


Since 3/17 I’ve been on an extremely high dose of prednisone (60 mg/day for a week, then 50 mg/day for 3 weeks, and 40 mg/day since then).  The prednisone is supposed to help reduce inflammation which the doctors think is causing my eating problems.

My eating problems consist of whenever I eat anything (low-reside or even fluids), my stomach bloats tremendously.  My waist gains 4 or more inches from this bloating when it happens.  After bloating my gut begins to hurt a great deal and all movement in my gut slows down or even stops for a while – it’s like having a partial small bowel obstruction every time that I eat.  It’s made worse when I eat a lot.

I haven’t had to take prednisone in a very long time, since 1998.  During my Crohn’s flares of that period I had been on prednisone for up to two years at a time.  I suffered from all sorts of symptoms from the prednisone and actually came to almost feel physically ill when I had to take it (because I knew it was causing many of my issues).

As I learn my new “rules” for handling my Crohn’s flare, I thought I’d also write about how I’m dealing with the prednisone on this go around.  Here’s a list of common and severe side-effects of prednisone from NIH.

Common

  • Headache
  • Dizziness
  • Difficulty falling asleep or staying asleep
  • Inappropriate happiness
  • Extreme changes in mood
  • Changes in personality
  • Bulging eyes
  • Acne
  • Thin, fragile skin
  • Red or purple blotches or lines under the skin
  • Slowed healing of cuts and bruises
  • Increased hair growth
  • Changes in the way fat is spread around the body
  • Extreme tiredness
  • Weak muscles
  • Irregular or absent menstrual periods
  • Decreased sexual desire
  • Heartburn
  • Increased sweating

Severe

  • Vision problems
  • Eye pain, redness, or tearing
  • Sore throat, fever, chills, cough, or other signs of infection
  • Seizures
  • Depression
  • Loss of contact with reality
  • Confusion
  • Muscle twitching or tightening
  • Shaking of the hands that you cannot control
  • Numbness, burning, or tingling in the face, arms, legs, feet, or hands
  • Upset stomach
  • Vomiting
  • Lightheadedness
  • Irregular heartbeat
  • Sudden weight gain
  • Shortness of breath, especially during the night
  • Dry, hacking cough
  • Swelling or pain in the stomach
  • Swelling of the eyes, face, lips, tongue, throat, arms, hands, feet, ankles, or lower legs
  • Difficulty breathing or swallowing
  • Rash
  • Hives
  • Itching


Of these, I dismiss the swelling or pain in the stomach as due to the Crohn’s and don’t attribute it to the prednisone.

Here’s how I deal with the rest of them:
Problems sleeping:
I’m now taking the prednisone in the morning rather than the evening.  I’ve seen it suggested that this will reduce the impact of the prednisone on my sleep cycle.  So far, I haven’t noticed an improvement; however, I have noticed that my night sweats have reduced in severity and frequency.  These also interrupted my sleep cycle so that’s a minor improvement at least.

Acne, hair growth, & increased sweating:
I just deal with it.

Muscle weakness & fatigue
The fatigue for me is a general sense of exhaustion.  I get done with the day and just don’t feel like I can do any more.  So far, I have been able to force myself to go for runs on days I’ve decided to do so.  So far, the fatigue melts away after a half mile or so of running.  The fatigue hasn’t prevented me from doing a run but it takes a lot more will-power to do workouts when I’m on the prednisone.
The muscle weakness is a problem though.  Before the prednisone I could run stairs three at a time.  After the prednisone it is extremely difficult to take the stairs 3 at a time.  Sometimes even taking those 2 at a time is a challenge.  About the only thing I can do for the muscle weakness is to go ahead and exercise them when I can.  This means taking the stairs whenever I can and running the stairs 2 or 3 at a time.

Dizziness & lightheadedness
In general, this happens to me more frequently when I have been doing vigorous activities (although sometimes it just spontaneously happens without me doing anything in particular to cause it).  There’s not much I can do for it other than to try to not drive or switch drivers when it happens.
When the dizziness / lightheadedness occur due to physical activity, I’ve found that a “fuel” (like Gatorade) helps me.  Now I am taking some Gatorade with me for any work out activities; even walking or weight lifting that didn’t require fueling before.  This helps me a lot.

Shaking hands
I do not know why prednisone can cause shaking hands, but this has happened to me about 4 times over the last 6 weeks or so.  My hands and arms shake/tremble 20-30 minutes.  After a while the episode dies down and I feel normal again.  Not sure what I can do about it.

Swelling, tingling, pain, and numbness in the various extremities
The prednisone causes swelling (edema) in my lower legs plus pain and numbness in my legs, feet, arms, and hands.  My face also swells (the moon face) and I get puffy around my eyes.  I believe all of these symptoms are due to the water absorption in the tissues.
My understanding of this is that prednisone causes your body to hang onto sodium and get rid of its potassium.  To counter-act this effect, I’ve begun to reduce my sodium intake and increase my water and potassium intake.  I now take 4 (OTC) potassium tablets / day.  I also have a prescription for a diuretic that should help reduce the swelling in my legs (I took my first one today).  Diuretics also tend to cause you to excrete potassium so it’s important to take some potassium supplements to replace the potassium that you lose.  I’ll write again later about whether the diuretic helps with the tingling, pain, and numbness (my recollection is that it does help).
You can or should also try to put your legs up when you have an opportunity.  This will help reduce the swelling some.  I’ve also heard that exercise helps your body naturally reabsorb the fluids from the tissues in your lower extremities.
So far none of these things has magically eliminated the problem, but each of them seems to help reduce the immediate symptoms of the problem.

Vision problems
I find that my eyes lose the ability to focus when taking prednisone.  After sitting all day working on a computer I find it exceedingly difficult to focus on anything at a distance.  This was happening to me normally due to my age but the prednisone seems to accelerate the problem.
What I plan to do is get my vision tested and get a pair of glasses but I haven’t had the opportunity to do this yet.

Cramps
Specifically leg cramps.   The potassium and water that I'm taking to help with the swelling also helps reduce my leg cramp problems.  I have had only very minor issues with leg cramps since I started taking prednisone for this flare.



Something I realized after initially writing this entry is that I'm taking prednisone to control my Crohn's flare, yet every time it actually gets those symptoms under control, I reduce my dosage and the symptoms recur.  I've spent almost all of the last 6 weeks feeling like I have a partial small bowel obstruction.  I've only had a few days of feeling almost normal in that entire time.

Returning to Running: Week 9 Day 2

Monday was a beautiful day.  Despite feeling completely exhausted from a day of travel, I elected to go for a run.  My goal was 2 miles - I completed 3 miles (of running + 1/2 mile of walking warm-up and 1/2 mile of walking cool-down).

Good stuff:
  • I did more than I hoped I could.
  • I felt good during the run.
  • Much of the sense of utter fatigue faded after running for a half mile or so.

Bad stuff:
  • I ran much slower than I used to before my Crohn's flare.
  • My heart rate was high (perhaps as much as 20 bpm higher than before my flare) for an equivalent work-out.
  • My heart rate got well into zone 5 by about 1.5 miles into my run.
  • My belly started hurting during the last mile of the run.
  • I had gut pain all through the night and into today.

Over the last 2 weeks or so, I've had 3 set-backs in regards to gut issues.  Coincidentally, all three of these set-backs occurred immediately after I did my last 3 runs.  I'm not convinced that the running is the issue, however, I can't disregard this either.

My plan is to do a simple walk for my next work out and see how I respond to that.  If I feel well from the walks, I will perhaps try another run sometime next week and see if I get the gut pain again.

Returning to Running: Week 9 Day 1

I didn't have time to do any running (or any sort of work out at all) over the weekend.  However, I was able to do my "unconventional work out" routing in which I spend time doing things that gets my heart rate up.

This weekend I was able to spend about 3 hours doing a variety of outside work.  This included both shoveling the horse shed and doing all sorts of yard maintenance.  Although I'm pretty sure I didn't get my heart rate very high into zone 4 (for me a heart rate of 155 or higher) I did keep it sustained in the zone 3 rate.

The yard work wore me out.  So from a muscle perspective it probably didn't do me much good, however, from an endurance perspective, I figure it did help me.

Friday, April 11, 2014

Diary of a Crohn's Flare: Some bad days

For the previous week or so, my eating and intestinal behaviors have been returning to normal.  I had started adding in V8 juice and applesauce as a means to get some dietary fiber.  I had some of one or both of these from Sunday - Wednesday.  However, on Wednesday evening after my run, I accidentally ate some apple pie.  It was very soft but it was not pureed like the other fiber foods that I've eaten recently.

My gut pain on Wednesday evening was powerful enough to wake me from sleep.  I also suffered from multiple severe night sweats (I wonder what the maids think of the thoroughly soaked sheets every night.  I hope they don't think I'm urinating in my bed).

My gut issues (bloating, full feeling, and pain) continued through today so far.  I am still able to eat but it is painful to do so.  Until this resolves, I'll be stuck at 40 mg of Prednisone and not able to consume even pureed fiber again :(.

Still my energy levels are back up and I did get a nice run in this week (my ankles are still sore :) ).  I plan to only walk until the bloating goes down because I worry that with my bloating I might traumatize my gut even further if I also run.

Returning to Running: Week 8 Day 4

By the end of the day on Wednesday I felt extremely fatigued.

However, it was a beautiful day and I had very few eating issues over the previous week, so I was determined to do some amount of exercise.  I decided that I'd go out to the trail and at least walk some - even if I didn't do any running.

So I walked my obligatory 1/2 mile warm up and still didn't want to run.  However, I didn't feel like I couldn't run, so I did my stretches and ran anyway.

By a 1/2 mile into my run, I was still feeling very fatigued and my heart rate was running about 20 bpm higher than normal for the difficulty of the run, so I slowed down a little but kept running.  I managed to get the full 2 miles in that I hoped to run.  My heart rate just got into zone 5 by the end of the run.

Hurrah!

I feel like I'm back on the road to running again after another month plus of recuperating from my belly issues.

Wednesday, April 9, 2014

Diary of a Croh’s Flare: Feels like Feasting


(This entry covers the week of Saturday 3/29 through about Friday 4/4)

Well, it feels like feasting compare to how I have felt recently.

Saturday 3/29 I got up, ate 2 waffles, drank an Ensure, and a cup of coffee.  Then I went shopping.  After 5 hours of errand running, I got home and spent the rest of the day seemingly eating everything in sight:

What I actually consumed over the rest of the day:
Brunch

  • 1 pancake
  • 2 pieces of bacon
  • 2 eggs


For the rest of the day I had:

  • 1 Ensure
  • A sleeve of Girl Scout cookies (thin mints)
  • a large bowel of mango sherbet
  • another scrambled egg
  • 2 hot dogs (mustard and ketchup only)


I’m not certain about the calorie count but that was the most I had eaten in a day for quite a long time.  I probably consumed more calories than I burned through the day – for the first time in weeks.  Later in the evening I suffered a terrible bout of gas.  I’m not sure what caused it but I suspect it was the hot dogs.

I also had good days on Sunday, Monday, and Tuesday on which I think I ate more calories than I consumed.  However, on Wednesday I had another bad day with lots of painful bloating and a complete inability to eat anything after breakfast.  What I realized on Wednesday evening was that the pants I wore on the good days were much looser fitting than the pants I wore on Wednesday (none of the pants were actually tight fitting).

Since the start of these eating problems, I’ve noticed that eating anything at all causes my abdomen to bloat.  My hypothesis is that the bloating causes the pants to constrict my gut and it is the constriction that leads to stoppage and pain.  Based upon the observation and hypothesis, I rewore my looser fitting pants on Thursday and Friday and both of these days were much better than Wednesday (though I still had some issues on Thursday).

It looks like I have a path forward with the digestion problems.  I’ll be wearing much looser pants now.  One irony is that although I’m the lightest I’ve been in 15 years, I’ll be wearing the largest pants I’ve ever worn (size 36 waist).  These pants are so loose, that I have to constantly pull them up so they don’t fall down.  However, so far this has worked very well for me.

Return to Running: Week 8 Day 3

Like the other days from this "week" of running (which is actually taking more like 2 weeks :) ), I'm posting this update a couple of days late.

After my walk on Saturday, I thought about what might be causing my dizziness and I decided that with my reduced calorie intake, I might be having problems maintaining my blood sugar levels.  Essentially, my body had no glycogen reserves for fueling the muscles and so was burning through my blood sugar too quickly.  So for my next planned work-out, I decided to drink a Gatorade to help keep up my energy levels.

On Monday I had a chance to try out my hypothesis and that did seem to work.  I walked briskly (between 3.7 & 4.0 mph) on a 1% incline for 3 miles.  It took me around 47 minutes.  I didn't feel light-headed at all - except after I stepped off the treadmill, which isn't unusual for me.

In fact, I felt very good after this walk and, if I can keep my calorie consumption up, I plan to try my first run on Wednesday evening.  I'll use Gatorade again during the run and I plan to keep it to 2 miles or less - using the opportunity to see what my "new normal" is in regards to running.  I also plan to bring an Ensure and drink that as an after run refueling.

On a side note, the massive dose of prednisone adds another dimension to the problems of running.  My legs are swollen & tired and I feel chronically fatigued.  My running over the last several years enables me to use will-power to override the sense of not having enough left to do the run but I am certain that I wouldn't be able to do this if I hadn't already built my running base.  I'll just have to see if I can add anything to the base while still taking the medication.

Tuesday, April 8, 2014

Return to Running: Week 8 Day 2




I’m writing this several days after the fact…

After my last “work out,” I had another bad day (I define a bad day as one in which I’m not able to eat much if anything and I’m usually in a lot of pain too) on Wednesday.  Since I set myself a goal of having at least 2 good days before every work out, this set back my plans for another walking work out.

I was able to get a day of walking in on Saturday I had a couple of blood tests and did other errands.  Going into the walk I felt much more energetic than my previous one.  This time I got 2 miles into the walk before feeling very light headed – so severe that I had to reach for my wife during the walk to keep from falling.  This vertigo sensation is new with my current flare.  I haven’t really experienced such severe vertigo with my previous Crohn’s flare & medications.  I don’t know what’s causing it.

Anyway, when I experience the light headedness, we returned to the car.  My total distance was around 3 miles for the day.  I had left an Ensure in the car so I drank one as an after run fuel.  After a short time I felt much better.  This was my first clue that the vertigo might be a blood sugar / fueling issue.

Return to Running: Week 8 Day 1

You may have noticed that this occurred several weeks after my last entry on running.


I’m writing this over a week after the fact…

With my Crohn’s acting up so severely that I haven’t been able to eat, I had to eliminate my work outs.  In fact, I eliminated even routing things I did to help me stay in shape, like taking the stairs.  I figured that if I wasn’t consuming enough calories to keep my weight up, then I couldn’t afford the luxury of burning them for staying fit.

Last weekend I had two good days in a row, meaning I think I ate more calories than I burned.  I decided that this was good enough to justify a “work out” and I decided to walk a forest trail.  At the 0.5 mile mark, I felt very good and REALLY wanted to start running, however, I restrained myself because it had been about 3 weeks since I had felt good enough to do anything.

Restraining myself turned out to be a good decision.  By the time I got to 0.75 miles, I started feeling very light-headed and I turned around.  It took a lot of will power to keep going by the end, I felt exhausted.

Still I was very happy that I was able to do anything!