Diary of a Crohn's Flare: Back to work - for real

Although I've been permitted to work from home for a few weeks, my employer encouraged me to begin going to the office.  As I've resumed interacting with the outside world (going to social functions, resuming work, etc.), I've begun dressing in my pre-surgery clothes.  This has caused problems.

Cramping
Specifically, I am cramping.  My cramps are severe (up to pain levels of 4-5), frequent (after most meals), and long-lasting (once they start, it takes hours to calm my gut down).  I have both Bentyl and Levsin to treat this cramping both are considered anticholinergic or antispasmodic medications and work to calm the muscles in your digestive tract.

In the past, Levsin has been sufficient.  I am taking the average recommended dose for the Levsin to treat my cramping but this time, it doesn't reduce my pain at all.  I used to prefer taking Levsin to Bentyl because it was effective but didn't make me drowsy.  Now that it doesn't seem effective, it is not worth the side-effects.

For me, Bentyl has always been more effective then Levsin.  However, Bentyl tends to make me feel a little drowsy and a bit drugged.  So when I needed cramping relief during the work day, I had to use Levsin.  I reserved Bentyl for especially bad bouts of cramping or cramping in the evening.  However, since my surgery and use of pain medication, the Bentyl has remained effective at treating my cramping but has not made me drowsy at all.  Even better, my current dosage is 10 mg 3x day.  This is less than 1/2 the recommended dosage for treating cramping.  I am currently getting this script from my GP, but I will consult with him and my GI doctor and probably ask that my GI doctor write future scripts.  The main reason is that my GPs script only provides enough medicine for 10 days if I take it as prescribed (30 pills / 3x day = 10 days!).

Energy
Other than the cramping, I am finding that the length of the work days tires me greatly.  I suppose this means that my body hasn't fully recovered yet.

Comfort
On a plus side, after months of having problems with my body not being able to maintain the correct temperature, I seem to have recovered the ability to remain comfortable in a much wider range of environmental temperatures.

Molds
A few days before reporting to the office, I received a notice that this office has high levels of mold.  Since I am recovering from fungal pneumonia, this concerned me a great deal.  Therefore, I consulted with my Infectious Diseases doctor and asked him about this.  He reassured me that my antifungal medication Diflucan provides me with protection against opportunistic infections by the mold spores.

I have no idea if or how heavily my immune system remains suppressed after spending most of the year taking Prednisone and Imuran (Azothioprine) both of which suppress your immune system.

Hospital Bed to 5K: W1D2

I ran this work out last night (10/29).  Unlike prior post-surgical workouts, I did this one alone and therefore played my running playlists.

WOW!

I found the experience very moving.  I nearly cried a couple of times (seriously!).  Other than my still painful lower legs, I felt really good and the cool weather and familiar songs really brought back all of the running I've done in previous years.

My last run segment was down a steep grade.  So far (fingers crossed), my thighs only feel marginally more sore than they would for a normal run.

As a reminder, I am using the Cool Running C25K training plan. This is appropriate for couch potatoes as well as people who haven't been training for a long-time (like me).  I recommend using a modified version of this even if you are a very fit runner.  When I've been away for a very short period of time, I just run the first day of each week's training plan.  I do this until I feel like the work out is "hard" and then I continue using the plan from that point.

For instance, I would use this plans W1D1 run as my W1D1.  Then I would use this plans W2D1 plan for my W1D2, etc.

The work outs are not that difficult for me yet, but I have a significant number of very sore muscles - so I'm sticking with the plan as is.

Summary
All W1 workouts are identical:

• 5 min brisk walking warm-up
• Stretch
• 8x [60 sec run + 90 sec walk] (20 minutes)
• 5 min brisk walking cool-down
• Stretch

2.3 miles in 30.5 min.  Estimated max heart rate during a hill climb was 180 bpm with an estimated average heart rate about 160 bpm. 

I had to estimate my heart rates due to issues with my heart rate monitor (which I am attempting to resolve!).  I estimate my heart rate based upon my perceived difficulty of running and being familiar with my heart rate at that level of effort.

Hospital Bed to 5K: C25K -> W1D1

Over the weekend, my wife signed me up for my first post-surgical 5K!  It will be a virtual run that I have to complete before the end of November.  Needless to say, this stimulus has lit a fire under my butt to speed up recovery.

On Monday 10/27, my wife suggested that we start the C25K training program.  C25K stands for Couch to 5K.  There are many programs available but the one I linked to is the one that I've used.  Cool Running also has training programs for all of the other distances that I've run, up to and including a Marathon (I ran the 2011 Monumental Marathon).  They also have the training programs divided into beginner, intermediate, and advanced.

 I found that these workouts have been causing the muscles in my lower leg to hurt a great deal.  I suspect these are all the small / stabilizer muscles that keeps you from falling over.  I plan to continue running on a paved surface until the running no longer causes pain in the muscles of my lower leg.  Then I'll transition to a soft surface to get those muscles some extra exercise.

After this work out my wife and I got massages.  This helped and hurt.  My sharp muscle pains (which included my IT band) were replaced by dull muscle pains.  IT band problems are common in runners, yet my IT band problems began before I started moving and moving seemed to help them get better.  The massage helped even more.

If you have recently had surgery and want to start or restart your training, you must first get permission from your surgeon.  I also highly recommend walking, riding a bike, or using an elliptical to see how well you tolerate the higher levels of activity before you start running.  Running is going to cause everything to jostle around and might be very uncomfortable.  If it is, let pain be your guide and stick with walking for another week before you try again.


Summary:
All W1 workouts are identical:

• 5 min brisk walking warm-up
• Stretch
• 8x [60 sec run + 90 sec walk] (20 minutes)
• 5 min brisk walking cool-down
• Stretch

2.0 miles in 30.5 min (I believe the marked 2.0 miles on this trail is actually 2.2 miles).

Unfortunately, my heart rate monitor battery is dead and my data recorder is broken.  I'm working to fix this but until I do, I will only be able to guess my heart rates.

Est max heart rate 155 bpm, estimated average heart rate 145 bpm.

Hospital Bed to 5K: Elliptical #4

Alas & Alec, life has kept me busy lately and my blog writing is a week or more behind my actual progress.  I'll play catch up by trying to keep these next couple of posts short.

I completed this work out on Friday 10/24.

Like my 3rd try at the elliptical, I elected to go for a longer period of time at a lower speed.  For all of these, I've been using my elliptical's #3 difficulty.  Back when I was running frequently, I felt that either a difficulty of #3 or #4 was comparable to how difficult it was to run.  By using this difficulty I've been preparing for my first run.

Summary:
2.2 miles in 30.5 minutes.  Max heart rate of 145 with an average heart rate of 140.  My heart rate was much lower on this "run" than my previous 3 elliptical work outs.

Diary of a Crohn's Flare: Pain and Pain Management

I've been wanting but dreading to write this particular entry for a number of months.  I didn't write this as an instruction manual, it's more a series of observations and decisions that I think have worked for me.  If you have wisdom to share or dispute some of mine, please share!



Pain is always subjective
For any given wound or procedure different people will experience different types and levels of pain.  Also drugs work differently for different people and, in my opinion, different drugs work better for some types of pain and not very well for other types of pain.  The only person who knows your types and levels of pain is you.  The only person who knows how well pain medications are working and how much you may need is also you.

If you are in a hospital setting with your heart rate monitored, then moderate to intense pain will cause your heart rate to be higher than normal.  Similarly, relief from that pain will allow your heart rate to return to a more normal rate.  So doctors can sometimes objectively see when you are experiencing pain.

HR increases with pain in men - not in women.

Absolute and relative pain are both important
On my pain scale, a '5' denotes enough pain to waken me from a sound sleep and a '4' denotes enough pain to keep from falling asleep.  When in the hospital immediately after surgery, I used the IV pain meds to keep me in the 3-5 level of pain.  Later towards the end of my hospital stay, I found that I used pain medication to keep my pain at a level or 3 or lower.  Since getting home, I've noticed that I started using pain medication to keep my pain levels at a 2 or lower.  I'm not certain why I have become less tolerant of pain or more willing to take medication to control pain over time.  My suspicion is that part of the decision has to do with the relative amount of pain.  Meaning if I'm used to have no or minimal pain, then pain at a level of 3 is a dramatic difference.  Lately, I've mostly had no pain, then pain at a level of 2 is a noticeable difference and I take medication for it.  Now that I can take ibuprofen (2+ weeks after surgery), that is sufficient to treat this level of pain.

Use the right medication for your pain
On another note, over the last 2 weeks I've developed aches and pains around my joints, in the tendons and ligaments.  The pain is bad enough to make me grimace and grunt when moving around and it also makes me walk with a very odd gait - having to sway my hips to ensure my legs move enough on each stride.  The hydrocodone / Tylenol combination pain medication doesn't affect this aching joint pain (it also seems to make headaches worse).  However, starting this week I was permitted to use begin using OTC ibuprofen.  The ibuprofen completely eliminates this aching joint pain.

Opiate medications lose effectiveness over time
I've been taking hydrocodone based pain medications at least intermittently since December of 2013.  From my surgery on 8/11 until very recently, I've taken them daily and in the days immediately after surgery, I had taken up to 8 norcos in a day.  Each of those used to make me feel drowsy and light headed.  Now when I take a 5 / 325 mg norco, I no longer feel even slightly drugged.  However, they do still provide pain relief and we should not assume they don't affect our ability to drive.

If your pain permits it, stop taking these medications as soon as you can, so that they are effective when you need them.

More on pain medication tolerance

Tell your doctor about your pain levels
After my wound debridement, my wound hurt way more than I expected and I went through my pain medications far faster than I expected.  I had to call my doctor's office and ask for more pain medication.

After my fistula/abscess incision and drainage, my wound hurt much less than I expected.  In fact, it hurt less than the wound debridement that I had 3 weeks earlier.  To this day, my most recently wound rarely hurts more than my belly wound.  When I communicate with my doctor's office, I make sure to tell them of this lack of pain.  I suspect the lack of pain is due to the tissue over the abscess having already died, but that is a total guess.  But it is important for your doctor to know.

Hospital Bed to 5K: Elliptical #3

• It's been 2 months and 10 days since my major surgery on 8/11
• It's been about 1 month since my surgical wound debridement on 9/17
• It's been 13 days since my fistula incision and drainage done on 10/8

These intermittent procedures (as well as pneumonia) have hampered the speed of my return to running but it looks like I'm finally getting some time to begin rebuilding my cardio base.

I hesitated from using the Couch to 5K notation for my return to running because my recovery actually started with simple acts like walking through a grocery store or walking around the ward in the hospital.  It's hard to rank these small achievements in the orderly C25K.


Anyway, enough philosophizing for the day.

I wanted to get my third elliptical work out in yesterday, however, I felt tired and worn out both physically and psychically.  So, I took it as a rest day - no cutting wood, no elliptical, no doing anything but sitting around, but I did run some necessary errands yesterday.

Today I hopped onto the elliptical with the intent of going slower but staying on for 30 minutes.  My work out lasted 30.5 minutes for 2.2 miles.  I did a warm down of 3 minutes and eked out another 0.2 miles.

In Summary:
2.4 miles in 33.5 min on my third go with the elliptical. The last 3 min were all warm down. Average heart rate about 140 bpm with a max around 152 bpm.

Hospital Bed to 5K: Elliptical #2

I did my second elliptical "run" this afternoon.

It was a hard work out but I did it right after I ate a large meal.  I was unable to go for the 30 minutes I hoped to do and instead only went for 20 minutes.

I like watching TV while doing my work outs.


In summary:
1.6 miles in 20 minutes (at a difficulty setting of 3 on my machine).  Average heart rate around 150 bpm with a peak around 165 bpm.

Hospital bed to 5K: Wood Cutting #3

I spent about one and a half hours cutting wood with a chainsaw today (about 2 tanks of gas).  I took a long break between the two sessions of wood cutting.

Unlike my wood cutting earlier in the week, the work did not make me feel like I was blacking out.  It was hard work and made me breath hard but it did not make me feel completely wiped out.

I attribute my improvement to working with the spirometer and doing things to exercise my cardiovascular and pulmonary systems.  Unfortunately, this heavy work does increase my coughing and it makes my chest hurt.

In summary:
90 minutes of cutting wood.  Average heart rate >130 bpm with a peak around 160 bpm.

Diary of a Crohn's Flare: Several Big Milestones

A Shower!
For the first time since the middle of June, I was able to shower without sealing a portion of my body away from water.  In June and July, I had to protect the PICC and midline dressings from water and since August I've had to protect my abdominal incision and wound from water.  My abdominal wound has finally scabbed and is emitting no exudate.  I still cover it with gauze but that is to keep my shirt fabric from rubbing against the (still sensitive wound).

Back to work!
I've mentioned this previously but I feel like it deserves to be mentioned again.  I've been on disability leave continuously since my July ER visit and hospitalization.  My bosses first instructions: update my work profile and contact two other resource managers about nearby projects.

I'll be starting my continuing education courses for work on Monday.

The two most promising projects looks like I'll be traveling (by car, thank goodness) to my next project.

Heavy duty chores
I went grocery shopping which took more than an hour and then helped unload and put away the groceries (either task would have wiped me out just a couple of weeks ago).

I also used the chainsaw so much I burned up 2 tanks of gas.  On my previous two times cutting wood, I wasn't able to even spend enough time to use up a single tank of gas.  Also after finishing my work, I (so far) haven't needed any pain medication!

Little pain!
I've also gone almost all day without any pain medication, not even a plain Tylenol.  I'm not certain how long I've taken pain medications daily but I know I occasionally had to take them, even back in March and April.

I have to admit that all of my major muscle groups are both sore and tired and I really wish that I could take an ibuprofen or two.  The pain mediation I can take might help with the pain a little but it won't help me recover from it.

Diary of a Crohn’s Flare: Post-Surgical Recovery

I’m still recovering from my abscess & fistula surgery (Incision and Drain plus Seton Placement) conducted on Wednesday 10/8.  My pain has been dramatically less than I’ve encountered from any previous surgery.  In fact, the lack of pain from that surgery has been so dramatic that I’ve had to take pain medication for my wound debridement far more frequently than for my far more recent abscess drainage.

The main pains that I suffer now are stinging from my abdominal debridement, stinging from my abscess drainage surgery, and a muscular pain adjacent to 8/11 surgical incision.

That muscular pain is aggravated by my coughing from the fungal pneumonia.  I wake up each morning and spend 20-30 minutes coughing intermittently.  It usually works up some phlegm and I hope this is my body clearing out some of the fungal infection.  I also cough rarely throughout the day so that sore muscle doesn’t get much rest

Also vigorous activity such as cutting up an oak tree with a chainsaw or spending 20 minutes on the elliptical often causes enough discomfort (usually at my abdominal incision but occasionally at my abscess incision) that I require an additional pain pill within an hour of completing that activity.

As far as pain medications go, I’m down to taking 1-2 5/325 Norco pain pills per day and I feel like once I’m permitted to resume taking NSAIDs, I will no longer require these.

I’ve been taking these opiate based medications for so long, that I do not notice taking these pills except that they do help take the edge of stinging and throbbing pain.  They no longer make me drowsy or seem to cause any other negative effect.

Hospital bed to 5K: Elliptical #1

Prior to my surgery my measured lung capacity was 5 liters (about 1.25 gallons).  After my surgery and then discovery of pneumonia my lung capacity had dropped to about 2 liters (about a 1/2 gallon).  I've been working with a spirometer to increase my lung capacity and over the last 3 weeks or so have built this up to 3.5 L.

Still, I find that I frequently feel out of breath after very light activity.

Because of that (and also because I do plan to run again), I started using our elliptical trainer at home.  Today I "walked" 1.5 miles in 20 minutes.  During this work-out my heart rate started off in the 130 beats per minute for the first 5-10 minutes and then rose into the 150s with a peak around 160 bpm.

I worked up a very good sweat, tired my legs out, got my heart beating hard, and got breathing very heavily.  I felt great getting started on running again.

In summary:
1.5 miles in 20 minutes.  Heart rate peaked at 160 bpm average around 145 bpm.

Hospital Bed to 5K: Wood Cutting #1 & #2

Sorry about the pause in my posting.  I wasn't suffering any particular set-backs not was I particularly busy.

For the most part I have been doing light work around the house, doing grocery shopping, and simply walking around.

The last significant exercise I've done was cutting wood with a chainsaw on Sunday and Monday.  I spent about 30-40 minutes each day doing that.  This work was so arduous for me that I sometimes got to the point of starting to black out (saw darkness at the edge of my vision).  The work forced me to take 2-3 breaks on each day of 5 or more minutes each.

This work is necessary for us to lay-in a supply of firewood for our wood stove this winter.  We use it as supplemental heat for our geothermal heating system.

However, this work also provided me an excellent opportunity to build muscle strength and endurance.  The work made me a bit sore and achy the next day.  Due to surgery on 10/8 I am forbidden to use NSAIDs, so I just have to deal with those aches and pains.

I estimate that my heart rate got well above 160 beats per minute prior to each of my rest breaks so my cardiovascular system got a lot of exercise on these two days.  It also shows me that I require a lot more to get my lungs and heart back into shape.

In summary:
On Sunday, I did 30 minutes of cardio and strength training.

On Monday, I did 40 minutes of cardio and strength training.

Diary of a Crohn's Surgery: Incision & Drainage and Seton placement results

Yesterday's surgery started very similarly to my prior 6 fistula surgeries.  They intended to do an incision & drainage of my fistula/abscess and then place a seton in the fistula track to keep it open an allow all infection to drain.

The sedation drug cocktail for this surgery was:

• Demerol
• Fentanyl
• Reglan
• IV NSAID whose name I can't recall
• Zofran they usually also include zofran to help reduce the possibility of vomiting during sedation but a potential drug interaction prevented them from using it on me

The steps for this out-patient surgery were

1. Get weighed (necessary for determine sedation drug amounts)
2. Go to the bathroom (they use a nerve block that prevents you from determining whether your bladder is full so they want your bladder empty)
3. Remove clothes
4. Put on hospital gown and get in the gurney
5. Nurse takes my medical history and checks on drug allergies
6. Anesthesiologist / nurse practitioner anesthetist discusses sedation drugs and checks to ensure they don't case problems
7. Surgeon comes and and briefly discusses surgery (in my case this time, he just smiled and waved - we've done this dance enough we didn't need to discuss anything).
8. Put in IV
9. Anesthesiologist / nurse practitioner anesthetist starts sedation drugs (he started with the IV NSAID)
10. Wheeled me into the operating room
11. Started me on the IV demerol
12. Had me hop from the gurney onto the operating table
13. Started me on the Reglan
14. Started me on the Fentanyl
15. Gave me oxygen and a gas to make me sleepy (the gas smelled strongly of chemicals but I didn't have to smell it for very long)
16. Then I semi-woke up in recovery
17. A nurse asked me how I felt, to which I replied "I'm still very sleepy", and they left me alone
18. A little later I told them I was ready to get up
19. She gave me my clothes, I got dressed, and she walked me out to the car

My post-operative pain and even my pain the next day was minimal and less than I've experience from any previous fistula surgery.

I found out after the surgery that my fistula and abscess contained so much infection and was so inflamed that they were unable to thread the seton through the fistula track.  So they just drained the fistula, packed it, and applied a dressing to the wound.  They left me with instructions for me to unpack the wound at 7 pm (I had the surgery at 2 pm).

The doctor told my wife that he currently plans to place the seton after I complete treatment for the fungal pneumonia (which should be about 5 months from now).  I fear that the fistula will get worse quickly enough that it will require another surgery before that time.

Another issue is that I am forming another fistula, which is much smaller and not abscessed, on the other side of my anus.

Diary of a Crohn's Flare: Fungal Pneumonia

I've spoken about my fungal pneumonia in prior posts but I thought I'd consolidate that information and provide more reference information with it.

MY DIAGNOSIS
Early September 7th I went to the ER with a small bowel obstruction.  After admission to the ER and getting treated with pain and nausea meds the ER doc ordered a series of tests to verify my suspicion of a bowel obstruction.  This included urine and blood tests but also an abdominal CT scan.  This is what the radiologist said about CT scan:

IMPRESSION:
1. Findings suggest partial small bowel obstruction.
2. There is induration/inflammation around the ileocolonic anastomosis in the right abdomen but there is no discrete abscess in this area.
3. Small fluid collection in the anterior abdomen deep to the midline wound. This contains no gas bubbles. It could be sterile or infected.
4. Potentially significant abnormality in both lung bases where there are new nodular infiltrates. These are only partially included on the study. A CT scan of the chest with intravenous contrast is suggested for further evaluation.

Based upon this CT scan (and a blood test which indicated I was fighting infection), the ER doc admitted me to the hospital.  They also ordered a chest CT scan.  The radiologist said this about the chest CT scan:

IMPRESSION:
1. Multifocal pulmonary consolidation, consistent with pneumonia.
2. A subcentimeter cavitary nodule is present in the right middle lobe.
3. If the patient is immunosuppressed, one should consider opportunistic infection.

I later learned that I had 20 or more "spots" in my lungs.  Later I read that the "cavitary nodule" usually indicates necrotic (aka dead) tissue.

Based upon my taking both Imuran (immuno-suppressant) and Prednisone (also considered immuno-suppressant), the doctors did consider me to be immuno-compromised.  So they began a battery of tests which eventually included more than 30 tests, most of them blood tests.

After one of the antibody tests indicated exposure to Cryptococcus Neoformans, they began treating me for that and they elected to perform a broncoscopy.  They also tested the material the collected from my lungs in the broncoscopy (a washing, a brushing, and a biopsy).  The washing and brushing were both clear of organisms but the culture of the biopsy also showed C. Neoformans and restesting my blood for C. Neoformans verified the diagnosis.

Cryptococcus neoformans is the fungus that causes this disease. It is usually found in soil. If you breathe it in, it infects your lungs. The infection may go away on its own, remain in the lungs only, or spread throughout the body (disseminate).

This infection is most often seen in people with a weakened immune system, such as those with HIV infection, taking high doses of corticosteroid medications, cancer chemotherapy, or who have Hodgkin's disease.

It can be found all over the world.





Because I displayed no symptoms of the central nervous system (to indicate encephalitis or meningitis), they elected to not perform a lumbar puncture for testing by cerebral-spinal fluid (CSF).  To this date (10/7), I still do not display central nervous system (CNS) symptoms, cross your fingers that this remains true because if this gets into my CNS the prognosis is terrible.  Most people die and of those that survive, nearly all of them suffer some amount of brain damage.


Note, the results of some of my cultures are still not back yet (mostly the mycobacterium cultures).  So it is possible that I am suffering from another infection - I'm sincerely hoping that I'm not.  I've got plenty to worry about already.

This process was complicated by the fact that I was asymptomatic for the fungal infection.  I'm not sure whether this was because I still had prednisone and Imuran in my system and my immune system was ignoring the infection or because we caught it too early for it to cause major symptoms.

I fear that the former is true.  I fear this because of the 20+ spots they found on the CT scan.

TREATMENT
Treatment of Cryptococcus by Medscape says to treat mild to moderate C. Neoformans infections with 400 mg / day Diflucan or Itraconazole for 6 to 12 months.

People with a high chance of reinfection/relapse can be treated with 200 mg/day of Diflucan, perhaps for the rest of their life.  If I still require IV Remicade after we resolve the original infection, then I will probably use this treatment regimen.

PROGNOSIS
Now that this condition has been diagnosed and treatment has begun, my prognosis is excellent.  Even if I have to stop taking my current anti-fungal drug, there are enough alternatives that I'll be able to kill this infection.  Also I've stopped taking any drugs which can compromise my immune system and it should be able to help much more than it was previously.

I am really hoping that this does not prevent me from taking the Remicade and as I near the end of my C. Neoformans treatment, I'm hoping that I can get my Infectious Diseases doc and GI doc to agree to a treatment plan which both includes Remicade or equivalent and prevents a re-occurrence of the fungal pneumonia.

Hospital Bed to 5K: Another walk

On Saturday I took my rest day and really relished it.  I was still feeling achy in my legs from the 1.5 miles I completed on Friday.

Yesterday we walked at a local festival.  We did not have the "Map my run" app running so I don't have an official distance measurement for our total walking distance, however, given the way I felt, I assume it was also around 1.5 miles.

I feel achy and have a fever today.  I suspect my aches are either due to the cold I'm fighting or the fungal pneumonia this time.

Today is a rest day but tomorrow I plan to try walking (or using the elliptical) for 2 miles.  I'll have my surgery on Wednesday so that's all I'll be able to do for a week or more.

Diary of a Crohn's Flare: Feeling Hot and Cold again

Today was supposed to be my first day back at work since my disability began back in the middle of July.  Unfortunately, my company's HR office didn't get the forms completed in just the right way and so they are not permitting me to return to work today.  Instead I have recontacted my surgeon's office and asked them to complete the return to work authorization form again and resend it to my HR department.

I understand that my company's HR department needs assurances that I am ready for the rigors of work and that they need to protect themselves from potential lawsuits but this is getting tedious and annoying.

On another front, it is perhaps a good thing that today I was not able to work.  I am running a low-grade fever on and off and I am also suffering from hot and cold flashes.  I'll go from feeling freezing cold and needing to wear a jacket and cover myself with a blanket to feeling extremely overheated and having to shed my clothing down to shorts.  My fevers haven't been that high (99.2 F) and about half of my temperature readings have been normal (98.6 F).

I also had a hacking but productive cough this morning.  I like to pretend that this is my body's way of expelling some of the fungal pneumonia infection but I have no idea whether this is realistic or not.  In this particular case, I am also fighting off a cold that other members of my family also have so my coughing could be completely related to that.

Diary of a Crohn's Flare: Post Surgical Anemia

The charts below show how my blood responded after my surgery on 8/11.  Of course during surgery I lost blood.  It looks like my hemoglobin dropped close to 9 g/dL (grams per deciliter).  Since the normal range for men on this test is 14-17, I was anemic.

Between my release from the hospital on Monday 8/18 and my hospital admission on Sunday 9/7 my hemoglobin, hematicrit, and other numbers for oxygenation all returned to the low end of normal.  However, during my hospital stay in September, my hemoglobin and other numbers dropped again.

 

I've gotten these definitions from WebMD.

Hematocrit
Hematocrit is a measure the volume taken by the red blood cells.  The Hematocrit is a measure which combines the information from the RBC and MCV measures.  Low Hematocrit indicates anemia.

Hemoglobin
Hemoglobin is the protein that carries oxygen in the blood.  Low hemoglobin indicates anemia.

RBC
Red blood cell count measures the number of red blood cells in the sample blood.  Low RBC indicates anemia.

RDW
The Red blood cell distribution width gives a measure of the disparity in red blood cell sizes.  If you have lots of large and small red blood cells, this number would be large.  If your red blood cells are all around the same size, then the number will be small.  High RDW, may indicate you have been bleeding

MCH
Mean corpuscular hemaglobin indicates the hemaglobin in the average red blood cell.  In my charts above this value is dropping - which makes sense to me if I hadn't been taking iron (my body would be creating red blood cells but I wouldn't have enough iron to create the hemaglobin for them).

MCHC
Mean corpuscular hemaglobin concentration indicates the concentration of hemoglobin in the average red blood cell.

MCV
Mean corpuscular volume indicates the size of the red blood cells.  Smaller size indicates younger cells which may mean the patient is having to replace lost blood.



Because of this persistent anemia, I've begun treating myself (with my doctor's permission) by taking iron supplements.  I understand why my hematocrit and hemoglobin are responding in the manner shown in the charts but I do not understand why my MCH and MCHC continue to decline despite taking iron supplements.




Anemia may be subdivided into the following levels
Mild anemia: hemoglobin 10 to 11 g/dL
Moderate anemia: hemoglobin 8 to 10 g/dL
Severe anemia: hemoglobin 6.5 to 8 g/dL
Life-threatening anemia: hemoglobin less than 6.5

From doing research on the topic and also experimenting upon myself when I've been anemic in the past, I've found that taking these vitamin supplements aids in both the absorption of iron and reduces the adverse side-effects of the iron supplements (cramping, constipation, and other related issues):

Vitamin C
Vitamin B12
Folic Acid

I've been advised to not take more than 800 mcg of Folic Acid in a week.

Diary of a Crohn's Flare: Debridement Follow-up

In my last post I mentioned that the surgeon closed my wound with 3 sutures.  Today (10/3), I had my surgical follow-up and had those sutures removed.

Unfortunately for me, I had forgotten about those sutures :)

The suture removal was more painful than I had anticipated.  This was because the surgeon grabbed the sutures with forceps and pulled them about 1 inch out of my skin before cutting them.  It stung quite a bit.

Luckily I had taken 2 of my pain pills (Norco) prior to the appointment thinking that he might perform an office wound debridement.

During the appointment he told me that he lifted all of my surgical restrictions.

1. I am allowed a full diet again
2. I may drive again
3. I can run and exercise (as long as I let pain be my guide and stop when things start to hurt)
4. I am allowed to resume work starting on Monday
5. I no longer have restrictions on the amount of weight I can lift (using pain as my guide again)

Let me reiterate though that when I increase my activity, I often (but not always) require increased pain medication.


Along with the check-up of my surgical wound, he also checked my other problem: an anorectal fistula.  This fistula is the same fistula that he treated over the summer of 2013.  Since his last surgery, this fistula *almost* completely healed but never did quite finish healing.  With all of the other issues affecting me this year, this fistula elected to act up and cause problems.  As part of the fistula issues problems, I developed an abscess along the fistula track.

Over the last couple of weeks I began to develop a second fistula on the other side of my anus.  Right now, it is a very minor issue.  During this visit, I mentioned the new fistula to the surgeon, he saw it, noted its presence, but stated that for now we will leave it untreated.  He wants me to heal from the other issues before we address this second fistula.


The results of his examination was that I will get an "incision and drainage" and "seton placement" surgeries next Wednesday (10/8).  Because of the pain associated with this surgery (and my inability to sit after it), I'll require another week on disability and pain medication :(

Diary of a Crohn's Flare: Surgical Wound Debridement

From Wikipedia explains that Wound Debridement:

"... is the medical removal of dead, damaged, or infected tissue to improve the healing potential of the remaining healthy tissue."

As I mentioned in my earlier post about wound debridement, there are many different methods of debriding a wound.  From the same Wikipedia entry:

Removal may be surgical, mechanical, chemical, autolytic (self-digestion), and by maggot therapy, where certain species of live maggots selectively eat only necrotic tissue.

After looking at my wound earlier and also by monitoring the rate of wound closure (it was actually getting larger), my surgeon elected to perform surgical wound debridement and closed my wound with 3 sutures.  He performed this (minor out-patient) surgery on 9/17.  He cut out any questionable tissue (we don't think there was any infected tissue) and ensured that all that remained was the pink healthy tissue.

After waking up from the waking sedation (versed, fentanyl, and propofol administered by an anesthesiologist), I discovered that the debridement and wound closing caused my wound to sting REALLY badly.  On the first day after surgery I used almost the full amount pain medication written on my pain medication script.  However, the pain receded much faster from this than it did after my surgery on 8/11.  The difference in recovery times is easily explained by the difference in the involvement of the surgery.

Still I asked for and received a refill on my pain medication about 11 days after surgery.  Since then I've been working hard on reducing the amount of pain medication (Norco) that I required each day.


After this surgery (and the closing of my wound) my surgeon cancelled home health care.

Side note:
My surgeon ordered Home health care in order to monitor the progress of my wound.  However, my insurance only covered home health care as long as I was "home bound".  This meant I could not return to work, run, or really spend any time out of the house as long as I had an open wound in my belly.

This wasn't a problem because I felt truly terrible most of that time.  However, by closing my wound and ending home health care, he enabled me to return to work.

Hospital Bed to 5K: Celebration Day

Since my last post on this topic, written back in August, my doctors have permitted me to exercise all that I want.  However, the symptoms of fungal pneumonia (fever, aches, & pains) have prevented me from doing much in the way of exercise.

I have been doing things daily to keep active (going to grocery stores, household chores, walking around the yard, etc.), however, this activity hasn't done much to prepare me for returning to running.

I'm still at least 3 posts behind in my Diary of a Crohn's Flare and I don't want to spoil the developments, but today my surgeon lifted all remaining restrictions.  To celebrate my wife and sister-in-law took me out to a state park and we walked a (hilly) mile very briskly.  I am feeling this in my legs and in my wound this evening.  My legs are tired and a bit achy.  I won't know if I did too much until tomorrow.

My immediate plans for getting back into running trim involve first increasing my walking distances up to 3 miles.  Later I'll transition to the run-walk routine provided in the couch to 5K program.  The main difference is that when recovering from surgery, you must also listen to your wound.  If the wound begins hurting (for me it is usually a stinging sensation), then you should cease the exercise.

The other aspect to this is that when you exercise, you will need more pain medication.  Speak to your doctor about this and seek his opinion on how to trade-off between activity and pain management.  For me staying inactive significantly reduces my requirements for pain medication but it also increases the risks of blood clots and other problems.

In summary,

I walked 1 mile in 19 minutes today.
Later in the same day I walked another unmeasured distance (but I guess it at around 0.5 miles) in 9 minutes.

Diary of a Crohn's Flare: Nausea

Throughout most of my life, even after being diagnosed with Crohn's, I have almost never suffered from nausea.  Even when suffering from bowel obstructions and feeling bloated, full, and completely uninterested in food; I still didn't feel nauseated.

This summer with the abdominal abscess, IV antibiotics, constant pain, pain medications, etc.; that all changed.  I've suffered from nausea regularly often multiple times per day.  In most cases, the nausea hasn't been strong enough to make me feel like was imminently about to vomit, but it was strong enough to make me feel miserable and completely disinterest me in food.  I'm told that opiate based pain medicine can cause nausea and constipation.  I've never suffered from constipation from these medications and I don't recall suffering from nausea before this summer.  It's possible the pain medication is contributing to my nausea issues.

Because of these very frequent bouts of nausea I requested and received scripts for anti-nausea medications (both Zofran and Phenergan).  For me, I think the Zofran is slightly less effective but it does not make me drowsy.  However, the Phenergan seems more powerful but it also makes me very drowsy (not as bad as Benadryl but worse than opiate pain meds!).

When I discovered the potential drug interaction between the Diflucan and my anti-nausea medications, I became very worried.  I worried about how I was going to be able to eat with frequent nausea.

After stopping the Zofran and Phenergan I did start the Meclizine.  This helped, some.  I also resumed using peppermint candies.  Eating these provide me with a window of 10-20 minutes nausea free.  So I started eating these peppermint candies before every meal to reduce the nausea.

I also found that my nausea isn't affected by some foods, such as fruit, sherbet, and flavored ices.  So lately I've been eating more sherbet, applesauce, and bananas.  I've also switched up my diet to eat whatever seems appealing at any particular time.  Ironically, one thing that has seemed appealing to me lately is beer-battered fish fillets.  Other than those, I mostly avoid high fat foods.

Today I had a tuna salad sandwich.  After the fact, my GI tract informed me that this was the wrong choice and I've had nausea ever since.  Eating several peppermint candies has provided me with temporary relief but hasn't resolved this bout of nausea.  I might have to limit my diet to sherbet and applesauce tonight.

Although I have not had trouble maintaining a healthy weight over the course of my disease up until this point; this summer's problems (multiple surgeries, bowel obstructions, abscesses, pneumonia, etc.); I have had trouble maintaining my weight this year.  I've lost about 14 pounds from my pre-flare weight.  Although my current weight isn't worrisome, it does not leave me with much cushion should I suffer from additional problems.  So I am working hard to maintain and even gain some weight.

If you have problems with nausea and maintaining your weight, you definitely need to speak to your physician(s).  In my case, the Diflucan takes precedence over the anti-nausea medications so I just have to "suck it up" and make do without them.

Diary of a Crohn's Flare: The Fever

During my August hospitalization I had been placed back on Prednisone.  My doctors had me taper down from 40 mg and by the time I got to 10 mg / day, my Crohn's doctor asked me to maintain my Prednisone dosage at 10 mg / day until I could start my biological treatments (Remicade) scheduled to begin 9/15.  I was not taking Imuran during this period and in fact the Surgeon forbade me from resuming it until 9/15.

During my hospitalization that started on 9/8, my immune system was still suppressed from these medications.  When they discovered the Cryptococcus lung infection, the doctors forbade me from taking any immuno-suppressant drugs (steroid, sulfasalazine, Imuran, or Remicade) until I cleared the lung infection and they started me on the antifungal medicine Diflucan (fluconazole).

The doctors theorized that the reason I was showing no signs of lung infection was that the other drugs suppressed my immune response enough that it wasn't reacting the infection at all.

Fortunately (or unfortunately), once I returned home from the hospital on 9/11, my body began to recognized that I had pneumonia and along with the Diflucan began to vigorously fight it.  What this meant for me was - feeling terrible.  I maintained a fever 24 hours a day for about 13 days.  My temperature ranged from 99.2F up to 102.2 F.  I suffered from feeling achy and tired and just felt miserable for most of this time.  I also suffered severe night sweats up to 3 times per night which required toweling off each time.

When I talked with the infectious diseases doctor he said I should expect the fevers to continue from 2-4 weeks after starting treatment.  Last week I started having days in which I had a normal temperature for about half the day and a mild fever for the other half of the day.  Over last weekend I began having days in which I had no fever at all.  This week I mostly haven't taken my temperature but on the days I have taken my temperature I've found that I suffer from a low grade fever for a few hours each day but am mostly maintaining a normal temperature.  Even better, most of the aching has stopped and I'm not nearly as tired as I had been.

Although I find this terribly frustrating, I've taken some consolation in the fact that I am recovering from pneumonia, that pneumonia is a serious ailment, and that it is life threatening.  The fact that I am able to function at 75% or so is actually a very good sign.

On a side note, a friend of my family is a clinical and laboratory pharmacologist.  He reviewed my medications and pointed out that several of my medications could have potentially serious / life-threatening drug interactions.  I thought I would mention those for other people who might be in my situation.

Diflucan (fluconazole) has a potential drug interaction with Zofran & Phenergan (anti-nausea medications) and Prilosec (the proton pump inhibitor [PPI] that I take for GERD).  He recommended that for anti-nausea medication that I switch to Meclizine (an OTC motion sickness medication).  For the GERD he recommended several options but the one I selected was OTC Prevacid (lensoprazole).  The drug interaction was that using Diflucan with these drugs could result in heart timing issues / arrhythmia (I don't know the technical jargon) but here's what I've found on Drugs.com about it:





Drug interaction between Diflucan and Zofran:
Using fluconazole together with ondansetron can increase the risk of an irregular heart rhythm that may be serious.

The other drugs had similar warnings.

My family friend also recommended that I being a 81 mg aspirin regime to reduce the chances of blood clots (I have a history of them and my latest CBC showed elevated platlet counts).

Instead of simply making these changes on my own, I consulted with my GP, GI, and ID (Infectious Diseases) doctors about wanting to make them.  All doctors agreed to the changes.