Diary of a Crohn's Flare: Colonoscopy Prep

Since I was diagnosed with Crohn's Disease 24 years ago, I have more colonoscopies than I can remember.  My current guess is that I've had 10-15 colonoscopies (one without any sedation or anesthetic).  However, I've been a bad patient and haven't had a colonoscopy in the last 8 years.  So, I'm going through colonoscopy prep tonight.

The prep hasn't gone well.  I forgot to get the Dulcolax and the instructions didn't specify whether they wanted me to take the softener or the laxative (I'll have to mention that to my GI's staff).  Since I have Crohn's Disease, I felt I didn't need the laxative and so I took the softener instead.

My GI mentioned that since I have Crohn's and chronic diarrhea, I really didn't need to use the full-blown prep they give to normal people.  He prescribed (suggested, instructed?) me to take the "Miralax prep".  So far this has been MUCH better than any other prep I've tried.  Although I can taste the Miralax, it isn't the awful, bitter, gag reflex inducing taste of some of the other preps.

The bad news is that I have started everything late.  I was in an airplane when I was supposed to start with the softener.  I was driving home from the airport when I was supposed to start taking the Miralax prep.  I took the Dulculax when I got home at 6:30 pm (instead of 2 pm).  I started taking the prep mixture around 7:10 pm instead of 5 pm.

Because the colonoscopy begins at 10 am, I'm supposed to begin my second round of Miralax prep mixture at 8 pm.  However, I won't be done with my first round by then so I plan to take a break of 30 minutes or so prior to starting the second round.

I have to add that the prep instructions gives all measurements in grams.  Since I don't have a scale handy, this was a major irritation.  I had to do all the calculations quickly since I was so late in starting the prep.  However, I think I'm supposed to take about 8.5 fluid oz (a little more than 1 cup) of dry Miralax powder mixed with 64 oz of Gatorade or other clear fluid of my choice.  I split that into two batches.  Take the first batch in four doses over an hour.  Wait a while and then take the other batch, also in four doses over an hour.

I know I got the ratio of Miralax to Gatorade wrong.  I consumed the correct amount of Miralax but drank it with 80 oz of Gatorade.

Many hours later and I feel full and bloated.  Although things look flushed out, I don't feel flushed out.  I still feel like I have a lot of fluid left.  It's 11 pm now and I'm tired and want to go to sleep.  My bowels keep telling me they're not done but they also refuse to finish the flush.

*sigh*

Diary of a Crohn's Flare: Imuran, bleeding, night sweats, & colonoscopy prep

I've been back on azothioprine for two nights.  On each nights after taking the drug, my stool turned black.  I did a quick search on azothioprine side-effects and found that both intestinal bleeding and black stools are a known side-effect of azothioprine.

The drug sites which listed this information mentioned that I should contact my doctor if I observed that side-effect.  I am electing to not contact my doctor right away.  I'm going to wait a few more nights and see if this problem continues.  To help with the problem, I'm going to take the azothioprine with food in the evening.  However, that will be difficult tonight because I'm starting my colonoscopy prep.  I may also switch to taking it in the morning to see if that helps.

I also experienced a very mild night sweat last night.  This sort of occasional night sweat is typical for me so I won't contact my doctor about it either.

My colonoscopy prep told me to start the prep "at breakfast".  I'm interpreting that to mean I get to eat breakfast (which I did) even though I bet that they intended for me to not eat breakfast.  I did, however, stick with low residue food (bagel and eggs).  However, for the rest of the day I only get clear fluids.  Since I'm on a business trip that will mean chicken broth and apple juice.

I also won't be able to take the ducolax when the prep instructions say to, since I'll be on an airplane at the time and can't risk having to run to the toilet.  I should be able to start the prep about 3-4 hours later though when I get home.

Return to Running: Week 3, day 2

I seriously doubted I'd be able to run tonight.  Since my last run the tendons above my have hurt, especially when I climb stairs.  As recently as this afternoon it still hurt.  Earlier in the week I took ibuprofen as an anti-inflammatory, however, I had to stop taking them yesterday morning because I have a colonoscopy on Friday.

By the time I actually got back to my hotel room this evening, my knee was not hurting.  So, I got my running gear on and went for a run.  At the beginning of the week (before the pain), I planned to run at least four miles today and I got all four of those miles into the run tonight.  I also got a half mile warm-up walk and a half mile cool-down walk.  Then I lifted weights for about 30 minutes.

My knee does hurt a little tonight but it isn't doing too bad.

I won't have time to run tomorrow due to air travel and bowel prep.  I won't be able to run on Friday due to the colonoscopy and recovery.  So my next exercise attempt will be on Saturday.  I plan to run three miles if I feel good.  However, like the previous two weeks, if I run out of time, I may be forced to count other activities (like chopping wood) as part of my work out.

As soon as I can run with no knee pain, I'll begin to consider running on consecutive days again.

Diary of a Crohn's Flare: Bleeding again?

Yesterday during the day, my Crohn's site started aching.  This wasn't a cramping or sharp pain, it was more of a dull ache.

Through the course of the day yesterday, my stool gradually got darker.  By bed time it had turned completely black.  Through the night I had two bowel movements and then I had another when I awoke in the morning.  All three of those stools were also black.

For me this is an indication of bleeding.  Through the course of the day today, my stool returned to normal coloration.

I haven't bled regularly from Crohn's in a long time.  Plus my latest CBC (complete blood count) showed my red blood cell count, hemoglobbin, and hematocrit all in the normal range; so I'm not concerned about being anemic yet.

Still it's something I need to keep an eye on.  If I start seeing this happen regularly, I'll have to start getting regular blood tests to monitor my blood levels.

Returning to running: Week 3 day 1

I got a nice run in last night.

It was only three miles but aerobically I felt great.  My heart rate was running about 10 beats per minute slower for the same level of workout that I did last week.  I felt so good, that I plan to do extra distance.

However, in the last mile the area immediately above my right knee started to hurt.  By the end of the three miles, it hurt enough to make me limp.  I did not perform the extra distance I had planned earlier in my run.

Today, I have babied my knee a bit.  I'm taking the elevator instead of stairs, keeping my level of activity lower, and taking a couple of advil.

It has only improved a little since last night.  I'm sincerely hoping that it feels better by tomorrow evening.  If it doesn't then I'll take two extra recovery days and hope it feels better in time for a run late on Friday.

Returning to running: Week 2, Day 3

I did an unconventional work out again.

I missed my run on Day 2 and didn't have time to work out over the weekend.  Rather than completely abandoning my last two workouts, I walked with my wife for about 1 mile.

Then I got home and shoveled the horse shed and chopped wood for about 45 minutes.  This type of work is far more anaerobic than aerobic but it does leave me breathing hard.  Since I'm doing the work outside, it also helps me acclimate to the weather outside.

I did not wear my heart rate monitor but based upon my breathing and level of fatigue, I estimate that I did get my heart into zone 4 during this period.

Diary of a Crohn’s Flare: CBC & Kidney blood tests

A couple of weeks ago, I had started experiencing night sweats while taking Imuran.  My doctor had me stop taking this drug pending the results of a number of blood tests.  He tested my:

• CBC with differential
• Kidney function
• Ability to metabolize thioprine

I got the results of two of these tests back today.

The CBC showed all but one number in the normal range.  The out of bounds number (Lymphocytes) was too low.  I wonder if this is an effect of the Imuran (which I stopped taking about 2 weeks earlier).

My Kidney function test showed all tested numbers in range.  I mentioned in an earlier blog entry that my kidney function seemed mildly impaired.  The number that showed decreased function was the GFR.  I tested at 71 where a number above 90 was healthy.  I see the GFR on my comprehensive metabolic panel blood test (from back in December) and not my kidney function.  Because I don’t see comparable numbers, I can determine whether things have improved or not.

I don’t have my thioprine genetic test results yet.

My doctor ordered me to resume taking the Imuran, which I have.

Diary of a Crohn’s Flare: Someone’s ego is more important than my health

I have a weakness or strength (depending upon the precise situation) in regards to my Crohn’s Disease: I like to know every detail, see every lab result, understand the purpose of all tests, understand the nuances of my treatment, etc.

Recently the doctor sent me for genetic testing to determine whether I had enzymes for metabolizing thioprine.  This required a special package which included a cold pack for shipping my blood sample.  When I got to the lab to have the blood drawn, the person taking the blood asked me whether I had refrigerated the cold pack (I hadn’t).  I mentioned that no one informed me of any special handling required of the Prometheus pack (by Quest Diagnostics) so I hadn’t provided it with any special care.  The phlebotomist informed me that my handling was incorrect but that it’d probably be OK.

It turns out my doctor had ordered the wrong test, so I got to repeat this process.  I got the same Prometheus package but when I picked it up, I asked the doctor’s staff about the proper care and handling of the Prometheus pack.  They refused to tell me how to handle the package and said if the lab technician had questions, she should call the doctor’s staff.  I wheedled them a bit for some information but realized they were not going to provide me with the information I sought.

Anyway, the seen at the lab repeated in every detail my prior experience.  The lab tech told me the cold pack should have been refrigerated.  I told her she should call the doctor’s staff for more information if she had questions.  She refused to do that.

After getting the blood drawn, I researched the handling of the Prometheus packages and found that the type of handling of these packages changes based upon the type of test being administered.  My test did not require refrigeration, some of them do.  Some of them don’t require refrigeration but do better if the sample is refrigerated.

Why my doctor’s staff wouldn’t/couldn’t tell me this, I don’t know.  However, I am going to have a word with them.  They may be the medical professionals but ultimately my health depends upon me.  In order to make good choices, I have to know these things.  I have no tolerance for health care professionals who can’t be bothered to tell me what I need and want to know.

Returning to Running: Week 2 Day 2

I didn't run.

I had been suffering from cramping, gas, diarrhea, and a general sense of unwellness.  My coworkers invited me to go to a movie and I didn't feel well enough to even go to the movies, let alone do my running.

The positive part of this is that my knee feels better.

The negative is that I'm still cramping, bloated, uncomfortable, and suffering from persistent diarrhea.  I'll try to get some running in tomorrow (Friday) but I'm also getting a root canal so I'm not certain I'll be able to do it..

Life Inventory: Insurance information

Life Inventory: Insurance information

I have a large family and when we were just starting, I felt it was my responsibility to provide for the family whether I was alive or dead.  Furthermore as my other blog entries have described, I have a chronic incurable disease that directly or indirectly might shorten my life.

My employer provides good benefits and these include life insurance and accident insurance.  One year during open enrollment, I decided that I should actually figure out how much insurance I should buy to ensure my wife and children had enough money to live on.  The answer, it turned out, was as much as I could get.

However, during this process I had collected all sorts of information about the amount of benefits, types of benefits, who provided them, and also contact information.  So I wrote it all down in an electronic document and promptly forgot about them.  Over time, I realized that my wife might need this information in the event that I died!  So I printed it out and gave a copy to her.

Over time, I realized that she might be incapacitated at the same time as me if we were in an automobile accident, so I started distributing copies to the people I had entrusted with my estate.

So the first things I recommend doing is record your insurance information, including:

• Life Insurance
• Accident Insurance
• Travel Insurance (if you use American Express you automatically get some travel accident insurance, check it out).
• Auto Insurance
• House Insurance
• Medical Insurance
• Prescription Insurance
• Dental Insurance
• Eye Care Insurance

Ensure that you include:

• Who provides it
• What terms (e.g. life versus accident versus travel insurance)
• How much
• How to contact them (phone, web site, etc.)

I’ve provided a copy of this information to

• My wife
• My adult (and nearly adult) children living at home
• My parents
• My safe deposit box
• A fireproof safe in my house and told my children where that is

This should cover the basics in the event that you are killed or incapacitated in an accident for you and your family.

Returning to Running: Week 2, day 1

I've been rather haphazard with the naming of these entries.  I think I'll use a "week: day" title like I used for my Couch to 5K progress.

My last previous run was Wednesday 2/12, although I had spent 4 hours doing hard outside chores on Saturday.

My run last night was, hate to say it, hard.

I felt tired and out of breath for the entire run.  I never did get into the "zone".   I spent the entire run thinking about how much I didn't want to be running.  My legs were tired, my ankles got tired, I couldn't get into my "quiet, stealthy ninja" running mode, so my feet slapped or made noise the entire run.  I monitored my heart rate and it never gave me a reason to cut the run short (it stayed under 165 BPM).

I completed 3.25 miles (out of a planned 3.1 mile run) in slightly less than 32 minutes.  Then I lifted weights for about 40 minutes.

Interestingly, when I started my cool down, my heart rate dropped below 130 BPM in about three minutes which is very rapidly for me.

This morning my ankles and the tendons along the bottom of my feet hurt and were stiff.  They felt fine by lunch time.



I plan today as a recovery day and then plan to run four miles on Wednesday.

Life Inventory: The basics

Life inventory: everything your family needs in the event of your death or incapacitation.

Many books about financial planning discuss the basic estate documents.  These include

• Will
• Financial Power of Attorney
• Medical Power of Attorney
• Living will

When creating these documents, you need to both decide who you would like to perform these functions and then discuss your wishes with them.  Simply assigning these responsibilities to someone without talking to them means they might not know your wishes when they have to make important decisions.  In fact, I recommend asking the person that you wish to designate in that role before assigning them.  This is especially true if you are granting guardianship of your children in a will.

I also recommend discussing your wishes in regards to how you wish to be cared for in the event of your incapacitation for your medical power of attorney.  Since I trust the person that I’ve assigned this responsibility to, I’ve told them to do for me what they would wish done for themselves.

If you ask an attorney to create these documents for you, you will also be asked for an alternate person (in the event that the person you designated predeceases you).  I elected to designate someone outside of my household, in the event that both my wife and I were incapacitated in the (for example) the same accident.

When I first had my will created, my children were small, and so the most essential reason for my will was to designate guardianship of my children.  I asked my parents to be my children’s guardians and then if something happened to my parents, one of my siblings would have been the guardian.

Once you have created these documents, you should make copies.  Keep a copy for yourself and send a copy of each document to the people identified in those documents.  Let everyone know where those copies are  (I happen to keep one of my copies in my safe deposit box, but I have been warned that some states seal safe deposit boxes) and discuss their contents with the family members most likely to have to use them (spouse, adult children, parents, etc.).

The rest of my blog entries on this topic will cover other types of information that you might want to include in your life inventory.  While the documents discussed here are *legal* documents and can be enforced, the rest of the life inventory is informational and not legally binding.

Life Inventory: Introduction

Your "life inventory" should contain everything that your family needs to know in the event that you die or are incapacitated and you should store it in a format that they can use it and it can be kept safe.

Over the last 10 years several people have died that were close to me.  I wanted to share something I learned from those experiences with you

In 2003 my paternal grandmother was diagnosed with colon and pancreatic cancer.  Since my father was an only child, the care for my terminally ill grandmother fell to him.  In 2005 she died and the settlement of the estate also fell to him.  Luckily she had spoken extensively to my father about her wishes and plans.

In 2008 my maternal grandfather was diagnosed with a reoccurrence of his prostate cancer.  All of my maternal grandparents’ children still lived but they had designated my uncle as power of attorney (both financial and medical) as well as a trustee of their revocable living trust.  In 2010 my maternal grandfather died and shortly after that my grandmother’s dementia became severe enough that she was no longer able to care for herself.  Both of my maternal grandparents had spoken at length to all of their children about their wishes and assets.

In 2011 my wife’s paternal step-grandfather was diagnosed with a reoccurrence of his prostate cancer.  He had not designated a power of attorney, nor had he discussed his wishes regarding medical treatments and financial planning.  He also had not discussed with his children (or step-children) the existence or location of a while.  In 2013 he died.  For months there was confusion about whether a will existed and if it did where it was located and which version of the will was the most current one.  We spent months piecing together his finances and wishes by looking for clues in the mail, prior tax returns, and digging through all of his archived records.

In 2013 a family friend of mine’s brother died unexpectedly due to complications from surgery.  My friend’s brother had not discussed his finances, wishes, or recorded the information of his life for the rest of his family.  This meant his brother was left trying to determine how to administer the estate.

In the first two examples, family members spent a great deal of effort to provide detailed records of their lives to help their family members in the event of their death.

In the second two examples, the family members did not provide detailed records of their lives to help their family members in the event of their death.

I’ve spoken with other people who have dealt with this situation and he suggested the term “life inventory” to describe the type of records useful to your family members in the event of your death.

I have haphazardly kept such records for myself but with my recent experiences, I’ve been collecting and recording this information for my family far more systematically.  Over several blog entries, I hope to provide some guidance about the type of information that you should record for your family.  The life inventory is the collection of all information that your family might need in the event of your death or incapacitation.

You may find this topic unsettling or morbid; however, this is something that you can do to help them.  They will most likely be devastated by your death and unable to function.  By collecting this information now you can help them out immeasurably.   Plus, as in my situation, it is a means of ensuring that your family is aware of every benefit that you planned to provide for them.