Diary of a Crohn’s Flare: The Vacation Begins

Back in January, my wife scheduled us for a family vacation.  That vacation started on Friday 6/12 and 6/23.  That means it started 2 days after my release from the hospital :O.

While in the hospital and every time I spoke with my doctor, I mentioned these plans to get his assessment of whether he thought it was OK for me to do and whether I should observe any special restrictions regarding my abscess, Crohn’s, or anything else.

The doctor cleared all vacation activities, even going to the beach and swimming in the ocean (despite having aspirated the abscess).  He felt that everything would be healed up by the time I got to Florida (where my vacation was).

On Friday we spent 16 hours preparing for, packing, and driving.  My wife drove most of the way but I did a total of about 4 hours of driving.  I ended up in moderate pain most of the day and took ½ pain pill to help with that about half way through the day which disqualified me from doing any driving after that.  I wasn’t able to eat much dinner because I experienced the full & bloated feeling that sometimes occurs with this flare.

We spent about 8 hours traveling on Saturday.  I drove about 2 hours and my wife drove the rest.  Once again, I had moderate pain through the day and ended up taking a ½ pain pill to make myself more comfortable.  By the time we got to the vacation house, we were all pretty tired.  Despite that, it wasn’t hard to convince the kids to unpack and prepare the place for our week’s stay.  Some of the kids spent time walking around that night but I took it easy.

The next day, I spent about 20 minutes riding a bike and an hour at the beach.  I spent most of the rest of the day lounging in the rental house just relaxing.

Diary of a Crohn’s Flare: Get thee to the Hospital!

My last post covered sepsis, there’s a reason why I inserted that topic between my statuses :) .

I hadn’t been feeling well the Sunday of 6/8 and my abdominal pain prevented me from falling asleep until around 3 am, even after taking a full Norco pain pill (7.5 mg hydrocodone).  I awoke several times through the night and each time was awake for an hour or more.  In total I slept only 2-3 hours through the whole night.  In the morning (on 6/9), I hurt even more, had a fever (over 100 F), had a rapid heart rate (estimated at 110 BPM to 120 BPM), and I felt really crummy.

My wife called the GI doctor and reported my condition.  They asked that we keep them apprised of my condition and get to the hospital immediately if my temperature spiked over 102 F.  My fever eventually got up to 101 and at this point my wife packed me into the car and took me to the hospital emergency room.  She notified the doctor that we were going.

At the hospital they took blood, urine, vitals, etc.  They concurred with my assessment on the heart rate and respiration (both in the elevated range).  My temperature had dropped to around 99.8 F.  My urine sample was extremely dark (darker than a dark beer) almost orange in color.  Later I learned that there was no blood or bacteria in the urine.  The blood test showed several numbers out of standard range, perhaps the most important of these was my white blood cells which indicated an active infection.  My doctor decided to admit me to the hospital and they immediately began IV antibiotics.

Later in the day I saw my doctor and we decided to try to get the abscess aspirated.  When I got to the room I discovered someone suspected I might have a C. Diff infection (I never found out who) and so I was quarantined for the duration of my hospital stay (but found out after discharge that they found no evidence of that infection in the various cultures they did).

I hate staying at the hospital; however, the one nice part of a hospital stay is that they can give me pain medication powerful enough to almost completely eliminate pain.  During this stay, the medication I was permitted to take was dilaudid (hydromorphone) which for me was more effective at controlling abdominal pain than morphine (but ironically worked less well at controlling headache pain as simple ibuprofen).  Anyway, when I’m in the hospital I’m no longer shy about asking for my pain mediation when I’m hurting and for several doses took it as frequently as I was permitted (about ½ the time).

The dilaudid gave me a strange sensation in my muscles.  It made them feel taxed and slightly sore for about 20-30 minutes after IV administration of the drug.  It also made me feel loopy and drowsy during that time and perhaps for up to 60 minutes after a dose.  After that time, I felt somewhat normal but either pain free or pain significantly reduced.  On a pain scale of 1-10, the dilaudid knocked the pain back 4-5 steps, so a 7 pain scale might be bumped down to under a 3.  On both Monday evening and Tuesday evening I felt really good with fever under control, my pain under control and able to eat.

Anyway, Tuesday morning they sent me down to interventional radiology.  They took a CT scan, found a “window” through the loops of my bowel large enough to insert a large needle.  They dosed me with some “waking” sedation (versed and fentanyl) and a local (lidocaine).  I remained conscious and was able to talk to the person performing the aspiration (who happened to be one of my daughter's former soccer coaches!).

He inserted about 3 3/4 inches of a 5 - 6 inch needle, attached a syringe, and aspirated all the fluid he could get from my abscess.  They pulled a bit more than 2 cc worth of what I can only describe as “pus”.  The entire process took maybe 30-40 minutes (but may have been less).

We kept waiting for the results of my stool culture, urine culture, and aspiration culture through the evening of Tuesday but didn’t get any lab results back (they had a hardware problem).  Because of the delay, the hospital held onto me through the night.

Wednesday was more of the same, except I chose to transition off the dilaudid and resume the use of Norco for my abdominal pain.  The oral Norco does seem to keep the pain controlled for a longer period of time even though it didn’t control the pain as thoroughly.  The hospital released me late Wednesday afternoon even though we hadn’t gotten any of the lab cultures back.  Also the blood tests from Wednesday showed my white blood cells had returned to normal.  I found out a couple of weeks later that my hemoglobin dropped from 15.5 or so down to 12.5 during my stay.  No one told me about this and I only found out by looking through my on line records.

By Thursday I got the results of the various cultures.  My urine was clean and had no blood or anything else questionable.  My stool culture was clean of the nasty bacteria types.  The fluid aspirated from the abscess found pretty typical gut infection bacteria (nothing like MRSA or C Diff) but they also found yeast (fungus) cells.  So they introduced an antifungal drug too (diflucan – flouraconazole?) into the mix of drugs I am taking.

One thing that I was very pleased with: I asked the nursing staff to try to time all activity to occur at the same time (blood tests, vitals, IV bag changes, etc.).  They were able to honor this both nights of my stay.  They did the last evening activity around midnight and that kept me going until I needed an IV antibiotic at 5 am.

Diary of a Crohn’s Flare: Sepsis

How do I know I have an abdominal abscess?  Well mostly I don’t.  The abscess causes me to have greater pressure sensitivity in my abdominal.  Pressing on my abdomen causes me to almost literally jump out of my skin, while more gentle pressures (like wearing clothing) causes me to build up a great deal of pain over time – enough pain that the norco pain meds can’t control it.  As I’ve mentioned previously, I’ve adopted wearing suspenders and leaving my pants unbuttoned as a method of dealing with the pressure sensitivity.

However, the factor that has gotten me to seek medical help is the spiking fever along with the other symptoms.  When my temperature goes over 100 F, I begin to take notice and pay very close attention to how I’m feeling and doing.  Over the last 6 months, I’ve had 7 CT scans and 6 of these were prompted by the spiking fever.  Since I rarely get a fever, getting so many of these in a short period of time is notable in itself.

I discovered that my body was likely reacting to small amounts of the infection in my abscess getting into the blood stream (a condition called bacteremia).  This caused a condition called sepsis and in most of my cases this progressed to the beginning stages of severe sepsis.  In all of these cases, I DID seek medical advice (I called or made appointment to see my doctor).  In one case, it did result in my hospitalization.

I discovered my latest abdominal abscess from a CT scan the doctor performed on 6/2.  It revealed a "small" abscess of about 2.25 inches diameter.  The radiologist's report indicated that it may have been part of a fistula between two loops of my small intestine.  I'm unlikely to get a more accurate description of what's happening in that area unless I get surgery.

I have no medical training.  The following conditions are LIFE THREATENING conditions.  If you suspect you may be suffering from any of them, then you should seek the advice of a health care professional immediately.

Bacteremia (any or all of these) – the presence of bacteria in the blood stream

• Sudden, high fever (I had this)
• Chills (I had this)
• Rapid heart rate (I had this)
• Nausea, vomiting or abdominal pain (I had this)
• A feeling or appearance of serious illness (I had this)

 

Sepsis (two of the below) – a condition in which the body’s response to infection causes a systemic inflammatory response

• Fever above 101.3 F (38.5 C) or below 95 F (35 C) (I had this)
• Heart rate higher than 90 beats a minute (I had this)
• Respiratory rate higher than 20 breaths a minute (I had this)
• Probable or confirmed infection (I had this)

Severe Sepsis (two of the above plus at least one of these) – severe sepsis may indicate an organ is failing

• Significantly decreased urine output (I had this)
• Abrupt change in mental status
• Decrease in platelet count
• Difficulty breathing
• Abnormal heart pumping function
• Abdominal pain (I had this)

Septic Shock (Severe Sepsis plus the below)

• Extremely low blood pressure

If you're concerned about an abscess or sepsis, then I recommend that you check out the Mayo Clinic's section on the Symptoms of Sepsis.

Diary of a Crohn’s Flare: Abscess Redux

When I last gave a status on how things were going, I had to complete the pre-Remicade testing (for TB, Hepatitis, fungal infections, etc.) and then see the doctor for the final confirmation that we were going to do the Remicade.

I completed all of this during the week of 6/1 - 6/6 and everything was “go for launch!” However, on Monday 6/8, I came down with a moderately high fever (100.6 or so), felt REALLY bad, experienced a rapid heartbeat (>110 bpm), and rapid respiration (I later learned these were signs of sepsis).  I called the doctor and he scheduled me for a CT scan to look for an abscess the very next day.

The CT scan revealed that I had another abscess – so I had to postpone the Remicade infusion until the abscess cleared up.  In the meantime, he put me on oral antibiotics again (ciprofloxacin 500 mg bid and Flagyl 500 mg tid).  The planned course of treatment was 2 weeks with a follow-up CT scan to confirm the abscess healed up.

This is an image of my first abscess (the second one was a bit larger but probably in the same location):

I wish my life were so easy.