Diary of a Crohn’s Flare: Antibiotic Infusion

I established 6 pm as my infusion time and try to infuse the antibiotics between 6 pm and 7 pm every evening.  Because the Benadryl knocks me out, I'm going to slowly move this time back closer to my normal bed time (say 9:30 pm to 10:00 pm).

I am not a medical professional.
I’m providing the steps that I use for infusing antibiotics.  You should follow the directions provided by your health care professional!

Due to the (small) chance of (possibly severe/deadly) allergic reaction to antibiotics I insist that someone observe me while I give myself this infusion.

I have to use Benadryl before each infusion (more on that later).  Benadryl makes me sleepy, REALLY sleepy.  So I do not plan to do anything for a couple of hours after receiving IV Benadryl – I often sleep for 2 hours.  I also try to plan ahead and ensure I’ve done the following before starting the infusion process.

Before starting:

1. Eat
2. Drink
3. Use the restroom
4. Get comfortable

Items needed:

1. Sanitizing wash
2. Alcohol swabs (at least 3)
3. Saline Flush x3
4. Benadryl vial
5. Syringe x2 (one will be used for Benadryl, the other is for epinephrine in case of severe allergic reaction)
6. Epinephrine vial (in case of severe allergic reaction)
7. Antibiotic bulb (stored in refrigerator, but “warmed” for a minimum of 2 hours before use)
8. Heparin flush 

Items used for infusion:

Items needed in case of allergic reaction

In case of any allergic reaction, give Benadryl:

In case of severe allergic reaction, give epinephrine and call 911:

Steps:

1. Wash / Sanitize hands
2. Sterilize PICC line port with alcohol swabs
3. Clear air out of saline flush #1
4. Connect saline flush, open all clamps, and slowly flush out PICC line
5. Load syringe #1 with 0.5 ml (0.25 mg) IV Benadryl (diphenhydramine)
6. Connect Benadryl syringe and inject it over 1-2 minutes
7. Sterilize PICC line port with alcohol swab
8. Clear air out of saline flush #2
9. Connect saline flush #2 and slowly flush out PICC line
10. Connect IV antibiotics
11. Open antibiotics clamp (infusion takes 30-40 minutes)
12. Sterilize PICC line port with alcohol swab
13. Clear air out of saline flush #3
14. Connect saline flush #3 and slowly flush out PICC line
15. Connect Heparin flush and slowly flush out PICC line
16. Close clamps

Getting my IV antibiotic (the bulb does not need to be elevated, I was just playing with it :) )

IVanz IV antibiotic infusion

Saline flush of the PICC line after infusion

Tygacil IV antibiotic infusion.  Not feeling very well anymore.  The rubber chicken is my good luck talisman

Diary of a Crohn’s Flare: Getting a PICC line

What is a PICC line?

It is a peripherally inserted central catheter.  Which means (at least in my case), I went to the hospital for an out-patient procedure.  They admitted me and place me in a “day bed”.

They wheeled in an ultrasound machine and looked in my arm for some viable veins.  They stated before they started that they’d probably choose one of three named ones (they gave me the names but I don’t remember them).

 From UltraSoundpedia:

I had 4-5 obvious and large blood vessels.  At least one of these was the Brachial Vein, another was likely the Basilic Vein, and one was the Brachial Artery.  I'm not sure what the others were.

Runner’s side note: it turns out running causes a lot of good cardiovascular changes.  All three of these vessels were large, visible, and very viable (but they didn't intend to use the artery).  However, they said I had many viable “collateral” veins they could have used.  I forgot to ask which one they elected to use.

They likely used my Brachial vein

From OpenStax College.

A trio of medical professionals set up a sterile field, including putting a hair net and face mask on me and themselves.  They put on sterile gowns, hair nets, and face masks on themselves too.  They scrubbed my arm for a minimum of 30 seconds with an antiseptic.  I asked them what it was and got “something hexa something” but I don’t recall the name (It was probably Chlorhexidine).  It looked like iodine to me but other than feeling cool, it didn’t bother me at all J.

They shot my arm up with lidocaine to numb the skin and waited 30-60 seconds before shooting it up again with more lidocaine.  Within seconds after the second round of lidocaine, they cut an opening into my inner bicep and inserted the catheter into one of the major veins of my arm.  I felt a little pushing and pulling and a bit of wetness on my side (probably blood) but no pain or discomfort.

Then they covered the IV insertion point with a clear plastic / bandage with adhesive only on the edges of the patch.

Since then the site has been a bit uncomfortable most of the time.  During the first night, the site stung enough to interfere with my sleep.  I was told this was not normal and they check the PICC line insertion site.  The home health nurse didn’t see anything wrong with it.

A picture of the PICC line in my arm with a 100 ml (1 gram) bulb of Invanz IV antibiotic:

Close up of my PICC line:

Note that the bloody spot is where the line goes into my arm.  So far, it's remained a bit uncomfortable but easily tolerated.  When I move around more, the area bleeds.  All nurses encouraged me to continue using the arm, except:

1. Lift nothing heavier than a gallon of water
2. Don't engage in sudden movement (no volleyball for me).
3. and I added the restriction of not stretching to reach for things - this hurts a lot.

If you look carefully, you can see there is blood in the PICC line.  I'm told that I should flush this out when I notice it.  Honestly, I notice blood in the line almost every time that I look.  I could flush the line 5 times per day and still find blood in there, so I just flush it first thing in the morning and then again in the afternoon if I check and notice it.

Diary of a Crohn’s Flare: pre-Remicade CT Scan

While on vacation I was scheduled for my first Remicade infusion on Thursday 6/26.  However, before I got the infusion, I needed another CT scan to ensure that the abscess was healed.  So Tuesday morning, I went for the CT scan.

My doctor called me with the results on Wednesday evening.  The results: the abscess had gotten smaller but persisted.

1. Cancel Remicade
2. Figure out what to do next

My GI doctor consulted with my Colo-rectal surgeon.  They settled on two possible “best approaches” to resolving my abscess:

1. Surgery
2. IV antibiotics

Both doctors, my wife, and I all agreed we’d prefer to try the IV antibiotics first.  So the doctor prescribed a 2 week course of IV antibiotics at home and scheduled me to get a PICC (peripherally install central catheter) line installed on Friday 6/27 morning.

If the IV antibiotics don’t resolve the abscess, then I’ll go in for surgery :(

Diary of a Crohn’s Flare: Sepsis Redux

On Tuesday night of our vacation, I began to feel very crummy again.  I went to bed early and woke up at least 4 times due to abdominal pain.  Each time I woke up, I took ½ of one of my pain pills (for a total of 2 through the night for a total of 10 of these for the period of time of Tuesday night through Friday morning).  Despite the pain medication, I was only about to get 3 or so hours of sleep and I felt very cold all through the night.  By morning, I felt generally yucky, nauseated, had the classic elevated heart rate, and respiration.  I started taking my temperature and discovered that I had a fever too.

Through the morning my fever gradually rose to 101.8 F and (although it was not known to me at the time) my wife was calling my doctor and scrambling to find a hospital in the area to take me in.  Luckily by 11 am to noon, my fever broke and I started feeling not really better but not as bad.  Through the day I felt very worn out and wasn’t able to eat.

The general sense of malaise continue through Thursday but by Friday I felt good enough to go for a short visit to the beach.  I wasn’t able to eat very much on Friday either.

Saturday was our drive home and I continue feeling not very well.  My wife drove most of the way.  I occasionally had excruciating abdominal cramps with pain rising up to level 8 or so for very short periods of time.  I didn’t take pain medications though because I was worried I might need to drive.  During this time, only fruit & peppermint flavored candies didn’t make me feel even more nauseated, so that’s what I ate during the drive.

Once again, I have to strongly recommend that if you're having abdominal issues, try peppermint candies with peppermint oils in them.  They really help sooth the muscles in your abdominal tract and reduce nausea and cramping.

By Sunday, I felt good enough to eat ½ of a waffle (although it really lost its appeal by that point).  I was able to drive for almost 5 hours on Sunday and I was able to eat a hamburger by the end of the day though, that was a major victory!

Later we figured that in addition to the sepsis from the abscess, I may have been fighting the Norovirus (several of my kids experienced some symptoms that indicated a norovirus exposure too).  It took them several days to completely recover their appetites and resume normal bowel movements.