Diary of a Crohn’s Flare: January 2014

1/3/14 – Friday

My colorectal surgeon (the doctor treating me for the abscess) approved me to return to normal activities but recommended that I not travel.

1/4/14 - Saturday

I spent 10 minutes on the elliptical and about 10 minutes doing mild calisthenics.  I felt fine during the work out.   The next day I felt terrible.  I had to take 3 Norcos through the day.  I also lost my appetite mostly because of pain and nausea in my abdomen.

1/10/14 - Friday

Scheduled for my next CT scan, the diagnostic facility couldn’t get approval from my new insurance in time to actually get the scan done.  Rescheduled for the next day.

1/11/14 - Saturday

I arrived at the diagnostic facility in the morning.  They had gotten approval from my new insurance for the scan.  The technician asked me why I was getting the scan, to which I replied “for an intestinal abscess near my appendix).  The technician wouldn’t tell me anything about the scan results other than “she was certain she had gotten a good image of what the doctor wanted to see.

1/13/14 - Monday

The doctor called and told me that the abscess had almost completely resolved and that they wanted me to stop taking the antibiotics.  I was also cleared to resume all normal activities including traveling for work and running.

All during this week, I continued to suffer from eating issues.  Eating any food caused a great deal of nausea and discomfort.  It sometimes required narcotic pain killers.  I kept myself on a mostly liquid diet including Ensure (for nutrition) and some low-residue type foods (cream of wheat, white bread, meats, eggs, etc.).

1/17/14 - Friday

I got to meet my new GI doctor.  We discussed many treatment options typical for Crohn’s patients

1. ASA (Acetaaalicylic Acid) maintenance meds
2. Steroids
3. Immuno modulators
4. Anti-Tumor necrosis factor (aTNF) like Humira & Remicade (he called them biologicals).
5. Surgery

I told him of my history which included experience with 1, 2, & 5.  When I first used steroids for my Crohn's (back in the '90s), it worked great.  As I continued using it, it became less effective and I suffered more side-effects.

I've never used #3 & #4.  He immediately started me on immuno-modulators (Imuran), scheduled a colonoscopy, and based upon the results of the colonoscopy he’ll make his suggestions regarding the biologicals or surgery.

I have an interesting side-note regarding my maintenance medications (the ASA family of drugs).  My Rx plan dropped sulfasalazine from its formula (it’s a cheap old drug that I can get as a generic) and recommended I replace it with a drug on the formulary called Pentasa.

I’ve had Pentasa before, it seemed as effective as sulfasalazine to me but it was a pain to take because I had to take 4 pills per dose and take 4 doses per day (16 pills per day).

I asked the doctor to write the script for me, which he did.  When I went to pick up the prescription, its price tag was $838 / month.  My thoughts were F*$! This noise!  I asked the pharmacist what the cost for generic sulfasalazine  was, the answer was ~$33 per every 3 months.  So I called my doctor back and asked him to change the script, which he very nicely did.  I recommend that you speak to your pharmacist and doctor about drugs, their cost, and possible alternatives if you get sticker shock from a drug.

The cost for my immune-modulator drug (generic Imuran) with my prescription plan is about $35 / month.

I researched the cost of the biological drugs (aTMF).  Remicade will run me about $835 per dose.  I think I get 1 dose every 2 months.  Humira will cost about $2200 / month (one dose every month).  Both are covered under my prescription plan.  This will be a very costly treatment option for me.  However, my current health insurance (which is exempted from Obamacare this year) has a max out-of-pocket cap of $7000.  Once I reach that, the plan covers 100% of my health care costs.  Next year my plan will be outlawed by Obamacare and I don’t know what I’m going to do then.

Week of 1/20/14

I started using my immuno-modulator medication this week.

I also traveled for work this week.  Eating caused nausea, great discomfort, and bloating.  I sometimes required pain medications.  I mostly kept myself on liquid and low-residue foods.  I ate a Whopper Jr. and the tomato, lettuce, and onion caused severe discomfort for about 24 hours.  I skipped lunch on Wednesday (because I still hurt from the running) and Thursday (because I was traveling and didn’t want to be in any more discomfort.

I exercised on Tuesday (2 mile run with 30 minutes of weight lifting and calisthenics).  I felt fine during the workout but felt MUCH worse on Wednesday (which was one of the days that I needed a pain medication).

Week of 1/27/14

I traveled again for work this week.  Eating continued to cause nausea, great discomfort, and bloating.  However, I did NOT require any pain medications.  I kept myself on liquid (including V8 and ensure) and low-residue foods.  I avoided all vegetables and the only fruits I ate were melon and bananas.

I felt pretty worn out from traveling on Monday so I skipped the work out.  Lunch left me feeling bad on Tuesday too.  On Wednesday I skipped lunch and exercised again (3 mile run with 45 minutes of weight lifting and calisthenics).  At one point I was doing pull-ups and felt a very clear “pop” in my gut near where the abscess occurred.  So I immediately stopped the work out.  I monitored my temperature for the next 24 hours and detected no fevers.

I ate ¼ of a sandwich for lunch on Thursday (just before my flight) and felt only a little worse from it.

I started researching disability leave and Social Security disability.  I’ve come to the sudden realization that my Crohn’s is causing a cascade of other issues (from the three fistula surgeries I had last year), to possibly my prostate issues, possibly my kidney issues, the abscess, and other issues.  I now realize that these issues could accumulate and possibly cause me to become disabled.  Don’t get me wrong, I’m not there yet.  I just realized that this disability could spring on me rather suddenly.

Also, I still plan to run another marathon before this happens.

My research into this shows me that with what I’ve already saved for retirement and some disability payments (e.g. from Social Security disability), I’ll be financially secure as long as my health care doesn’t cost significantly more than what I’m currently paying.