Diary of a Crohn’s Flare: February 2014

Week of 2/3/14

I got to work from home this week.  Finally, eating has stopped causing me so many issues.  I’ve been able to move around and eat most of the time without triggering discomfort.  I haven’t had to take pain medications in a couple of weeks now.

On a side note, one of my molars is dying and I need a root-canal.  Unfortunate timing of a major snow storm kept me from my oral surgeon and now I have to wait until Friday of the next week to get my root-canal.

I started having extremely bad night-sweats this week.  Three days in a row of clothing and bedding completely soaked (to the point I could wring sweat out of them).  After day two, I started using my own advice; I sleep on a towel with extra clothing by the side of the bed.  Although I only had 3 really bad night sweats during the week, I had some night sweating every day of the week.

My experience with Crohn’s suggests my inflammatory processes are still highly active.  Although my gut issues seems to be declining, eating still causes bloating even when it doesn’t cause pain.  I’ve had a lot more gas and more frequent bowel movements than normal (up from 4 / day to perhaps 8 / day).  I think at least part of this is due to the antibiotics for my tooth.

I need to call my GI doctor and report the night-sweats but haven’t had the time yet.  I suppose the night sweats could be due to a recurrence of the intestinal abscess.

In general, my eating is returning to normal and I’m regaining some of the 15 pounds I’ve lost since the beginning of December.

I started researching the Americans with Disabilities Act.  I think I’m going to file a notice with my employer that I have a disability.  I’m not sure what accommodations to request.  As a Crohn’s patient the following seems mandatory but I’m new to this and am not sure this is sufficient:

• Frequent bathroom breaks (due to constant diarrhea)
• Flexible hours on short notice (due to frequent severe pain)
• Ability to work from home if people in the office begin to get sick (immuno-modulator)

Do any of you have other suggestions?  Is this something I should ask my doctor?

Week of 2/10/14

I spent all day yesterday cutting wood.  About 2-3 hours with a chainsaw cutting down trees and then cutting the wood into pieces that will fit into our wood stove (which we use for supplemental heat).  I spent another 30-60 minutes splitting wood too big for our wood stove with our maul.  That heavy work did NOT cause issues for me.  This is a HUGE improvement from just 1.5 weeks earlier.  I only feel a little sore from that.

I’m traveling for work this week again.  This morning and for at least several days, I’m actually feeling hungry and looking forward to eating.  Because I’m supposed to limit alcohol and caffeine during Crohn’s flares, I’ve started weaning myself off coffee L .  I’m down to about one 12 oz. cup of coffee / day now.

I have some mild pain in the region of my Crohn’s (this has been pretty common over the last several months).  I do not require pain medication for this pain.  In fact, my tooth hurts a lot more than most of my Crohn’s complaints for at least the last 10 days.

I haven’t failed to take a dose of medicine since I was diagnosed with the abscess even though I’ve had to take at least 4 doses of medication a day most of that time (and some of the time I was taking medications on an 1 every 8 hours schedule with another 1 every 6 hours.

I’ve been trying hard to take the supplements either I or the doctors think are beneficial.  For me this includes:

• B12
• D3
• Saw Palmetto (for the prostate)
• Multivitamin

But I don’t worry if I miss these.

If I have enough energy this week I plan to perform two runs of three miles or more.  Specifically, I plan to run 3 miles Monday or Tuesday and another 4 miles on Wednesday unless I’m feeling very unwell.  I’ll skip the weights for the first one.

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.

Diary of a Crohn’s Flare: December 2013

12/1/13 - Sunday

I had to travel for work and so suffered through this pain during the trip (usually between a 3 & 5 on my pain scale) without any pain relief. 

During the week the pain was minor enough that I didn’t require any pain medications.  I kept my activity to a minimum and did no running.

12/4/13 - Wednesday

I awoke feeling terrible with nausea and pain.  I took a Norco (hydrocodone + acetaminophen) and a Bentyl (dicyclomine) and stayed in the hotel room until I had to leave for the airport.  After I got to the airport I took a full norco and another bentyl.  That kept me comfortable during the flight home.  By the time I got to my destination airport, about 7 hours had elapsed and I was safe to drive again but I also began to hurt again.  I remained uncomfortable for the next couple of days.

12/9/13 - Monday

I traveled again this week and in general felt better than I did the previous week.  I ran on Monday and again on Wednesday evening.

12/12/13 - Thursday

This morning I felt terrible again and stayed in my hotel room until I had to leave for the airport.  By the time I had to leave, I had just begun to feel better.  I was comfortable during the trip and didn’t require any pain medications.

For the rest of the week I felt OK. 

12/14/13 - Saturday

On Saturday, I started hurting again and I had to take a norco for pain again.  Saturday night I started feeling very cold while my family didn’t feel cold.  For me, this is a sign of a fever, so I started taking my temperature.  My temperature went up to 100.5 F.

12/15/13 - Sunday

On Sunday, I woke up feeling bad again.  That night, I started feeling very cold while my family didn’t feel cold.  For me, this is a sign of a fever, so I started taking my temperature.  For several hours I had a fever of up to 101 F.  Over night I experienced a moderately bad night-sweat.

12/16/13 - Monday

I felt bad again but didn’t require pain medications.  I was able to work from home and kept my activity to a minimum.  Monday night I developed a fever of 101 F again.

12/17/13 - Tuesday

I felt bad again and realized that the pain I was experiencing felt different from a normal bowel obstruction.  My distention from bloating wasn’t as bad as I experience from a normal bowel obstruction.  Instead of radiating the pain was extremely localized.  As I told my wife, “it feels like it would be better if they could scoop it out with an ice cream scoop.”  I also told her that the pain was about the size of a ping pong ball.

So I went to the doctor’s office.  She examined me and decided she needed blood tests and a CT scan.  The blood tests showed decreased kidney function and elevated white blood cells and neutrophils (signs of infection).  The CT scan showed a large abscess about 2 inches by 1.5 inches in size.

The doctors prescribed a 2 week course of 2 types of antibiotics (Flagyl and Ciprofloxicin).  During this time I intermittently required norco for pain.  I had to remain relatively inactive (no running) because even light activity (such as walking in store) rapidly caused pain and a feeling of unwellness.

After getting approval from doctor I tried light activity (10 minutes on an elliptical).

12/31/13 - Wednesday

I completed my antibiotics and went back for another CT scan.  The scan showed significant improvement (the abscess decreased in size).  The doctor prescribed another 10 day round of antibiotics.

Diary of a Crohn’s Flare: November 2013

11/27/13 - Wednesday
After eating the high fiber chestnuts without removing their inner peels, I suffered from intermittent but continuing bowel pains for many days.  At the beginning this pain felt like a normal partial small bowel obstruction; complete with abdominal distension, pain, loss of appetite, and feeling constipated and full.

From that Wednesday (11/27/13) through the next Sunday (12/1/13), I did no running and did minimal physical activity.  The abdominal pain and bloating continued but weren’t too severe through the weekend.