Diary of a Crohn’s Flare: Treatment options

I recently saw a very interesting chart:

I found the chart at this website (another blog): 29 treatments rated by patients

It says:

The top 10 overall treatments reported for Crohn’s Disease are, as a list:

1. Low-Dose Naltrexone (LDN)
2. Surgery
3. Steroids
4. Humira
5. Cannabis
6. Specific Carbohydrate Diet
7. Remicade
8. Stress reduction
9. Small meals
10. Gluten-free/low fiber diets

Because some of the results were unexpected, I tried to find out as much as I could about this study.  Essentially, what I found was this was an unscientific study which queried Crohn’s patients about which drugs helped to alleviate their symptoms.  It didn’t evaluate the effectiveness of these drugs at reducing then inflammation and damage that Crohn’s causes to your tissues.  Because the study wasn’t scientific and isn’t measuring the effectiveness of these drugs at reducing the damage caused by Crohn’s, you should view the study results with a bit of skepticism.

First of all, ignore the horizontal access.  The reasons for the popularity or unpopularity of different treatments shouldn't affect your decisions about the right treatment for you (surgery is highly effective but unpopular because it is rather permanent, while Humira is highly effective but unpopular because it is very expensive).

Despite all of this hedging, I have to admit that some of the study’s results reflect what I’ve discovered on my own over the years.  Some of things that I’ve learned to do to reduce the impact of Crohn’s on my life include:

• Eating low-residue foods (and chewing EXTREMELY carefully when eating high residue foods).
• Eating smaller portions at meals
• Taking vitamins, especially B & D because I consistently test as deficient on these vitamins
• Taking probiotics this helps me with both frequency and consistency of diarrhea

Although I don’t have a specific program of stress relief that I follow, I find that I feel better when I exercise regularly (and this could be due to stress relief).  I have also found that my most severe bouts with Crohn’s Disease have occurred when I worked on business projects that required traveling over long periods of time.  For instance, my most recently flare occurred after traveling 75+% for work over the previous year.

Another initially unexpected result of this study was that Marijuana and Low-dose Naltrexone both appeared on the list.  However, after you consider that this study asked Crohn’s patients what treatments made them feel better, it becomes obvious why these treatments ranked highly.  Namely both drugs instill a sense of well-being in most people who take them.

I predict that opioid pain killers would also rank highly in this study as they help alleviate various painful side-effects of Crohn’s and also help slow down the digestive tract (effectively reducing the symptoms of diarrhea).  Two drugs I take irregularly don’t appear on this list: Bentyl and Levsin.  These reduce spasms in the intestinal muscles helping to reduce diarrhea frequency and reduce the pain of intestinal cramping.  However, few people would suggest that these drugs be used to treat Crohn’s disease.

The chart implies that people taking drugs like Pentasa, Dipentum, and Asulfadine) should ask their doctor to switch them from those “ineffective” drugs to “more effective” drugs like marijuana.  The problem is that drugs like Pentasa, Dipentum, and Asulfadine DO help reduce inflammation and the inflammatory process in Crohn’s patients, they just also exacerbate some of the symptoms of Crohn’s disease with side-effects like stomach cramping and diarrhea.  In this study, patients reporting increased stomach cramping and diarrhea from taking the 5ASA drugs would cause the drug to be ranked as less effective!

I suggest that you use this information by talking to people that you know with Crohn’s Disease and find out what they find effective.  Then speak to your doctor about those treatments.  Some treatments that seem effective may be harmful to you, others may interfere with your doctor’s plans for treating you.  Never lie to your doctor about what you are taking and try to include everything (prescription, OTC, and herbal)!  If you doctor strongly disagrees with how you wish to treat yourself you ARE entitled to second opinion.  However, you should also remember that you’re paying your doctor a lot of money for his experience and advice.  You’d be foolish to completely ignore it.

I can say that steroids have been both a wonder & devil drug for me.  Initially when I suffered from Crohn's flares, a short round of steroids worked wonders in me.  It stopped the flare, made me feel good, and enabled me to get on with life.  I was then able to wean myself off the drug and everything was fine.

However, over time the effective dose of steroids got higher and higher (at one point I was taking 100 mg of Prednisone / day).  I had excruciating side effects like constant pain my my legs, tremendous swelling in my extremeties, and my eyes hurt.  Then whenever I started to wean myself off the drug, I immediately started bleeding again and had to resume my elevated dose.  At one point I stayed on high doses of steroids for 18 months and suffered almost constantly from that.

Since my surgery (which worked wonderfully well for me), I have been in an almost constant state of remission and haven't had to resume taking steroids.  I advised my doctor that I would take them if necessary but that in most cases I preferred to try different treatments first.  So far, all of my doctors have honored this request.