Dealing with Crohn's

One of the most frustrating aspects of dealing with Crohn's is the unpredictability of our symptoms. While it's certainly true that over time, you begin to learn the telltale signs of an oncoming attack of symptoms, even long term patients such as myself can still be surprised.

Since my last Remicade treatment and possibly with a more concerted effort to take Sucralfate, I've been feeling better than I have for years. Still, it has not been without a few really bad days. During these times, patients and their doctors try to identify the triggers which bring about sudden bouts of symptoms.

One of the worst day's I had these last few weeks was when my youngest daughter came down with the flu. After a night of vomiting, we ended up taking her to the emergency room. She recovered quickly and it looked like it was nothing just a 24-hour bug, none the less, it would soon create havoc in our household.

I was the next to get get bitten by the bug and spent part of one fitful night and most of a morning in the bathroom and in bed. After about 12 or 13 trips, I finally got full blown diarrhea. Trying to keep myself hydrated, like my daughter, the flu appeared to have run it's course after about 24 hours. By that evening I was already felling better, but it had been a pretty rough morning.

The influenza proceeded to work its way through our household hitting my other daughters and finally my wife. It was a rough week and half, with most of us eating, at one time or another, a special diet of crackers, jello, and juice.

Trigger - Influenza

One thing I've noticed over the years is that as my children come into contact with different strands of influenza, even though it may cause them  to vomit, when I become infected by that very same influenza virus it inevitably causes me to have massive diarrhea. A couple of times, this has ended up with me taking a trip to the emergency room to rehydrate myself. So I always have to be careful.

It's easy to forget that when you're on Remicade or other immunosuppresants, that you're always at risk of becoming infected.  Now, according to my doctors, it's not the viral infections that I have to be most worried about, but bacterial infections. Now I'm not sure what the difference is, but I guess my body can still combat a viral infection even if my immune system is compromised. A bacterial infection, on the other hand, may be too much for my immune system to take on.  So I probably should have went to the VA Hospital to get checked out when I caught the flu, and if I hadn't started feeling better that day, I'm guessing I would have made the trip.

Trigger - Stress

Now it's fairly well documented that stress can cause a flair up of symptoms in Crohn's patients. Between my disease, trying to raise three kids, and having my wife working and studying for her Masters, things can get pretty volatile around the house. While I try to keep everyone calm, sometimes the price I have to pay is steep.

At times I can feel my guts tense up when things get hectic and people start losing control of their emotions. Again, over time, you become more sensitive to the rising tension around and within you. It's times like these that having a little Xanax can help take the edge off the tension and allow my body to relax. Unfortunately, sometimes, that's still not enough and while the amount of time may vary, I can occasionally make a direct correlation between the stress levels in the household and a sudden attack of cramping and diarrhea.

Trigger - Food

What a lot of people don't understand about Crohn's is that after a while you become a little phobic about eating. As you probably know, eating causes your digestive system to jump start itself. As new food comes into your stomach, your bowels begin to do their job, clearing space for the fresh supply of food. Unfortunately, this jump start of your digestive system can set off a chain reaction of symptoms as your intestines begin to work. For example, sometimes, the jump start of the system is so severe and immediate that you're unable to finish your meal and have to rush to the bathroom.

Other times it can take more time. A common reaction is what I've begun calling a mini-purge. While not as severe as a complete system purge, eating will often cause me to go to the bathroom somewhere between 4 to 8 times. Occasionally this will become so bad (or so regular), that you begin to associate eating with a mini-purge. So you begin to think, "if I stop eating, then I'll stop going to the bathroom." If I'm feeling really bad, I'll put myself on a liquid diet, just to give my systems chance to "settle-down" In combination with the diarrhea, poor abosorbation, and lack of appetite, this is why some Crohn's patients can become anorexic.

Now there's a lot of inconclusive research  that indicates that certain foods themselves can cause a flare-up of symptoms. Over the course of my disease I've had to make adjustments to my diet. Some of my favorite foods became quickly off-limits after my original diagnosis. These were pretty simple to detect. After eating something and then very quickly developing severe cramping, I begin to eliminate those foods from my diet. As you might expect, these were foods with very high fiber content. A food and symptom journal can be helpful in trying to identify potentially harmful foods.

Over the years, I've given up eating cabbage, oranges, strawberries, coconut, and popcorn, to name a few. Like I said some were easy to identify the relationship, but everyone's system is different. That's why the journal can come in handy. Again, according to the research there are no known tests that can conclusively rule out specific foods. So there is not a universally prescribed diet, each patient is different. However there are plenty of general recommendations.

Right now, I'm following what is called the "Low Fiber - Low Residue" diet. While the low fiber part is obvious, the lower residue part isn't. What that means is besides avoiding high fiber foods, I also avoid raw fruits, vegetables, and seeds, as well as nuts and corn hulls. The Crohn's and Colitis Foundation has a great discussion about diet, with some helpful information.

Unknown Triggers 

Then finally, there's the most frustrating category of triggers of all. The unknown. Even being sensitive to the identification of the above described triggers and following the LF-LR diet, I'll still get the occasional flare-up which catches me completely off-guard. I've kept journals and tried to identify patterns in my daily life with these unpredictable bouts of symptoms, but I've never been able to identify the trigger to some of my more acute attacks, such as a "the complete system purge." And as frustrating as these unexplainable bouts of disease are, they are even more frustrating for our doctors to provide assistance. The truth of the matter, is that as IBD patients, we know that our digestive systems are compromised. Throw on top of that the use of immunosuppresive medicines and there's literally hundreds of potential explanations. At this point in my disease and treatment, I'm most inclined to believe that some of these unaccounted for triggers can be linked to hidden emotional factors.

As I've mentioned, so far this year, I've been feeling pretty good. And with the exception of the influenza that swept through the house,  I think that my emotional state has been responsible for my other flare-ups. If I learned anything from reading Thomas Moore's "Care of the Soul", is that our unconscious mind is much more relevant to our emotional well behavior than most people would dare to admit. Through the help of my therapist at the VA Hospital, I've become much more aware of the hidden fears, unmet expectations, and anger going on "behind the scenes" of my conscious awareness. So I'm inclined to believe that my inability to manage these hidden emotions may be responsible for some of the unpredictability of my disease.