The article “Taming the Inflammation of Ulcerative Colitis” provides a good overall definition of clinical remission: it “is defined as formed bowel movements, no urgency and no blood in the stool.” I’m not quite there myself, but I believe I’m finally starting to enter it. I don’t know if it’s thanks to the Remicade, the Imuran, or both, but I can honestly say it’s not due to diet. (At least, not fully). I mean yes, I’ve been low-to-no gluten for months now, and low dairy. For the past two weeks I’ve also been reintroducing fresh vegetables and fruits, but before that it was only over-cooked mushy stuff. So, technically, next to no produce. (Remicade caused another problem, the dreaded “C” word (that’s right, constipation) which although was very much welcome for a day or two, ultimately became hellish when the aforementioned “urgency” met with no relief. That is, until the return of berries and spinach salads.)
My restricted diet served only to keep me more “comfortable” (i.e., less cramping, gas and bloating) but didn’t affect my ulcerative colitis. It continued progressing despite various treatments, and despite me omitting things like artificial sweeteners, processed sugars, nuts, beans, etc. Sure, maybe I could have been more diligent and followed a more strict paleo or “Specific Carbohydrate Diet” like everyone seems to be advocating. It’s just there’s one problem with that – I don’t intend to stay inside the lines forever. When I am better, I fully intend to return to eating and drinking some of the items on the nutritional no-fly list, like coffee, chickpeas and chocolate. (Who am I kidding – I haven’t given those up!)
In truth it pains me to write this, because I am not a “drug” person. I avoid even Advil and Tylenol if I can help it. I’ll go an entire day trying to overcome a headache or muscle aches before giving in and taking one single dose. Thus, I hate giving the big, nasty, expensive drugs any credit. So here’s where I throw a wrench in things.
Diet took the edge off, the big pharma drugs are finally kicking the healing into gear, but you know what really made a difference for me? Rest. I was fortunate enough to receive four weeks of short term disability. Four weeks of sleepless nights that didn’t matter, because I could recapture that sleep whenever I wanted. Four weeks of no public transportation, no nine hour days forced to stay upright and wear torturous business casual attire. No nine hour days spent managing UC and its ugly symptoms, sequestering myself in the company restroom for ten to fifteen minutes at a time, five to six times or more. You get where I’m going with this, right? Four weeks of next to no stress.
Stress may not cause UC, but it most certainly exacerbates it. (Here’s a great article from Evidence Based IBD on stress and depression and the holidays and another from the National Center for Biotechnology Information titled “Stress and exacerbation in ulcerative colitis: a prospective study of patients enrolled in remission”.) Another thing that exacerbates it (for me anyway)? Activity.
My docs urged me to stay active, so even while out of work I took light walks, either outside when the weather was good, or inside on the treadmill. I tried to do a little something, even thirty minutes’ worth, every day whenever possible. But that, I came to find out, is entirely different than going non-stop for ten hours or more the majority of the week. Standing on the train, walking to work, being up and down and all around at the office–that turned out to be too much for my body. It wasn’t resting, it was agitated and drained. After about a week at home my frequency began to decline. I went from eight to ten times per day down to four to six. After about three weeks the insomnia declined. My personality became a little more normal, less irritable and prone to mood swings despite the ‘roids. But guess what’s happened since returning to work? Frequency is back up (though nowhere near what it was), cramping and pain have increased, my fatigue levels are much higher come end of day, I’m cranky, and I’m seeing a little bit more blood than I had been. The two culprits? I can only conclude my UC demons are stress and activity.
Now, it’s not like I can stay out of work until I’m 100% in the clear, or (more desirable) forever so I never flare again. I’ve got to figure out a way to manage this so that someday I can get off these drugs and not have problems. And again, this is just my personal experience. I have no doubt that for many people diet is their demon, and changing it up will induce remission. I mean, all we hear is that IBD is “different for everybody.” All I’m saying is, if you’ve modified your diet and still aren’t seeing positive results, look elsewhere. After all, UC is a many-splendored thing.