Before I begin, I feel I should state the obvious: I am not a doctor and I have no medical training (unless you count CPR training when I was a camp counselor in high school). If you have IBD and feel it’s an emergency, please go to the hospital.
Having said that, I’ve found that when it comes to liaising with GI doctors, even the very best ones, symptom management is not a high priority. They’re rightly concerned with the root cause of symptoms, and I do very much agree with them that virtually no diet or lifestyle change, short of eating only pre-digested mush, will cure IBD. Any literature out there claiming to ‘cure’ IBD through some wonder diet is utter bunk.
The issue, though, is that most doctors don’t dedicate much time to helping patients through symptom management. The party line of ‘avoid your trigger foods’ is too self-explanatory to be helpful. Moreover, Crohn’s symptoms can manifest even in the presence of tame, easily digestible food. Symptoms can vary drastically but can be grouped based on the severity of the disease and its location within the GI tract. I’ve worked with great gastroenterologists, but none of them has said something to the effect of “your disease is XYZ severe and concentrated in ABC area, so these are the symptoms you’ll likely be experiencing and here is how to mitigate them without a hospital stay.”
So, as someone with moderate to severe Crohn’s disease with a very narrow stricture in my ileum and partial fistulization, here are some thoughts on how to avoid the ER:
- Don’t overload the GI tract. If you have severe narrowing in your small bowel, one of the most important metrics to track is the volume of your food intake. It doesn’t matter if your entire diet consists of Crohns-friendly foods: baked chicken, white rice, avocado, etc. If you eat too much of anything, you can aggravate your stricture and try to force too many cars down a one lane highway. The solution: eat only when you’re hungry and eat only 40-60% of what you normally would. This will mean you’ll have to eat more frequently, but that can be beneficial for boosting your metabolism, and at any rate it’s a small price to pay to avoid being debilitated.
- If you feel bloated or blocked up, go on bowel rest. Immediately. If you have a stricture, it’s common for symptoms to pop up unexpectedly. You might have bowel distension, constipation, abdominal pain, nausea or all of the above. If you feel even a slight twinge, go on bowel rest and consume only clear liquids until the symptoms pass. It’s extremely hard to resist the temptation to eat, especially if the symptoms are only faintly noticeable, but discipline now will help you avoid disaster later.
- Supplements: Stool softeners and Tylenol. One major symptom of a small bowel stricture is constipation, and most of the general public would naturally turn to laxatives to relieve such an issue. This approach, especially with respect to osmotic laxatives, can be very dangerous for those with severe narrowing, because it can try to force liquid & food through a collapsed opening and result in extreme pain, hospitalization or even a bowel rupture. A safer option is stool softeners, which will get the job done with much lower risk. As far as pain is concerned, it can be tempting to use narcotic painkillers if your doctor has prescribed them, but they are actually the worst thing to take during a flare, because they naturally slow down the GI system and promote constipation. Instead, tough it out, drink water (or chew ice if the flare is severe) and take Tylenol every 4 hours until the worst has subsided. Finally, if nausea is a frequent symptom, ask your doctor about Zofran (ondansetron), which is a very strong anti-nausea drug typically given to patients undergoing chemotherapy or serious surgeries.