Published Aug 17, 2013
Crohn’s disease hurts.
When it hurts, how much it hurts and what to do about it are all worrisome to patients and their doctors.
I’m fortunate. For the past two years, I haven’t had much discomfort beyond light cramping and urgency, both of which are associated with short bowel syndrome in patients who have had as much small bowel surgery as I’ve had.
Most patients experience pain from cramping or soreness in specific spots in the abdomen from time to time in addition to other common symptoms like diarrhea. When I refer to using medication, I’m talking about more than the occasional twinge or five minutes of cramping.
The “gold standard” of using medication for Crohn’s pain says acetaminophen for mild pain. It steers clear of aspirin, ibuprofen and naproxen, all of which can aggravate symptoms of the disorder.
Then there’s the other pain. It’s the sharp stuff patients awaiting surgery sometimes experience. Before diagnosis, several times a year, I underwent attacks of horrific pain that rolled through my body with each wave of peristalsis. I invariably ended up in an emergency room every time and didn’t find out partial obstructions caused the pain until diagnosis years later. I likened the level of pain to that of the worst labor pains it was possible to experience.
Shortly before my first small bowel resection, I was driving with my daughter to the pediatrician’s office. I suddenly had a pain so sharp that it felt like a football player had kicked me in the gut. I had to pull off the road. Fortunately, it subsided, and I was able to continue driving.
This is the kind of situation that makes patients ask about narcotics, which hospitals use to control pain after surgery. It’s an appropriate question when there are days when it’s impossible to even stand up straight due to pain. Most doctors are reluctant to issue medications containing narcotics to Crohn’s patients except immediately after surgery.
The reason isn’t profound. They’re afraid of the danger of addiction.
For at least 10 years, I made a habit of keeping a small amount of a medication with a narcotic in the house. I simply asked the doctor to prescribe no more than 20 pills, which could be taken every 4 hours, with no refills. Since I was definitely prone to partial small bowel obstructions, was an experienced patient and had a history with the practice, the gastroenterologist had no problem with this.
I haven’t had any in the house for a couple of years. Being free of major pain has given me an opportunity to look at other ways to control discomfort. The first one most patients mention is changing what they eat during challenging times.
Short of a trip to the emergency room, it’s often impossible for a patient with Crohn’s disease to see a healthcare provider the same day discomfort escalates. In the meantime, one sensible way to help yourself is eliminating anything from your “normal” diet that might irritate the disease even more. Get the list from your physician before you need it.
My experience with five Crohn’s-related surgeries is that pain can suddenly strike even a couple of months after a procedure. If this happens, despite the surprise, it’s helpful to remain calm and place a call to the doctor to report what happened. Every pain that’s associated with Crohn’s disease doesn’t necessitate a trip to the ER.
Patients also talk a lot about reducing stress. Lest there be any confusion in that statement, stress does not cause Crohn’s disease. It can aggravate any major illness, including Crohn’s.
The stress I’m talking about is the one associated with tensing of the body during pain. It’s worth taking the time for a couple of sessions on meditation, deep breathing and other techniques that will help the body relax, which helps lessen the impact of pain.