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Crohn’s Disease: Living with a Patient

As a long time Crohn’s patient, I am often sought out for advice on handling the disease by newly diagnosed patients and their families. And while awareness of Crohn’s is much greater than it was twenty years ago, most people really don’t understand much about the disease or the way it impacts a patient’s life. So I’ve decided to write a four-part document that hopefully explains to new Crohn’s patients and the general public what to expect and how to cope. These posts cover the medical symptoms tips for patients living with the disease and tips for people who know someone living with Crohn’s.

So, you’ve just found out a friend or family member has Crohn’s Disease. You probably have a thousand questions swirling around your mind and no idea where to begin asking them. What do I do? Where do I go? Can I get it?

First, don’t worry about catching Crohn’s from someone who has it. While the origins of the disease are unknown, the one thing that is certain is that it isn’t communicable. Second, read the posts regarding symptoms and treatment to get an idea of what your loved one is experiencing – and what they’re likely to go through in the future.

One of the least understood aspects of Crohn’s Disease is the frequency and degree of pain that Crohn’s can inflict on those afflicted with the condition. I’ve compared it labor pains – and my wife has told she doesn’t think I’m far off. When flaring, the constant pain has a dual effect on patients: first, intense pain impairs anyone’s ability to think clearly. Second, the pain meds some doctors prescribe are narcotics which will cloud judgment even further. This relates to the first two things you can do for your Crohn’s patient.

You shouldn’t let them make important decisions alone. You won’t intrude in their personal business by simply asking, “Are you sure?” if you think they’re making a foolhardy choice. Chances are once they’ve achieved remission, they’ll thank you for dissuading them from buying the $5,000 TV. If you’re a close relative (such as wife, husband, mother, father, etc.) speak with their doctors often. If possible, go with your loved one for medical appointments. In this way, you can be an important resource for them, gathering information about treatment plan, medications, future tests and the like when they are at their most vulnerable. You can also gain peace of mind by being fully knowledgeable and participatory in their treatments.

Often, what Crohn’s patients need more than anything else are the simplest things. During a flare, they may not be hospitalized and can often appear “normal” to the casual observer. But they’ll experience extreme fatigue and intense pain when symptomatic and doing everyday tasks can take their toll. And since Crohn’s patients are susceptible to stress (even more so during a flare), the pressure of not being able to attend to those little things can compound an already difficult situation. Offering to pick up a meal or do the dry cleaning might take you an extra 5 minutes, but can relieve your friend of what may seem to them an impossible task.

Perhaps the simplest and easiest – yet one of the most important – things you can do for your friend is keep them in good spirits. Depression is common among people with Crohn’s. Stop to think about it for a moment: how would you respond if you were constantly in and out of hospitals, suffering through intense pain, having to run for a bathroom every ten minutes and getting poked and prodded by teams of doctors? A phone call; dropping by to say hi or simply sending the occasional “Hang in there” text message can do wonders.

It is also important to understand that even when all seems well, your friend may not feel 100% comfortable getting out and about as they once did. For a person with Crohn’s, one of our greatest fears is needing a restroom NOW and not being able to find one. You might want to go to the beach or to the park; they may not say so, but they’ll lack the confidence in their bowels to make such a trip feasible. It’s still important for them to get out of the house and socialize, though – think of an alternative they might enjoy. Shopping malls, movie theaters and other venues with easily accessible public toilets are all good.

There are also various references available for people who know someone with Crohn’s Disease. A great resource for families and friends is the Crohn’s & Colitis Foundation. They do tremendous work in assisting both Crohn’s patients and their support network. Another terrific resource is the Cleveland Clinic, one of the leading research centers in Crohn’s. Both organizations are non-profits; if you’re so inclined, they appreciate donations.

The important thing to remember is that your friend hasn’t changed. Yes, they now have a terrible illness – but the person inside is the same person they were the day before they were diagnosed. They still enjoy doing the same things, but they will need a little more reassurance, a little more compassion and a little more understanding going forward.

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