This letter is to inform you that you are now caring for a patient with Crohn’s Disease. There are a bunch of things you should know about the disease and how it will affect your life.
First, remember that the person you are taking care of has the disease, not you. Right now they are probably scared because they have a uncurable chronic illness. What they need most is love, affection and some sympathy. They are in constant pain and will probably never feel “normal” again. It is your job to help them get back to normal as best as THEY can.
Second, listen to them. Don’t ever assume you know what they are going through or what they feel. If they say they have pain, believe them. Sometimes they may seem alright, but most times there is a pain within their gut. Think about how you feel when you have a sunburn. Well, Crohn’s is like a sunburn on the inside of the intestines and it is constantly being touched. Ah, I see the lightbulb go on above your head…you have an idea now on what they are feeling like.
Next, don’t try to force feed them. An appetite is a tricky thing for someone with Crohn’s. One day they can be nauseous and not want to eat. Other days, they will want to pig out. Also, they are going to find that there are a bunch of foods that don’t agree with them. If they want to try a specific diet, let them. If they say they can’t eat a certain food…believe them. Don’t try to make them eat something because it is healthy. Not everything healthy is good for someone with Crohn’s.
Your patient is not going to like the medicines that they are on. If they are taking Prednisone, they are going to get depressed. You should know right now, they will gain weight. Their face will swell up and this is called a “Moon Face”. Just let them know that it is normal, they are still beautiful or handsome, and that it is temporary. One day they will come off the steroid and their weight will come down. Now, sometimes if they are in a constant flare, they may lose weight. Try to give them some supplemental foods like Ensure to help maintain their weight. Don’t ever mention how skinny they look. They know they are losing weight and don’t want to be reminded of it.
My last advice I can give is never ever ever say they are sick. They have a chronic disease that will be with them all their life. They know how they feel and they want to try to look and act normal. To them, it is something that is now part of their life. To them, being sick is like catching a cold or a flu. Having Crohn’s doesn’t mean your life ends..so why should they think they are sick. Treat them as you would treat anyone else. Play with them. Talk with them. Give them hugs and kisses. Let them know that their life will move along and that they have nothing to be ashamed off.
Thank you for taking the time to read this letter. I hope it will help you in caring for your new patient. If you have any questions, feel free to ask me. There is also a huge community of people with their condition online. Turn on your computer and look for them. They will accept you and your patient into their family with no questions asked. You are now about to embark on a great journey.
Dr. Ira B. Darling