When dealing with Crohn’s and Colitis, having a Patient advocate is very important and I have been blessed to not only have a twin sister to support me, but other family members, friends, and even Nurse Case managers from UHC(my health insurance company) and pharmacists that have helped me take an active role in my healthcare.
These diseases, Crohns and Colitis, can be very difficult to manage because there are so many moving pieces to remember, take into consideration and react to during the initial diagnosis and ongoing management of the disease. We recommend always bringing someone with you on your office visits or testing. These are difficult diseases with difficult decisions, so it is nice to have another set of ears there listening for you.
A little trick my mom taught me – always position someone in front of the door after the doctor walks into the room. It is important to come prepared to your appointments. Have your list of questions ready to be asked, and then make sure you get them all addressed before your human barricade steps away from the door. It is very difficult for a doctor to slip in and out of the room if someone is blocking the door. Bring a pen or Ipad, so that you or the person with you can take good notes and ask all of your questions.
It is important to have a Voice in your treatment plans, and by having someone with you or that you can ask questions to other than your physician or their staff can be very important. Do not be afraid to ask for help from the people who love you, it is beneficial to have someone you can lean on. Don’t take for granted the people who care about you and their desire to see you well and to be able to help you in some way. They can feel as helpless as you when the disease is making you miserable because they can’t stop your pain or sadness, so by letting them take part in your care plan, you might be helping them as well.
I think it is even more important to have someone by your side whenever possible during a hospital stay. It is nice to have the distraction of someone there to talk to, watch TV with or even walk around the floor once you are up and moving. They can also be another set of eyes and ears during your hospital stay to ensure that you are getting the right medication, quick response times by the nurses, and all of your questions answered when the doctors/fellows/interns/nurses come into the room during your hospital stay.
You can also be your own Patient Advocate. It is important to ask questions, understand your options and make sure that you are comfortable and comprehending the information and directions that are being asked and told to you. I like to repeat the question and provide a response. I also like to make them write down all directions for prescription uses, drug therapies and surgical procedures. The Drug therapies associated with these disease can be complicated, and you usually need to monitor your kidney or liver functions during your use of the medications. You need to make sure to have a conversation about any drug interactions with the different therapies you are using, as well as the type of food or alcohol you should not be using when you are on the medication.
For any surgical procedures having someone there to support you during the pre-and post operative time periods can be very important. You need to make sure you and your Patient Advocate understand the the procedure and the impact it will have on you; including the length of time in the hospital, recovery timeframe in and out of the hospital, potential complications and what to expect while in the hospital with food, activity level and medications.
You are the most important person in your healthcare plan. Take action and take the steps necessary to feel comfortable with the path you are traveling to a better life.
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