For your healthcare team to do their job properly, they will need your input. You need to take responsibility for your health and do what you can to enable your team to work WITH you. It’s important to you both, it’s their job and it’s your quality of life and body, so establishing effective communication is key.
Buying a notebook that you can designate your “IBD notebook” is worth doing. Jot down any questions that you have between appointments so that you don’t forget to ask them. You should always take this notebook with you, even when you don’t have any questions. Reviewing the symptoms you’ve been tracking and making some bullet points could prove useful, and will save you trying to make sense of a lot of months worth of data on the spot, during your appointment. There is nothing worse than leaving an appointment and feeling overwhelmed by the amount of information you have just have received, and feeling like it’s all just seeping out of your head. Note down anything important during such as follow up appointments, test outcomes and plans/medications going forward.
When you’re flaring, create a plan with your IBD team. Don’t forget that you need to be happy with this plan, and if you are not, you have the right to say that, and to make changes. This will function as your guide and should set out what happens in the next 6 months. For example, if the first medication you’re taking is for 8 weeks, what happens if these are not effective? This plan is then in place to put your mind at ease and for the specialists to follow, meaning less time between medications should they not be working for you.
When you’re not flaring create a plan for when you are. Most hospitals are happy for you to take home blood forms and sample pots to use as and when you need to, saving the initial wait for an appointment, just to do the generic tests when you feel like a flare may be on its way.
Those that have access to an IBD nurse should use them to report new symptoms, or simply to ask any questions you may have related to IBD. Not everyone has an IBD nurse, so the wait between appointments can seem long. Make sure you note down any questions you may have!
Patient Advocacy 
[…] Inflammatory Bowel Disease is renowned for making people feel like they have no control, but ensuring you have a plan for the best self-care possible means that you can take some of that control back! Self-care isn’t just about pampering yourself, taking time out for peaceful walks and reading books, although you definitely should find time to do the things you enjoy doing too! Below are some simple but effective methods for making sure that you’re managing your Crohn’s disease or ulcerative colitis properly. Many of these will simply serve as reminders of the basics, as it’s easy to forget when you’ve been flare free for a while. Those newly diagnosed can be overwhelmed, so a quick guide with everything in one place should be a good place to start. Learn about your disease and where to look for information Communicating with your healthcare team […]
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[…] Communicating with your healthcare team is really important. To do their job properly, they will need your input, and at this stage, you should be beyond any embarrassment when talking about bowel movements. If you have an IBD nurse, use them! Most are contactable by phone and by email, should you have any queries or health problems relating to IBD between actual appointments. They can also make appointments for you sooner if needed. […]
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