Checklists are something I like. I enjoy checking off items on a to do list, making grocery lists (helps stay on budget), Christmas shopping lists so that I don’t forget people. They’re great to help me stay organized.
There is one area where I think I could benefit more from checklists. With my health. With how I handle Crohn’s Disease. Maybe not a pure out checklist, but a more detailed journal of what I went through over a day/week so that I can say to my doctor with confidence what is going on in my body. For years my doctor asked “How many bowel movements per day?” and the best I could do was a guestimate. I don’t like that phrase, but I don’t think I was accurate enough to say an estimate of my trips to the washroom. Was I taking my meds? As best I can recall, yes, but I always seemed not to need refills when I would see him. Would I get my blood work done? Actually, this one was easier for me and I did keep regular blood work. Finally, when was the last time you saw a doctor or made an appointment? If I went months (or close to a year) without seeing my GI, he’d always say I should book more regularly. I should see him and report the issues more regularly while they were fresh. This is why eventually he stopped giving me huge refills and would make appointments to see me every 2-3 months.
So apart from what I mentioned already, what should we as patients include? An area that is very ignored (especially early on after diagnosis) is mental health. How we feel everyday in our heads is hugely influential to how we learn to manage a chronic disease. If we associate or feel negative all the time, it becomes harder to see that life continues even with a disease. I experienced early on that my mind set helped me return to class regularly.
I would encourage maybe not the amount of bowel movements you have, but the consistency and contents. How often you experience bloody stool or mucous movements may help to adjust your meds and evaluate if you are on the right mix. A lot can be discovered about our bodies through stool and though I don’t think diarrhea is the worst IBD symptom, it is something that may indicate issues.
Fatigue and days when you are not able to function as you would like can be very significant. Apart from regular recovery, which we all need, the inability to function impacts how we feel about ourselves and often puts our security (job, friends, family) at risk. If this occurs with other symptoms, there can be something significantly wrong. It can indicate inflammation throughout the body and also bleeding.
There are many symptoms that you know your body will go through either during or right before a flare. When I flare up, one of my first indications is erythema nodosum. For me, these are very painful red or purple bruises that tend to show up on my shins. They swell, they hurt (just existing they hurt), and they tend to indicate that trouble is around the corner for me. Other people may not experience this. There may be symptoms I haven’t had or I tend to right off.
Knowing yourself and seeing patterns can help you to be a more proactive patient. Lists and keeping yourself informed can help. Being able to accurately describe what you’ve been through, how you’ve managed, and what works will help you and your support team (doctors, family, friends) develop a care plan to keep your life moving forward.