Once you get that diagnosis, in a weird way it’s almost a relief to know that something is actually wrong with you. After months of feeling sick and being told many different possibilities of what was happening with me, I was happy what was going on finally had a name; a name means I’m not crazy, a name equals treatment options. When I was diagnosed, I was in the hospital going through test after test to hopefully figure out what my major malfunction was. Turns out it was something I had never even heard of Crohn’s Disease.
I have what?!
When my doctor came in to discuss my test results, I was more than a little thrown. My mind had not jumped to a place where I would be told I had a chronic illness. I was still convinced I had a really bad case of the flu and would be sent on my way. However, Crohn’s Disease was not something I was familiar with, or quite honestly had ever even heard of. He explained what it was, the impact on my day-to-day life, medication options, handed me a pamphlet and left. That was it, my introduction to a disease that had the potential to control my life forever from this point forward.
Find a Specialist
Doctors specialize for a reason, to be knowledgeable in one particular area of the body or disease, so they can give patients the best possible treatment. General Practitioners are great to have, everyone needs one for yearly examinations and basic health care needs; however, when faced with a specific disease or illness you really need to be under the care of a specialist, so ask your General Practitioner to refer you to a Gastroenterologist as soon as possible.
The Medication Merry Go Round
IBD (Crohn’s and Ulcerative Colitis) is so hard to diagnose and sometimes even harder to treat. What works for one person doesn’t always work for another. Medications and even combinations of medications vary from person to person based on symptoms, the severity of the disease, and location in your GI tract.
You can help your specialist by tracking your side effects, how you feel each day, plus any changes to symptoms and bowel movements. Taking this information back to your specialist can be invaluable to them when making your treatment plan. It also maximizes your time with them, since recalling a month or two of information in a 15-minute appointment can be difficult. It can be frustrating when trying to find the right medications (or combinations of medications), but be patient. I get it, I went through months of trying different medications, but once the right one or combinations are found it’s like magic!
Become one with your Day Tracker
This is another great example of how the Pack Health Day Tracker can help you regain control. Daily tracking is a great reminder to be sure you took your medication(s), you can note your daily pain levels and even monitor your stool (which for those of us with IBD can say a lot about what”s going on).
If tracking feels like an overwhelming task, start with just one or two things you take note of each day. Or make it your Tiny Step of the week to set aside 5 minutes each evening for reflection. You don’t have to write down every detail but talk to your Health Advisor about what you want to track and ask them to hold you accountable.
And always remember WHY you’re doing it. For example, taking information to your specialist can be a catalyst to get you on the right medications and on the road to feeling better!