There are so many different paths to an IBD diagnosis.
Some people will find out through a length period of feeling unwell and under going several tests.
Some people will find out after a few weeks of being severely unwell.
Some will find out suddenly, through an emergency admission to hospital or requiring emergent surgery.
IBD does not discriminate with who gets it. There is no rhyme or reason to why things happen, and this is certainly one of those times it’s defiantly true.
But once you’re diagnosed, how exactly do you navigate all this new information? What do you ask, who do you ask and when do you ask?
Well, typically, you’ll have a follow up with a Gasgtronelogist – a doctor who is trained in the speciality of all disorders and diseases of the GI tract. That is a long list, but IBD is a bit part of this for some doctors. You should also be made away of your specialist IBD nurse attached to the department who aids doctors with the management of IBD for many patients.
Now it’s been a decade since I went through my own diagnosis journey – you can read all about it here – and I did not ask enough questions! I was probably too shy, too unwell and just fed up at the time of being tired. But once I got on the right medication for myself, and my strength and weight picked up, I did take more of an interest in my care. And I have done it ever since. I like to know the why’s and how’s to what goes on inside my body and what I’m taking in the best interest of my health.
- What is inflammatory bowel disease (IBD) and how is it diagnosed?
- Do I have ulcerative colitis or Crohn’s disease?
- How is IBD treated?
- How might smoking affect my symptoms?
- What are symptoms of IBD flares?
- What are the possible complications of Crohn’s disease and ulcerative colitis?
- Will I need an operation, and if so will it cure my IBD?
- Am I at increased risk for colon cancer?
- How might my diagnosis of IBD affect my ability to have a baby?
- Are my children at risk for developing IBD?
- What should I do if my symptoms return?
- Which symptoms should I consider an emergency?
- When should I have a follow-up appointment?
- How can I get more information?
Specific to your own ‘brand’ of IBD:
- What specific area(s) of my intestine is (are) inflamed?
- Could any condition other than IBD be causing my symptoms?
- How is IBD different from irritable bowel syndrome (IBS)? Can I have both?
- What medicines are right for me? How soon should I expect relief?
- What are the potential side effects of the medicines?
- What should I do if I notice any side effects?
- Do I need to take my medicines even if I feel well?
- Should I change my diet, take vitamins or other supplements, or make other lifestyle changes?
What I wish I’d known as a newly diagnosed patient:
- That there is a huge online community out there.
- Research things for yourself and become your own advocate.
- “No cure” does not mean “no improvement”
- Pace yourself – don’t pretend you’re not ill when you are.
- Your mental health is as important as your physical health.
There are three stand-out information pages for you to read:
Healthline’s “Ten Important Questions to Ask your Doctors about Crohn’s“, The University of Michigan’s “Frequently Asked Questions about IBD” and Crohn’s and Colitis Your Guide to Appointments.
Remember: these questions are not an exhaustive list of what you can ask. You might find something else to add or find some irrelevant. Remember, this journey is your own and only you can ask what you think is relevant to you at this time. There is no silly, small or stupid question when it comes to your health, and asking more than once is not a bad thing at all; it takes time to get your head around all of this.
Until next time,
Do you have any questions or queries? Or just want to share your own experiences? You can leave me a reply here or leave comments via my social media accounts – on Twitter, find my blog page on Facebook and over on Instagram