Questions to ask when newly diagnosed

[millerkat7801]

I have my scopes next week for what is presumed to be IBD. I am very much in denial that this could be IBD, but if it does happen to be what questions are essential to ask? What questions do you wish you had asked when newly diagnosed but didn't?

 

[westernbuddy]

You will have sedation for an endoscopy and colonoscopy.
Best to get a print out of the findings if any and arrange a follow up appointment for questions.

 

[valleysangel92]

Hello,

Sorry I'm a bit late on this but I hope I can still be helpful. I was only 19 when I was diagnosed and I went to a lot of appointments alone so there were a lot of questions I didn't think to ask.

• Ask where your disease is and how severe they think it is .
• Ask if you have any nutrient deficiencies and if they plan to give you supplements.
• If you're unsure what to eat, ask about getting support from a dietitian.
• Ask what treatments they are planning in both the short and long term, when I was first diagnosed I was put on a steroid but never told about maintenance medication to help keep me stable.
• Ask how long they expect your treatment to take to work, this way if you find after a set time the treatment isn't working then you know you need either a stronger dose or a different treatment.
• If you need help with symptoms while waiting for medications to kick in, ask how they plan to do this, it could include pain meds, anti sickness, anti spasmodic meds etc. Symptom management is a big part of chronic illnesses and can be overlooked.
• Ask how often you can expect follow up appointments, bloods etc.
• Ask if there is an IBD nurse available and how to contact them
• Ask what you should do if your symptoms suddenly become severe and what circumstances they would consider need a visit to the hospital.
• There is no such thing as a stupid question in this situation, anything that comes into your head, ask.