I remember seeing my surgeon and stoma nurse prior to surgery with a notebook full of questions I wanted answered! If you have any questions, concerns or worries – make sure you ASK! It’s one of the best ways to prepare yourself (especially mentally) for surgery. I had several pre-op visits with my surgeon and stoma nurse and I took the opportunity to ask about everything that was on my mind!
Talking with other ostomates might be beneficial too. It’s not quite the same as having it as your own reality, but it definitely helps give you an idea of what to expect.
There won’t always be an answer for everything and some things will be dependent on other things. It’s not all black or white, and is different for everyone when it comes to ostomies, but it’s still worth asking!
Questions for my surgeon:
The thing I was most concerned about was where the inflammation (from Crohn’s) was located. I knew that I had severe inflammation in my large intestine and rectum, but what about my small bowel? Prior to surgery I had scans to ensure that my small bowel was free of any inflammation and I also asked what would happen if Crohn’s does appear in my small bowel down the track?
Would I still have the urge to go to the toilet?
Exactly where will the stoma site be? Can this be marked before surgery taking into consideration your pant line and the type of clothes you normally wear?
Will I still need to take any medication post-surgery?
How would they perform surgery – keyhole or open? How long would the procedure take?
What sort of pain relief would I have?
Recovery time / how long would I be in hospital / how long off work?
Will I still be able to have children?
One thing I wish I had asked more about was about how things move around after surgery. My uterus dropped back after surgery and is now retroverted which causes me some issues. Obviously they cannot predict this and it was the least of my worries at the time, but in retrospect it would have been nice to understand and have been warned about these sorts of possibilities.
What are the fees? Is the procedure and hospital covered by public or private health insurance?
Questions for my stoma nurse:
How often should I empty and change my appliance? I was given a great DVD to watch that showed people changing their ostomy appliance – it was very insightful!
Eating and drinking – what can / can’t I eat and drink and for how long? I had a dietician come to see me after surgery a few times whilst I was still in hospital to run through all of this.
How do I order my ostomy supplies?
What can I do post-surgery? – exercise, heavy lifting, preventing hernias.
Questions for ostomates:
Speaking with other ostomates can be invaluable, but keeping in mind that everyone’s experience is different. Whilst the surgeon and stoma nurse will be able to answer the technical stuff, other ostomates can tell you firsthand what it’s like (for them) living with a stoma.
Why and how long ago did you have surgery?
Is your life better since surgery?
Being prepared and armed with information by asking questions should help with the transition into ostomy life. It’s an adjustment, but going in with some knowhow of what to expect, as well as an open mind and positive outlook certainly helped me!