An open letter to hospitals

New ostomy patients get most or all of their initial information about living with their stomas from ostomy nurses – usually verbally. And that’s a problem. The information is either inadequate or so detailed that new patients can’t absorb it all.

As I see it, the solution is for nurses to have booklets or information sheets to hand out to all patients. There are some good guides out there, and some ostomy association chapters provide patients with amazing packages (like the one in Hamilton, Ontario, Canada) – but they’re few and far between.

I became aware of the scope of this problem while talking to ostomy nurses and reading the posts of ostomates in online support groups (I belong to a number of groups, with over 15,000 members worldwide).

  • Several nurses reported that while they know a lot about medical issues, they don’t feel as confident in their ability to deal with the more practical realities of living with an ostomy.
  • Support group members reported that they received little or no information, or so much that it was overwhelming. Over and over again, I read comments like “I’ve learned more about it in 2 months on this group than the previous 14 months put together,” “I’ve had to Google most questions about mishaps,” “We aren’t told enough,” “The stoma nurse only has so much time … as long as you can change the bag you’re ready for the world,” and “We can’t take it all in anyway.” Many expressed the wish that they’d been given written material to digest over the coming days and weeks.
  • Another issue is that many patients don’t have access to an ostomy nurse once they leave the hospital – because of distance, finances, or availability. So unless they have the skills to access information online, they’re restricted to the limited knowledge they got at the hospital, and if they’re lucky, a family doctor with some experience in the area.

The most common concerns from ostomy support group members were inadequate information about:

  • Parastomal hernias – how real the risk is, and how to reduce the risk. Most often they get too little information, too late.
  • Mucus – many of those with an intact rectum/anus passed painful mucus plugs at some point after going home. They were surprised and terrified. “I felt like my insides were coming out. No-one warned me!”
  • Supplies – where and how to order them.

Surely it can’t be too difficult to produce a little booklet covering the basics. It would also include where to get support (local and online) and find more information on specific issues that might arise in the future, as needed.

If all hospitals had this, it would (a) get patients started with some degree of confidence, (b) ensure consistency in the delivery of good information, and (c) reassure nurses that their patients don’t have to rely on memory to retain it all, especially at a time when they’re under such physical and emotional stress.

I think this is do-able. Don’t you?