Monday, May 5, 2014

Excellent Resources for Diverticulitis

Patients really are the best. Of course, doctors are important and necessary for treatment. However, as I have learned from our journey with Morgan and my recent healthcare experiences, patients really do have invaluable information to help other patients. I have read thousands of posts now by patients with diverticulitis. Some in their 20's, others around my age, and some in their 60's. The stories are all very similar. At least half of them are confused over what they are supposed to do. A large percentage of them are worried that their doctor isn't taking them seriously or isn't up to current research on diverticulitis.

For example, there have been several studies that say that corn, nuts, and seeds don't have anything to do with diverticulitis. Most doctors still tell patients that is what causes it. Having said that, many patients on this message board feel that these items may be a trigger for them. But I think the point is that what happens seems to be very specific to each patient. What triggers it for one patient does not trigger it for another.

Last fall, there were at least two studies that said that lack of fiber and constipation did NOT have a higher rate of diverticulitis and that too much fiber may actually CAUSE diverticulitis. Yet, I was just discharged from the hospital and told to do the low fiber/low residue diet for a few weeks and then to add as much fiber as I could tolerate to my diet. Many people on the message board seem to indicate that too much fiber is bad for them and causes flares. Again, it seems to be individual based.

ALL of the patients who have had multiple attacks are frustrated and willing to do just about anything to get their life back. There are many posts saying that they are surprised at how little is know about this disease. It seems that the current standard to have surgery is after 2 attacks, but now there are studies that show that four attacks is a number associated with better outcomes.

How do these patients know all of this information? It appears that the doctors are either not aware, dismiss the studies, or choose not to share all the information with their patients. Patients are motivated. They are in pain. They are frustrated. They miss work. They can't take care of their family. You can hear the anxiety and fear in the posts. So, while having to rest to get better, they read. They discover. They share with each other.

Here is a FANTASTIC site that I found put together by a patient.

Here is the great message board I found.

Do you know of other great resources? Please share if you do.

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