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.

Sunday, May 4, 2014

Why Getting Your Records and Understanding Them Is So Important

If you have been following my Diverticulitis journey through healthcare, I have an important message. Please be sure that you get your medical records and read them. Nobody is more likely to catch errors than you or your family. It is your body, your history, and it is much more likely that something abnormal will jump out at you. This is one of the main reasons we started CareSync. it was so difficult for me to get all of Morgan's medical information and then to have access to share it in a meaningful way was very time consuming, costly, and difficult. A binder was the most effective thing I found before CareSync, but that is extremely inefficient.

So, my CT report had a significant error in it. As you know, I was hospitalized for 5 days for diverticulitis, but this is what the report said.

"CT scan does not show mild focal wall thickening and surrounding mesenteric edematous changes within the very proximal rectosigmoid consistent with acute diverticulitis."

It goes on to say that everything else was normal except small kidney stones in my right kidney (shocker. I seem to always have at least one kidney stone).

Does anyone see the word that was a typo? I will give you a hint. It is not a medical word. Still don't see it? It is the word NOT. It says it does NOT show changes consistent with acute diverticulitis. I contacted the hospital when I saw the report thanks to Dr. Mihale and CareSync Medical Group.

I was going through my mail from yesterday, and I got a letter from my primary care doctor. It said,

"We received your CT scan of your abdomen and pelvis from Florida Hospital Wesley Chapel the other day, and Dr. Yousef found some kidney stones. He would like you to come in for follow-up. Please call us to schedule an appointment."

Now, I was lucky in this case that I was actually admitted to the hospital and got a lot more information over the course of 5 days, but imagine that I had this test and went home from the ER. My primary care doctor would never have even questioned the CT report. Imagine looking at that report a year from now. Would anyone remember or believe that it was an error at that time?

At CareSync, we have found that about 34%of patients have reported finding errors in their medical record when CareSync gets them and puts them into a format that is easy to read.  I have found that in the QA process for CareSync, it is MUCH easier for me to spot an error in a member of my family quickly than it is for QA to check data back and forth on fake patients we use for testing. I have realized through this process that doctors are looking at data like our QA look at our fake patients. The data requires a lot of study to catch errors. It is also kind of like when you write a paper and don't see the errors because you are so familiar with what you wrote. As a patient, we can be the best editors and error catchers that exist.

Please be sure to get your medical records. Of course, I highly recommend letting CareSync do the work for you, but if you don't want to use CareSync, then go to your doctor or hospital and request the records yourself. Read them. Look for things that might be wrong. It really is important.

Saturday, May 3, 2014

What is Reasonable Service to Expect?

My healthcare struggles continued this week. I was dicharged from the hospital on Sunday night (at 8pm - kind of silly that it too until almost 6pm for my doctor to even show up to see me on Sunday, btu that is another story). By Wednesday, I was having worse pain than when i was discharged. I was assuming the antibiotics weren't working. Considering they keep saying that I need to be careful or I will have to have surgery, I am being careful and cautious. I do not want to have part of my colon removed unless I absolutely have to do so.

So, I called my doctor's office at 8am on Wednesday morning and left a message with whoever answered the phone. As a bit of background, I have been seeing this GI doctor since December of 2012 and this is my third diverticulitis attack that he has treated. She took a message and said he would call back. By noon, I was crying in pain and very nauseated. I called back and spoke to the same person who informed me that it might be tomorrow before he called back. I reiterated to her that I was feeling worse, just got out of the hospital, and I that I really needed to talk to him or someone from his office who might be covering. She said that she would TRY to get him to call me that afternoon but it might be the next morning.

I continued feeling badly Wednesday night. Thursday at 1pm, I still hadn't heard anything so I called back. She says, "Oh, he hasn't gotten to his messages from yesterday yet but he should get back to you today." I asked her if I could just come get seen. She said no, he would have him call me. So at 5:30pm, SHE calls me back - not the doctor. She says that he is going to call in pain medicine. I didn't need pain medicine - i have that. I wanted something to, ummm, you know actually make me feel better. I told her that I had 5 days if IV antibiotics and was feeling better, and that after 4 days of Augmenting, it was getting worse. She says, and I am seriously quoting her, "Umm, well I am not really sure how long it takes to get better from diverticulitis." Kind of scary that they have this person calling people from a GI office. I insisted on talking to the doctor because I really think the antibiotic isn't working.

He comes on and acts like he doesn't even know who I am. I reminder him that I just got out of the hospital and that I am on Augmentin. He asks me if there was a reason I am on that and not Flagyl. I told him that it made me very ill in the hospital. He asks if I want to try Cipro. I am really not feeling confident in his abilities at this point. I say yes. He calls it in. Hopefully, this will work, but I am definitely searching for a new GI doc.

I ask friends for a good recommendation for a GI doc in Tampa. The earliest appointment I could get was June 9th. Not sure I really want to wait 6 weeks so I will keep looking. Anyone else have recommendations of either a good GI doc?