Broken record?

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minou
Regular Member


Date Joined Jan 2005
Total Posts : 140
   Posted 7/26/2009 4:16 PM (GMT -7)   
Does anyone else ever feel like a broken record? I have an appointment with my GI tomorrow and I just don't know what to say anymore. I've had Crohn's for over 10 years, but the last 2 have been quite difficult. He's tried me on Asacol, Prednisone, Imuran and supplements like Iron and Fibre, and I've even had a resection, but none of it's made me feel that much better and I'm having a hard time keeping my chin up. I'm afraid I'm starting to sound like a broken record and that he's not going to listen anymore.

Any advice?

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/26/2009 11:21 PM (GMT -7)   
Hmmmm.

When I visit my specialists, I pre-prepare an A4 sheet of paper. On one side I list all my current meds, and on the other side I list my current symptoms, and any major concerns that I really want addressed at that appointment.

My docs are often fairly rushed and don't always hear what I tell them, so I find it's easier if I just write the information and hand it to them so they can review / refer to it later.

I also find it saves me from having to say the same things over and over again, as we can skip straight from symptoms (which they can review at a glance) to what I'm *really* having issues with.

Might that help?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


minou
Regular Member


Date Joined Jan 2005
Total Posts : 140
   Posted 7/26/2009 4:30 PM (GMT -7)   
That's a great idea, thanks! I'll try it.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/26/2009 4:45 PM (GMT -7)   
Glad to help, minou.

Please do let us know if that doesn't work, and we might be able to think of another strategy.

It really does take a lot of trial and error to communicate with doctors, and unfortunately we often need to try a different approach for each doc, because of their differing personalities.

I think it would be nice if they made more of an effort themselves, so the onus wasn't always on us to communicate effectively. We're sick, and don't always have the energy to express ourselves well.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 7/26/2009 9:11 PM (GMT -7)   
My doctor also takes his time with everyone. Between 1-2 hours.  There has been times that I have had to wait 3, 4 or even 5 hours after my appointment time to see him, but I feel that it is worth it.  I usually try to be his first patient of the day (hehe).  I always have someone go with me, because for some reason I seem to forget half the things he says by the end, usually my mom is with me so she remembers everything.  Write down everything you want to ask, or tell him...chances are you will forget a couple things if you dont.  If you feel like you are begining to sound like a broken record...tell him that.  Something needs to change to help you.  If it gets to the point where you feel like hes not listening to you, perhaphs look into finding a different GI.  My old GI actually referred me to my new one because he felt my condition was beyond him.  Now I have an amazing GI....and he actually HAS Crohns.  I can't tell you how amazing it feels to speak with a doctor who knows exactly what Im saying, and exactly how I feel.  Ask about Iron Infusions instead of supplements, your body probably isnt absorbing vitamins, ask for B12 injections, they are so simple...you can do them at home or every month at your PCP.  Sometimes those things can make a world of difference in how you feel.

Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Imuran 50mg, Vitamin B12 (injection), D, and C tablets. Fish Oil Tablets, Cats Claw, Slippery Elm, and Reishi.
 

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/26/2009 10:49 PM (GMT -7)   
Folks, I'm not sure if discussions of good / bad doctors are relevant here.

Minou has asked for advice on her particular situation: namely, how she can communicate with her doctor without sounding like a broken record. Let's keep this thread on-topic, ok?

Minou, another thing you can do is take a few symptom records to show him. There are a few that are commonly used, and have enough credibility to give your doctor a good, objective view of what exactly you're dealing with.

One commonly-used tool is the Crohn's Disease Activity Index (CDAI), and you can find guidelines on how to complete on in Wikipedia, or by Googling. There's also another tool that assesses quality of life: things like how often you've had to delay social engagements because of your gut problems, and so on. I can't remember the name of that one and haven't been able to find it online recently, so if anybody *does* have a copy, might they be able to post a link to it here?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 7/27/2009 11:09 AM (GMT -7)   
Minou....like Ivy, I take a list with me. It keeps the discussion on track for the big things and no need to discuss the things that don't really change. I give the doc one copy and I keep a copy in my hand so I can write down notes as he talks. I repeat back things that are important to make sure I understand what the doc said and make sure to stay focused on the more important issues.

I have been doing this the last year. Like you, have been going for many years and some things don't really change. I write those down first with - no change next to them. I only talk about the things that changed.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


minou
Regular Member


Date Joined Jan 2005
Total Posts : 140
   Posted 7/30/2009 7:39 PM (GMT -7)   
Sorry it's taken me so long to report back, but I have some great news! Well, depending on how you look at it I guess : ) I wrote down the prescriptions I'm taking, my symptoms and a couple of questions I wanted to ask and it worked!

We decided together that I should try Humira. He went over everything with me and I feel much more optimistic about my health. Who knows, maybe the Humira will work and I'll get my life back again! I can't believe the cost though... I was joking with my boyfriend, saying that by the time I feel well enough to go out with friends again, I won't have the money to do it lol

Thanks so much for the advice.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/30/2009 7:44 PM (GMT -7)   
That's fantastic, Minou. I'm really glad it worked. Here's to a long nremission with Humira!
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's

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