Communicating with my Doctor – How Important

I haven’t been around for a while because once again, illness snuck up on me and knocked me for a loop.

One major thing I have learned through this flare is the importance of communicating with my doctor about my crohn’s disease. It’s so easy to “forget” something during a 15 minute appointment… and forgetting can be costly to MY health, as well as time consuming. If I don’t get things worked out with my doctor, I could end up in the emergency room, costing me (and my family) hours, or days, rather than an hour, round-trip visit with my doctor. I came up with a solution, see at end of post (I hope it works well), but here’s a recap of my past couple months.

In early November 08, I switched doctors, a whole new practice even. I have been struggling with feeling like the doctors I’ve seen thus far don’t seem to really pay attention to what I am saying. It feels to me as if they have their own guidelines and if my symptoms don’t fit within that range, whatever I am feeling must not be crohn’s.

Now, I’m certainly viewing this from my side only… I don’t even feel like being sensitive to the doctors and trying to see things their way… so no like me typically, but I am the one who is sick, no only do I suffer physically and mentally (emotionally), but so does my family suffer with me.

I wish I could be the type of person who will not let crohn’s disease get them down, who pushes through it and won’t let crohn’s control them. However, my crohn’s disease came out of no where when I was 37 and after being relatively healthy all my life, it’s really been a depressing situation for me. It’s my hope that once I have things somewhat under control, I’ll find a way to cope better. So far, I haven’t gotten there yet.

My biggest issue now is getting doctor, a GI specialist, to actually listen to me..

I had a colonoscopy the week before Christmas. Mostly to let the new doctor get a decent grip on where things stood with my health. When the colonoscopy was over, he told both myself and my husband he could see scarring as well as an active Crohn’s flare. However, at the time, he didn’t prescribe anything else to my daily intake of medications.

So, two weeks later when I was in huge pain, I called asking for him to just call in a prescription for antibiotics and/or steriod… I knew I was going to need something other than Asacol or Imuran. The pain was bad enough I was almost (but not quite) ready for the ER just to gain some relief from the pain.

The doctor wanted to see me, so in I trudged, through tears and the pain of sitting to drive – the pain was behind my tail bone and sitting to drive was nauseating. He asked if I was having diarrhea, to which I said no, but I was having other issues… but that was pushed to the wayside and after he took a feel of my tail bone, declared whatever was going on probably wasn’t related to my crohn’s.

I explained how the last time I had pain there, up a little higher, it was actually the abscess giving me grief… he asked if I thought my pain was related to an abscess and said he’d have me get a CT scan (and got one that day)… however, he never discussed the colonoscopy, the flare he knew I was experiencing, never a word on adjusting medications, coping with the pain. Told me to keep my appointment scheduled in the next two weeks, told me he was sorry I was feeling crummy and he’d see me in a few weeks.

I left, sat in my car and sobbed. It wasn’t until I was in the car that I realized how quickly the appointment buzzed by with nothing being done to actually help with the exception of the CT scan.

The next day, I went to my family doctor, who proceeded to get the results of the CT scan, prescribe antibiotics and a steriod because of the obvious swelling, as well as a small abscess (not so great)… and gave me more pain meds. Thank goodness for my family doctors having so much belief and patience in listening to me.

But because I had such a rough time of it, and realized then how very important being able to really communicate with my doctor about my crohn’s disease I decided to create a simple form listing my medications, symptoms, pain issues, etc so I could give him a copy at each appointment. This will hopefully prevent the times when things get away from either of us and symptoms or issues get left unsaid, thus untreated.

Here is my Communication form to print when I see my doctor. Maybe it will be helpful for you too. I plan to create a basic, generic form too. I am also going to start requesting copies of all my tests and creating a “portfolio”.. sometimes it’s too hard to remember tests, results and times.. I think getting my health organized will help me get a good handle on it.

Communication with my Doctor – it’s a simple .pdf printable form to take with you.. keep one for your records and give one to your doctor.

* Communications Form
* Basic Communications Form

Tagged as: colonoscopy, crohns disease, depressing situation, doctor communication form, emergency room, gi specialist, health portfolio, printable form