*sigh* I get so frustrated when I hear about
doctors throwing clinical language at their patients without even taking the time to explain things properly.
It sounds to me as if the doctors are still trying to work out exactly what's going on with you, hence all these extra scopes and scans. A colonoscopy looks at the lower part of the bowel, an endoscopy looks at the beginning of the GI tract, and the SB follow-through can help doctors see what's going on in the middle part, where scopes can't reach
It sounds, too, as if they are still trying to work out an appropriate medication regime. Don't despair: you have a lot of medical options yet, and some people find that some of the older biologics like Infliximab (Remicade) and Adalimumab (Humira) are more effective than Cimzia.
In terms of working out how severe your Crohn's is, I recommend starting a Crohn's Disease Activity Index diary. It sounds as if you haven't been asked to do one yet, so here is what to do:
Each day, make a record of:
* the number of liquid, loose, or very soft bowel motions you've had.
* the intensity of your abdominal pain (rated 0 for no pain, 1 for mild pain, 2 for moderate and 3 for severe)
* how you feel overall (0 = completely well; 1 = slightly under par; 2 + 3 are progressively worse; 4 = terrible)
* whether you had to take opiates or Immodium for diarrhoea
* whether you have had a temperature over 37.8C
Your doctor should be able to complete the rest of the questions, and this can give him a good indication of how you're feeling.
You might also like to keep a pain diary. You can find these online, and once again this should give the doc a good indication that your current medications are NOT helping you enough.
I can appreciate the difficulties you're experiencing in communicating with your doctor. I find it helps to prepare an A4 sheet of paper before each appointment. On one side I list all my current medications, and I use a highlighter to mark any script
s that I need, so that the doc can see this at a glance and has no excuse for forgetting to give them to me! On the other side, I write a list of the things that are bothering me most at the moment - this might be abdo pain or nausea or joint pain or uncontrollable diarrhoea or whatever - and another list of the things I'd like advice on - e.g. how to control leakage from a fistula; how to better manage pain; things like that. I also find it helps to write down any life issues that might be exacerbating my symptoms (e.g. grief, extra stress from family problems, lack of support from friends / family, whatever).
I find that it is easier to write all these things down, because then he can see at a glance what is happening with me, without worrying about
whether he's had time to discuss all my issues at the appointment. I feel that it is important to do this, so that we are both protected should anything go wrong, and so that my doc can chart my symptoms over time.
This is getting over-long , but I hope these ideas have helped. Welcome to the forums, and please do keep talking to us -- it's lovely to meet you.
Co-Moderator Crohn's Forum. Medications for Crohn's
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