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feel like my dr. 's not hearing me

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Posted 1/19/2011 8:13 PM (GMT 0)
I had a major flare this summer and was put on IV steroids and then oral...still had symptoms so a new to me GI did a scope in September (while I was on 60mg of prednisone) and it showed mild inflammation in rectum and lower large bowel. Now I am off prednisone and WILL NOT take it again but still feel bad. Many bm's a day, lots of cramping, mucus and blood but my crp and sed rate are normal. So my Dr. added domperidone and some salofalk suppositories and said I should be fine. I'll give it a few weeks but I still feel a lot of pain. I started a journal of symptoms to bring to the next appt...not sure what else to do?
Posted 1/19/2011 9:42 PM (GMT 0)
Do you HAVE to wait? If you are in pain you should get some relief. If what you are taking isn't working you need to get something that will work. I've never had much pain but I was in denial for a long time about how bad my symptoms were. Admitting that you have these symptoms and being very plain to your doctor that what you are taking isn't working for you is the first very important step to take.

Having said that however it is important for you to have an idea of what that next step will be and how you feel about it. Asacol med types? Sulfasalazine med types? Remicade? Humira? 6mp (Imuran)? Surgery?
That way you are not just being "treated"but you are a fully informed partner in your health.

I don't know what you should do next but this forum has lots of people taking various meds and reporting how they react. Some are happy with the ones mentioned, some are not.

BTW "mild" inflammation is what I had years ago and the symptoms were very bad. The rectum gives bad symptoms even when inflammation looks mild to the doc. They only know what they see, they don't live with the reality or they'd never use the word "mild".
Posted 1/19/2011 10:26 PM (GMT 0)
Do you really only take one asacol three times a day? Not four pills three times a day.
Although that won't solve this flare if it is that low.

I hope the suppositories start to work. If you can't tolerate prednisone but you need more than a topical, you might want to consider the stronger treatments, I agree.
Posted 1/20/2011 1:01 PM (GMT 0)
I take 4 asacol 3x a day well more like 6 in am and 6 in pm I find that easier to remember...I think I should give the suppositories time to work befor I jump on to different treatments. Thanks with the blood work looking good and the Dr's saying my colon didn't look too bad I start to feel like I'm just complaining or something...
Posted 1/20/2011 2:09 PM (GMT 0)

super8:

I agree you should give it more time to see if the rectal meds work and help you for the long run.  But please don't buy that guilt trip stuff.  I was told by my GI doc of eight years that my UC was mild and that he's seen a lot worse.  During those years I bled a lot, cramped a lot, had numerous accidents.  All the while he kept telling me my case was mild.  I bought it and I trusted him.  Looking back I shouldn't have and I should have taken a more pro-active role in my own treatment.  I ask you to do the same. 

Be patient but not too patient.  If you feel like your Dr. is not hearing you move on.  My current GI doc listens well.  He doesn't always agree with me.  My point is that it's ok for the doc to completely disagree and still be actively listening.  I do that all day as a busy dentist. 

I hope you feel better.

MyUC

Posted 1/20/2011 2:53 PM (GMT 0)
I think you're right but as a lab tech I guess I'd like something to back up my claims. I'm hoping journalling the symptoms will help me feel like I have something to show.
Posted 1/20/2011 3:02 PM (GMT 0)

super8:

I get what your saying and I can respect that.  All I am trying to say is that there is an aspect of the doc/patient relationship that cannot be based on factual data.  That aspect is based on trust, a gut feeling.  Knowing that you are being really listened to.   I used to get my blood work done, my sed rate and C-reactive protien never spiked and was always normal.  Yet my colitis was turing my colon into meatloaf.  It was only when I really scrutinized my colonoscopies and biopsies and pictures of the inside of my colon that I got the real story.  When I showed the data to the new GI doc he was like, "Does that look mild to you?"  I got his point right away.  My diet has nothing to do with my colitis although it does for others.  All I am trying to say is that I hear you and my advice is to still be patient for a while but just be pro-active, don't settle.  Good luck.

MyUC

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