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GI doesn't want me to take any meds - so confused!

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Ulcerative Colitis
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Posted 5/28/2013 8:38 PM (GMT 0)
Have been flaring almost nonstop since January. Got some temporary relief from cortenemas but those are losing effectiveness. Went to the GI, he was going to start me on sulfasalazine or Imuran, and he ran some tests including fecal leukocytes, which came back negative. He says this means I don't have any inflammation and I should just take some immodium.

WHAT?????

I'm only going 1-2x most days, but I have mucus and tenesmus, and loud colon rumbles. Those are my flare symptoms.

Does this make sense to anyone else? I told the nurse I wasn't satisfied with the dr's plan, and that my symptoms don't jive with what he's saying, she is supposed to call me back later, but I am just dumbfounded right now.

Posted 5/28/2013 8:50 PM (GMT 0)
Hmmmm. I am having probs with my doc right now, too. I requested some pred because of the severe bleeding despite being on Asacol/Rowasa, he refused and just told me to take more of the mesalamines. I don't get it...

Called a few hours ago to get the results of the battery of lab tests I had to submit to last week, and no response.
Posted 5/28/2013 8:53 PM (GMT 0)
I know it's a pain to change dr.'s but if you are not satisfied with what you are being told then it may be time for a change. I went thru 3 GI docs before I found someone I trusted and who helped me.
Posted 5/28/2013 10:34 PM (GMT 0)
Hi Mama2girls,

I am disgusted that there are doctors who would actualily be this ignorant but believe me it happens. The positive in this is you know your illness and that you need to be treated. I would request a referrall to another GI (just go to ur GP) and dont ask tell them, DEMAND. I learned the hard way that i needed to call the shots with this illness in re to medical practitioners and specialists. The more you learn about UC and how it effects you the easier it is to be firm and open when speaking with GI's / DOC's. The worst thing is to go off meds even while in remission and your symptom free. I lost my wonderful GI when i moved home due to needing family support and loss of career to UC and it took a long time for anyone to listen to me, i felt rushed out and like i was just another number. I soon changed that with the way i conducted myself. I really feel for you and hope it all works out.
Posted 5/28/2013 10:41 PM (GMT 0)
It sounds to me you are flaring. A second opinion never hurts. Sometimes blood work doesn't show inflammation when you actually have it.
Posted 5/29/2013 12:49 AM (GMT 0)
When was your last scope? I would think he would want to do a sigmoioscopy to see whether you're inflamed.
Posted 5/29/2013 1:35 AM (GMT 0)
sounds like he thinks IBS instead of IBD. did you have a scope?
Posted 5/29/2013 1:41 AM (GMT 0)
You should definitely get a scope, and another opinion.  I changed GI's about 2 years ago because I kept having similar sypmtoms, had a colonoscopy with the new GI and was in remission at the time. I think it was the IBS, not the UC, but wanted to really find out what caused those symptoms and what I could do. My colonoscopy showed as though my colon was almost normal and my blood tests negative. So this 'new' GI (who was a resident) told me to stop all my maintenance meds and told me I did not have UC. And now two years later I am still trying to get over my first real flare in 10 years.

I had a feeling I should get another opinion when he told me that but I didn't. I wish I would have as I'm sure I wouldn't be in this situation if I had trusted my inutuition that something was not right with him. I don't go to him anymore, by the way.

You can have a flare up without bleeding, but what I've found is its either usually IBS or my UC getting a little 'active'. Meds always settled it down for me though. Prilosec seems to take away my colon rumbles (something I discovered completely on my own but my new GI agrees with).

Posted 5/29/2013 2:11 AM (GMT 0)
1-2 times a day? I would kill for that..but by all means, if you are not happy, keep shopping!
Posted 5/29/2013 3:04 AM (GMT 0)
Mama2

When was your last colonoscopy? That is the standard for establishing inflammation not blood tests. If you have been diagnosed previously with UC and you currently have UC symptoms then you should be taking meds for it. End of story.

What meds were you taking besides cortenema?
It's hard to understand why your GI changed his mind about Rx'ing meds if you had been taking them previously.
Posted 5/29/2013 7:44 PM (GMT 0)
Yes he is thinking this is IBS, and I could see IBS causing mucus and an extra BM, but the tenesmus seems like a UC thing.

I am not on any maintenance meds other than my supplements, as we have not yet found one that agrees with me/helps me.

That was the reason for the appointment, I want to find a good maintenance med. I have fought the idea for almost 2 years, and how ironic that when I finally surrender to the idea of taking stronger RX meds, I can't get the doctor to prescribe any!

My last colonoscopy was when I was diagnosed in Aug 2011. He offered to do a flex-sig, but cost is a factor for me, and he said the stool test could be done instead to test for inflammation. I would be willing to undergo the procedure but if the stool test was negative, is the flexsig going to tell us anything different? I don't want to waste my time and money.

I only have 10 days of cortenemas left, and am afraid I'm gonna be in bad shape when they run out if we don't get some other kind of treatment going.
Posted 5/29/2013 9:11 PM (GMT 0)
I would question his choice of stool test. There is a test for fecal calprotectin that is about 98% reliable in terms of predicting inflammation in the colon, but it is pricey. I doubt that is the test he requested. I do not know if fecal leukocytes are equally reliable in diagnosing inflammation in the colon.

http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/8046
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