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Doctor says I am in remission??? Opinions..

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Ulcerative Colitis
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Posted 4/29/2008 11:36 AM (GMT 0)
Hi!  I would appreciate some opinions on this.  I am so confused! I had my yearly colonoscopy yesterday.  The doctor comes out (when I'm half asleep) and says that I am in remission.  He says I won't need another colonoscopy for 5 years and I can follow up with my family doctor until then.  Here is the problem with that....why don't I feel like I am in remission??  I still have approximately 4 -6 very loose bowels movements every morning, preventing me from being able to leave my house until at least 10:00 AM (I wake up at 6:00).  Some days, that will be it for the day and some days it will start all over again in the evening with numerous trips to the bathroom.  Some days I manage to leave the house and can't make it where I'm going (if you know what I mean).  Although this is an improvement from one year ago, I simply don't see how this is remission. He gave me a report saying that colitis was found in the sigmoid colon.  It was diffuse, involving rectum and sigmoid, with mild edema but no ulceration at this time. Diagnosis being - Distal ulcerative colitis in remission. 

I guess I always thought remission meant symptom free. 

Posted 4/29/2008 11:46 AM (GMT 0)
Remission may mean something different for everyone, but in my opinion, remission does mean symptom-free. I have never had any symptoms while in remission.

I find three things rather interesting/disconcerting about your Doctor's comments:

(1) Edema = Swelling/Inflammation. If he found edema, he found inflammation. How can you have inflammation and be in remission? The inflammation is likely what is causing your symptoms. Just because no ulcers are present does not mean that you are in remission. The inflammation has to be gone as well.

(2) He told you that you won't need another colonoscopy for 5 years. My GI has always advised a scope every 4 years if you have had UC for less than 10 years. When you hit the 10 year mark, he advises a scope every year in order to keep an eye out for dysplasia. I'm not sure how long you have had UC, but I find 5 years to be too long between scopes regardless.

(3) He told you to follow up with your family Dr. I am shocked that a GI would not want to see you for maintenance visits. My GI sees me every 6 months... whether in remission or flare. I don't like that this Dr. just pawned you off an a family Dr. that likely does not have the requisite depth of knowledge about UC.

How do you feel about getting a second opinion from a different GI? If it were me, would be inclined to do so. I think you are right to question his diagnosis.
Posted 4/29/2008 11:54 AM (GMT 0)
I was diagnosed 2 years ago.

I have considered a second opinion, but there is only one GI in my insurance network. I personally think that I should have a choice and am considering fighting the insurance company to see a doctor that is out of the network.

Thank you for your opinion.
Posted 4/29/2008 12:47 PM (GMT 0)
If you have inflammation, you are not in remission. You have mild proctosigmoiditis at this point. Why are you no longer on rectal medications? They're the most effective for proctosigmoiditis, and can help clear up that residual inflammation. Either this GI knows little about UC or you belong to one of those HMO's that essentially (as a doctor friend of mine once said) pays its doctors for not treating you.

Look into the appeal process with your insurance. Sometimes only the squeaky wheel gets attention, so make a lot of noise. Ask your family doctor for help. Good luck, because you really need a different doctor.
Posted 4/29/2008 12:48 PM (GMT 0)
I agree with expecting 226. on all accounts. I see my GI every six months no matter what, and more if I am having problems. My scopes have been every 3 years and are now every year, and sometimes sooner if I am in a flare. My primary care physician, although wonderful, would never treat me for my disease. He will run all the blood work to rule out anything else, but he refers me right back to my GI if everything else is ruled out. You definately need to see someone else....and I would definately NOT call what you are experiencing remission. Sorry you are having trouble and even mroe sorry you can't seem to get the help you need. My heart goes out to you.
Posted 4/29/2008 1:19 PM (GMT 0)
I agree with expecting226, if there is inflammation then you are flaring and not in remission. To me remission means all symptoms are no longer present, but maybe it is when there is a significant reduction of symptoms for a period of time.
Posted 4/29/2008 1:29 PM (GMT 0)
I agree with everyone else. I don't consider where you are remission. I would seek a second opinion or call your GI and request rectals again. As for scopes. Every five years is what i was told when i was dx'd unless i was having problems before that time. Now after ten years with this DD I am suppose to go every 2-3 years when in remission becuase of the increased risk of cancer.
Posted 4/29/2008 2:16 PM (GMT 0)
I agree with all the others. Your doctor sounds careless and you could go from bad to worse quickly. I would look for a new doctor.
Posted 4/29/2008 3:06 PM (GMT 0)
Hi...remission may mean no "active" disease to your doc...but still have some visible inflammation.

We all have somewhat different symptoms when things are on the line, so to say.

Are you at least on some rectal and oral 5ASA meds?

How many biopsies did he take?

I'd actually make an appointment with the doc for when the results come in and ask for a copy of it plus ask the pertinent questions.

quincy
Posted 4/29/2008 3:49 PM (GMT 0)
I am on rectal medication. I use Rowasa nightly. I also take 9 Colazal a day. I am not sure how many biopsies he took, but he is supposed to call me with the results. Thank you all for your opinions. I am on a mission to find another doctor.
Posted 4/29/2008 9:51 PM (GMT 0)
Keep us posted. How long have you been on the Rowasa?

q
Posted 5/1/2008 10:51 AM (GMT 0)
I have been on Rowasa for about 6 months. I am in the process of an appeal with the insurance company. We will see how it goes.
Posted 5/1/2008 4:33 PM (GMT 0)

It's a bit sad when you have to 'appeal' to a medical insurance company.  All because you want a second opinon as they want to decrease treatment, almost 'closing the book' on your case.

'Medicine for profit' rears its ugly head once again in America.

Your choice of name would appear to make sense but keep on fighting them anyway.

Hopefully a future government will start listening to the people instead of the lobbyests.

Don't be discouraged Discouraged!

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