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

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Discouraged
Regular Member


Date Joined Mar 2007
Total Posts : 54
   Posted 4/29/2008 5:36 AM (GMT -6)   
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. 

expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 4/29/2008 5:46 AM (GMT -6)   
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.
Proud new mom of a beautiful baby boy!
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)


Discouraged
Regular Member


Date Joined Mar 2007
Total Posts : 54
   Posted 4/29/2008 5:54 AM (GMT -6)   
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.
Diagnosed with UC (proctosigmoiditis) April 2006
Asacol 1200 mg (3 pills) 3 times a day
Canasa suppositories 1000mg at bedtime
Currently in a flare and taking Prednisone 30 mg per day to taper to zero in about 9 weeks *just had dosage increased to 40 mg because I am not responding* Back down to 30 mg and doing okay..so far
Aciphex
Colazal
Rowasa
Bentyl when needed
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/29/2008 6:47 AM (GMT -6)   
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.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 4/29/2008 6:48 AM (GMT -6)   
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.
diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 4/29/2008 7:19 AM (GMT -6)   
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.
 
 
Dx:  UC Proctitis 2006
 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence.
 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering.
 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 
Added: tumeric and probiotics.
 
 


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 4/29/2008 7:29 AM (GMT -6)   
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.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 5mg pred, 150mg Imuran
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
Remicade started 3/1/08...just had 3rd infusion


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 4/29/2008 8:16 AM (GMT -6)   
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.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08, Flagyl 750 mgs started 4/2/08, Humira started 4/4/08


quincy
Elite Member


Date Joined May 2003
Total Posts : 30389
   Posted 4/29/2008 9:06 AM (GMT -6)   
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
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Discouraged
Regular Member


Date Joined Mar 2007
Total Posts : 54
   Posted 4/29/2008 9:49 AM (GMT -6)   
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.
Diagnosed with UC (proctosigmoiditis) April 2006
Asacol 1200 mg (3 pills) 3 times a day
Canasa suppositories 1000mg at bedtime
Currently in a flare and taking Prednisone 30 mg per day to taper to zero in about 9 weeks *just had dosage increased to 40 mg because I am not responding* Back down to 30 mg and doing okay..so far
Aciphex
Colazal
Rowasa
Bentyl when needed
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30389
   Posted 4/29/2008 3:51 PM (GMT -6)   
Keep us posted. How long have you been on the Rowasa?

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Discouraged
Regular Member


Date Joined Mar 2007
Total Posts : 54
   Posted 5/1/2008 4:51 AM (GMT -6)   
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.
Diagnosed with UC (proctosigmoiditis) April 2006
Asacol 1200 mg (3 pills) 3 times a day
Canasa suppositories 1000mg at bedtime
Currently in a flare and taking Prednisone 30 mg per day to taper to zero in about 9 weeks *just had dosage increased to 40 mg because I am not responding* Back down to 30 mg and doing okay..so far
Aciphex
Colazal
Rowasa
Bentyl when needed
 


Mackster
Veteran Member


Date Joined May 2007
Total Posts : 768
   Posted 5/1/2008 10:33 AM (GMT -6)   

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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