Remission and Symptoms Question

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thatfield
Veteran Member


Date Joined Jul 2008
Total Posts : 823
   Posted 9/18/2008 11:41 AM (GMT -6)   
Hi - I have only posted a few times but read everyone's posts several times a week.  I know that this has been discussed a little but I am realy uncertain about whether this is somewhat normal or not...  I have been on pred. for the first time over the last three months and am almost tappered off now.  Throughout the treatment I have had a HUGE decrease in all sypmtoms.  I have not had any bleeding or cramping for at least the last two months however, I have continued off an on to have some mucus and some diarrhea.  Sometimes I will go a day or two without it but then I will go a week or so with at least some everyday.  I am not sure if this is "normal" or if I should call my doctor.  He is always vauge when I ask him questions...  I do not want to stop the pred (and I am almost finished) if these sysmptoms are signs that I am not really in remission...Any suggestions or thoughts?

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 9/18/2008 11:57 AM (GMT -6)   
I suppose I never reach normal but am content (thrilled!) if I have no urgency. Seems like you still have some symptoms, maybe try the fiber suggestions at this point? Spinach, metamucil catch my attention. I think the spinach helped me, I didn't try the metamucil because the wafers have gluten. When I hear about episodes like you describe, I have to wonder if it is triggered by food you are sensitive to, or fiber issues.
The prednisone is a bit trial and error. If you go off and your symptoms increase, then you might be one who still needs a small dose, 5 mg or less, for a while.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering OFF prednisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
Sept: Mild case of thrush in throat, prescribed antifungal mouthwash.


thatfield
Veteran Member


Date Joined Jul 2008
Total Posts : 823
   Posted 9/18/2008 12:31 PM (GMT -6)   
Peety, I will try the fiber for sure. I agree, I am so happy not to have bleeding or urgency that this seems minimal. I am pretty newly diagnosed - 2006 - and had terrible long uncontralable flare with a lot of bleeding for about 8 months so I think I am super scared about any symptoms! Do you take fiber pills???

UMDTerp2001
Regular Member


Date Joined Sep 2006
Total Posts : 246
   Posted 9/18/2008 12:57 PM (GMT -6)   
One thing i did when i was coming off of a long flare and weaning off of prednisone was to wean really slowly to stretch out its effect for a few more months.  i did something like once i got to 10 i stayed there for a few weeks, then down to 7.5 for a few weeks, then 5 then 2.5, all this stretched out about an additional 2 months to feel like i was giving my guts more time to heal from a year long off and on flare.  i suffered from really bad arthritis and used a small amount of skull  prednisone skull to help...  it' an amazing drug, sucks it's toxic!  too bad they can't make a drug that does the same thing but doesnt have such bad side effects!

 
 
__________________________________________________________________________________
- 30 y/o male residing in Northern Virginia living a fairly "normal" life at the moment
- Currently in remission
- Pancolitis since April, 2006
- Small fistula and anemic at times 
- 4 Colazal/day, multivitamin, Fish oil and Primal Defense Probiotics 2x/day
 
 


mh53mike
Regular Member


Date Joined Aug 2008
Total Posts : 149
   Posted 9/18/2008 1:11 PM (GMT -6)   
If your at the end of your taper things arent going to get any better than they are now, in fact it may just slowly get worse and you enter another flare really...

I am in the best remission i ever have been in since diagnosed with this disease. In the past all my other remission times still consisted of atleast 3 bowel movements a day and not really all that formed. Now i have one a day and its solid! With no blood to boot! I dont really have any urgency either which is awsome.
26y old male medically disharged USAF veteran.Diagnosed with UC (lower proctitis) in 2004.
 
Current daily treatment:                               Probiotics & supplements:
1000mg sup asacol                                      50 Billion CFU's acidopholis daily
2400mg oral asacol                                      Digestive enzymes before each meal
30mg prednisone tapering                             5grams of glutamine
75mg azathioprine                                       folic acid & calcuim with V-D
20mg Nexum                                               Whey protien  
 
Diet:Little/no sugars, fats, carbs, caffine. Stay natural as possible.  
 
Results:1 Bowel movement in the morning no blood!


thatfield
Veteran Member


Date Joined Jul 2008
Total Posts : 823
   Posted 9/19/2008 8:33 AM (GMT -6)   
Thanks for the insights.  Sometimes it is hard to know what is normal because since I was dx about two years ago nothing has seemed normal to me...  I am on Lialda too and decided last night to start taking my Canasa again as I am tappering.  I have not been taking it since I started the pred.  Maybe as I tapper off the pred I will have to start taking the Canasa every night again to help keep things calm.  My doctor really wants me to get to the point where all I need is 2 Lialda daily...actually he really would like to get me to the point that I don't need anything but I don't see how that could be possible.  My last flare was so bad and lasted a LONG time.  I think he waited way too long to put me on pred.  Next time I will ask for it right away!  This is just a learning process for me.
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