Do you think I'm in remission?/advise

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legalsec
Regular Member


Date Joined Feb 2007
Total Posts : 30
   Posted 10/24/2007 9:36 PM (GMT -7)   
Hello All,
 
I have been symptom free since April 2007 (I think). The only symptom that I seem to have is my regular bm's EVERY morning (2-3 times), and while driving to work each morning I feel the urge to go to the restroom and am terrified I won't make it. Many times I must stop at McDonalds on my way to work (they have the cleanest restrooms).
 
I last saw my GI in June. He wants to see me back in 6 months for followup. He did mention if I am still symtom free and if my labs all come back okay, he may go down on my Colazal dose.   I'm kind of hesitant to go down on my Colazal dose, I'm scare of going into a flare if I take less.  But, on the other hand, if I stay on the full dose (9/day) and I do have a flare, then my only option would be to go back on the dreaded "prednisone". 
 
Do you feel I should stay on my same dose or go down if no symptoms for 6 months? Do you think I am considered in remission and these bm's every morning is just going to be my new way of life? If I would take some type of Probiotic would that help with my morning urges? or any other type of OTC meds?
 
Your advise is greatly appreciated. I don't know what I would do without all the info. i get from the UC boards. You all are a blessing. I am always reading the posts. I can't seem to get enough input. I think I'm addicted.
 
Thanks to you all!!
 
Vonda

Pancolitis - dx December 2006

 

Colazal - 750 mg   9/day

Women's One-A-Day Multi-Vitamin

Calcium +D 500mg - 3x/day

Coumadin 4mg/day (for DVT, dx 2/13/07)

Seasonale (birth control)

cranberry pill - 300 mg  3x/day (urinary tract infec.)

Lovenox injec. 2x/day (for DVT)

Prednisone - 10 mg/day

Folic Acid - 400 mcg x2/day


quincy
Elite Member


Date Joined May 2003
Total Posts : 29852
   Posted 10/24/2007 11:56 PM (GMT -7)   
Hi Vonda..welcome to the forum!

If you're having such urges and go more than once in the morning, I'd say you still have some inflammation limited to the lower rectum. Are your bms formed or diarrhea?

You don't have to go on pred if you don't want to. I would suggest, however, you get your doc to prescribe a rectal retention enema such as Rowasa or if you're not in the US..Salofalk. That should help with the urges and reduce the inflammation in the rectum.

The other option is Cortifoam or colocort...steroid based enema.

Both are to be used nightly until you're "normal" then start to taper.

Consider that UC starts at the rectum and continues upward. It heals backwards and the rectum is always the area to have the most inflammation and will heal last. So, it's common sense to have a rectal med for treatment (in conjunction with the oral Colazal that you're on) and then tapered to a maintenance dosage.

I think that if your doctor tells you to lower the Colazal..make sure you do it one pill a week...or even one every two weeks. But DO start the rectal med at the same time.

My first suggestion would be for the 5ASA meds...and if they're not for you, then switch to the steroid. I'm not meaning prednisone here...the ones I'm suggesting are topical (although a very very small amount will be absorbed through the colon). Many have success with both..you just have to find what works best for you.

I forgot to add that you should definitely be on a probiotic. As well, a fibre supplement will help bulk the stool and help you a bit more control.

Hope this helps. Please consider the rectal meds.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~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 !!!


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 10/25/2007 8:37 AM (GMT -7)   
Remission from UC means rarely any urgency + 1 bm daily most of the time. It sounds like you're not quite there yet. It's possible that you still have some inflammation in the rectum, in which case Rowasa (mesalamine) retention enemas could help you-- as a supplement to the Colazal. It seems that the recommended daily dose of Colazal has been lowered to 6 capsules (from 9) as a result of conclusions from Phase 2 NIH clinical trials in U.S. My own gastroenterologist advised me to take 6 daily for a recent flare in descending colon. However, there are members writing to this site who take higher doses of Colazal for extended periods of time & seem to do well on that regimen. You really should keep in touch with your gastroenterologist & possibly go for an exam follow-up sooner than in 6 months with the situation you describe. Even during remission most IBD gastros want to see their patients at 3-4 month intervals-- to check bloods/urinalysis as monitors of meds being taken. / Old Hat (nearly 30 yrs with left-sided UC; currently taking 3 Colazal daily; seem to be back in remission)

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 10/25/2007 4:08 PM (GMT -7)   
I agree, the urgency tells me you're not in full remission. Old Hat, I still go 3-4 times daily, even though my recent c-scope showed no ulcers, no bleeding, no inflammation at all. I think for some of us it just changes what's "normal" for us.
Judy
 
Left-sided UC diagnosed 2001.  Taking Colazal and Imuran, Remicade infusions and moving into remission. Finally off steroids after four years! 
 
Now in remission for almost two years. Remicade has been my wonder drug.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 10/25/2007 4:45 PM (GMT -7)   
I'd agree you're not there yet. I'd take it day by day. Maybe try vit e enemas? They seem to do more than any other drugs I've gotten, though this time even they didn't "cure" me.
dx late April 2005 with pancolitis UC after birth of my son (second child)... meds didn't work (or rather they would work and then randomly stop)
Started SCD and vit e enemas 12/9/05...that and meds = remission 12/11/05, off meds 12/20 (were on the way out before that), stopped continuous enemas 3/23 and use them only when I feel a flare coming on. 
Beautiful perfect baby boy born with no drugs and only vit e enemas during pg - 10/14/07
He also had no gas or discomfort while nursing from me being on the diet.
Didn't use the enemas last flare since I was nursing and regretting it now, wasted time in the hospital with drugs that did nothing but ravish my body, now on my own and almost better... vit e, weaning pred, licorice
 


legalsec
Regular Member


Date Joined Feb 2007
Total Posts : 30
   Posted 10/25/2007 6:59 PM (GMT -7)   

Thanks Guys!!

When I was first diagnosed in 12/06 I was very very ill. 15-20 bms/day with lots of bleeding and lots of pain.

My GI first started me on Asacol and mesalamine suppositories. But I had a very bad reaction to the Asacol and I could not hold in the mesalamine suppositories for more than 15 - 20 minutes. After one very bad week, much more sick than I was before my scope, my doc decided to take me off the Asacol and put me on prednisone. I started the prednisone at 60 mg and tapered down 10 mg every week. It sure was a miracle drug for me. By the time I was completely off the pred I was all better, and since then had considered myself in remission, except for my morning urges. I can eat anything and drink anything. No pain or anything. All my labs in June showed that I was all well. This is why my docs said I could wait til January to see him again. I was instructed to call before if any new symptoms arise. I feel the same as I did in June, therefore I was waiting to see him in January.

I still have lots of the mesalamine suppositories left. I'm wondering since I am not severely ill anymore, maybe I will be able to tolerate the enemas now.  Should I consult with my GI before trying this again. Do you think I will have a reaction to the enemas as I did to the Asacol? Aren't they both mesalamine?

Thanks again,

Vonda


Pancolitis - dx December 2006

 

Colazal - 750 mg   9/day

Women's One-A-Day Multi-Vitamin

Calcium +D 500mg - 3x/day

Coumadin 4mg/day (for DVT, dx 2/13/07)

Seasonale (birth control)

cranberry pill - 300 mg  3x/day (urinary tract infec.)

Lovenox injec. 2x/day (for DVT)

Prednisone - 10 mg/day

Folic Acid - 400 mcg x2/day


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 10/26/2007 9:30 AM (GMT -7)   
Since you also take Coumadin for DVT it's likely best if you consult your gastro before adding other UC meds. Also, since you do take a full daily dose of Colazal, I would imagine you might benefit from an occasional mesalamine enema supplement-- maybe once a week for a few times to see if it rids you of urgency-- not any frequent application because the 5-ASA enemas tend to liquify bms. Then, too, mesalamine enemas contain sufites as a preservative so you may want to beware of that if you have known sensitivities. Another possibility for reducing urgency is to beware of caffeine consumption-- it can overstimulate the colon. You might do better having decaf coffee or tea before your morning commute if you've been drinking regular. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
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