Increased Sense of Urgency - Need help!

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Blue5
Regular Member


Date Joined Jul 2008
Total Posts : 20
   Posted 6/30/2009 10:38 AM (GMT -6)   
 
All,
I need some advice on how to help with the sense of urgency.  This last week it has gotten really bad and I am not sure what to do to help the situation.  I have a 45 mins commute to work and by the time I get to work I am running, so far I have been VERY lucky to make it to the bathroom in time, but I am afraid my luck is going to run out soon.  I know I am in a flare and have been since pretty much Nov 09.  I have finally made the decision to go on Remicade but my first appt is not until July 21st.  I don’t want to take any prednisone at all because I have already developed osteoporosis due to the steroid use.  I don’t want to take more pred and make my bones any more vulnerable then they already are.  Can you guys offer any advice to get me from now until July 21st?  Sadly I am thinking my only option would actually be to wear depends in case of emergency, but I would rather not…any advice would be greatly appreciated.  I am already following a dairy free, wheat free diet, not sure what else to do.
 
Thanks,
 
Blue5 – 30 years old
Diagnosed in Sept 07 with Pancolitis
Lialda
VSL#3
Multi-vitamin and calcium pills

LuckyLindy
Regular Member


Date Joined Feb 2009
Total Posts : 226
   Posted 6/30/2009 11:10 AM (GMT -6)   
Have you tried taking Pepto Bismol? Immodium can (rarely) be dangerous for UC sufferers, but Pepto generally is risk free. When needed, I would take a tablespoon worth 4X per day. Walmart's Equate brand is REALLY cheap. Note that you will have dark stools, and possibly even a black tongue (particularly with the pills), both of which are normal and harmless.

If you have concerns, try calling your GI and see if (s)he has any issue with Pepto.

NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 6/30/2009 11:30 AM (GMT -6)   
Cut out ALL sugars from your diet...no cookies, sodas, cakes, ice cream...you should see improvement after a few days "if" it indeed works for you.

good luck,

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Mesaamaline (sp) Retention Enemas, herbal meds in the search to regain full health.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30993
   Posted 6/30/2009 11:34 AM (GMT -6)   
Call your GI and ask for rectal meds as well as dicyclomine.. The suggestion for Pepto would be a good one, but Blue5 is already on Lialda.

She does,however,need rectal meds to help get the rectum inflammation under control.

Blue5....you could also add a fibre supplement to your intake of supplements as well as probiotics. the fibre will help bulk the stool and hopefully slow down the urgency a bit.

Do you have bms before you leave the house? If you don't you might want to hurry the process or get up earlier so that you have bms before you leave home.

I don't see why you'd need to go back on pred....I'd refuse it forever as well.

Have you ever tried any of the rectal meds? I'd suggest initially retention enemas...Rowasa or if you're not in the US to use Salofalk or Pentasa...or at the very least to use Canasa up to 2 times a day.

Keep us posted as to how you're doing.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/30/2009 1:13 PM (GMT -6)   
quincy, how does being on Lialda restrict Blue5 from taking Pepto? Were you perhaps confusing Lialda with Lomotil?

I'd also try the rectal meds to see if those help. Hope you get to feeling better soon, and that if you do start Remicade, that it works really well for you!
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/30/2009 1:20 PM (GMT -6)   
My doctor just prescribed me Bentyl for this

I won't be able to take it, though, since it is not ok for breast feeding
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
20 mg Prednisone AM, 15 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success


Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 6/30/2009 1:27 PM (GMT -6)   
ok I know that no one will listen to this but I will try. i had the same problem. except I have to ride the london tube there are no loos in London anywhere. I eat watery fruit in the morrning first (so like a peach or some cherries) then 1 hour laterI eat bananas. If you want to try what worked for me immediatly chew raw leaf baby spinach. Ive been doing this for 3 weeks nock on wood it keeps working. Who knows life can change and raw foods will fail on me but at the present I take one day at a time.

I cant process complex carbohydrates and SCD diet will fail on me as Im not good with too many cooked meats.
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1X 500mg pentasa in the morrning and 1 X250g Asacol every other evening
Diet- Back on the raw foods.
 
Other medical problems- Born with asthma- no medication taken for this.
dyslexia- found out that many people with learning difficulties also have food sensitivity


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 6/30/2009 1:41 PM (GMT -6)   
I have this same problem and have decided that Depends are my friends. They can be a real life saver. They are much thinner than I thought they would be and I've never had anyone notice.
I also take immodium but I wasn't aware that could be bad for some people so I guess I won't recommend that. :)

I am going to look up the Bentyl that Pam222 got, I've never heard of that. Good luck!
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 6/30/2009 3:14 PM (GMT -6)   
Lomitil as soon as your feet hit the floor in the morning. Use the rectal meds to actually get the inflammation under control. The lomitil just works on the urgency.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


Joylu
Regular Member


Date Joined Jan 2008
Total Posts : 362
   Posted 6/30/2009 8:14 PM (GMT -6)   
Ditto what Dr-A said. I would never leave the house if not for Lomotil. Immodium is too mild for my urgencies.
Ulcerative proctitis. On Asacol 3 3x a day,  Started Meslamine enemas nightly again.
  Doc now has me on prescription Pepcid, and  Questran.  Just started that 05/15, so will wait and see.
 Update: Questran made me worse, so I stopped taking it.
 
Urgency is still my biggest problem.  Blood is now gone.


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 6/30/2009 9:43 PM (GMT -6)   
Try an anti-anxiety....and keep a bag handy in the car....I resorted to an old towel the other day....primitive, yes, but beats soiling your pants and could help avoid having to wear depends....
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Left sided UC, most recent scope 5/20/09 UPMC Pittsburgh Presbeterian
Medications:No longer on Pred as of 6/15/09, 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections monthly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 6/30/2009 10:44 PM (GMT -6)   
Try a package of Depends extra absorbent. You can always take them off once you get to work, if they bother you. That's a whole lot safer than bombarding your guts with Imodium or Lomotil. You can also try eating a serving of plain boiled rice daily to hopefully slow down your stool transit time. Then breathe deeply when you 1st feel the urgency; sometimes that can give one a bit of extra time to get to the john. But Depends are really a blessing for anyone who needs to be out & about while flaring-- no one but you will know if you're wearing them, believe me! / Old Hat (30 yrs with left-sided UC ... [etc.])
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