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Increased Sense of Urgency - Need help!

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Ulcerative Colitis
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Posted 6/30/2009 3:38 PM (GMT 0)
  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

Posted 6/30/2009 4:10 PM (GMT 0)
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.
Posted 6/30/2009 4:30 PM (GMT 0)
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
Posted 6/30/2009 4:34 PM (GMT 0)
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
Posted 6/30/2009 6:13 PM (GMT 0)
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!
Posted 6/30/2009 6:20 PM (GMT 0)
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
Posted 6/30/2009 6:27 PM (GMT 0)
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.
Posted 6/30/2009 6:41 PM (GMT 0)
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!
Posted 6/30/2009 8:14 PM (GMT 0)
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.
Posted 7/1/2009 1:14 AM (GMT 0)
Ditto what Dr-A said. I would never leave the house if not for Lomotil. Immodium is too mild for my urgencies.
Posted 7/1/2009 2:43 AM (GMT 0)
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....
Posted 7/1/2009 3:44 AM (GMT 0)
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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