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Anthony1977
Regular Member


Date Joined Jan 2009
Total Posts : 413
   Posted 1/21/2009 5:25 PM (GMT -6)   
Well, I am actually very new to this. I was just recently diagnosed with UC about 2 months ago with something called pancolitis. I am very greatful there are support groups like this where people can discuss this stuff. I found it very hard to discuss this with friends and family, but now I don't care I just want to get better. My question is does anyone have a fear of going out and not being able to make it to the friggin bathroom? for some reason these feelings are starting to manifest themselves in me and I start to get paranoid when I leave the house or any establishment that has a working and clean bathroom. I, for the most part, will try to go to the bathroom even if I don't feel like it before going anywhere just to give me piece of mind. Thanks all, and have a great night!

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/21/2009 6:52 PM (GMT -6)   
We've had many threads about anxiety, and how to deal with it. It can become an obsession, unfortunately. Keep supplies in your car, is what most suggest, just in case you have an accident. Somehow knowing you have that ready can ease your mind and body. And pre-emptive bathroom visits are always a good idea!! Why not?
I only discuss it with my husband, not anyone else. Friends don't even know. But that's just me, it's a personal decision.

You'll learn a lot here about how to manage!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 1/21/2009 6:56 PM (GMT -6)   
I second everything Peety said.... yes, by all means, DO prepare yourelf for an accident- they are practically inevitable. Carrying supplies with you, extra pair of pants, underwear, baby wipes, plastic bags- this will ease your mind. And also, everywhere you can use the bathroom, use it! I find too, when I go into a store or business, I immediately look around to locate the bathroom- just knowing where it is is a big relief. And try not to sweat it too muc- the more you think about it, the more you'll feel like you need to use the bathroom. It's tough.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


Anthony1977
Regular Member


Date Joined Jan 2009
Total Posts : 413
   Posted 1/21/2009 8:56 PM (GMT -6)   
Thank you very much for your replies.  I have had many close calls and I don't want to jynx myself just yet.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/21/2009 9:13 PM (GMT -6)   
Once you find the right mix of meds, food and supplements things should really start to calm down for both you and your system. I also have pancolits (we're sooo fortunate lol) if I can be of any help just ask away : )


Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/21/2009 9:16 PM (GMT -6)   
I also have pancolitis and when in a major flare I do have to limit my time in public. It's a horrible thing when it comes to that, but I feel more comfortable knowing my urgencies are taken care of within my own home. However, when I do decide to go out of town and have a day of shopping I prepare in advance and know where all the bathrooms are.

I'm glad you're finding comfort with the online support groups! I did too. This is a very frustrating disease and no one fully understands unless you have it yourself.

I hope you find the right forms and levels of treatment to get your flare under control!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Meeting with a surgeon next week...and hopefully scheduling the surgery by the end of the month!


JM21204
Regular Member


Date Joined Dec 2008
Total Posts : 254
   Posted 1/21/2009 9:22 PM (GMT -6)   
I have pancolitis too. I think you develop a feeling for it over time, when it's going to be a good day vs. a bad day. For me, when I have a flare, most of my issues are right when I first wake up. So I get up a little earlier and try to get the most of it out of the way. Otherwise, ditto what the others said. Always know where the bathroom is and go preemptively.
33 yr old female
Diagnosed with Pancolitis in 1/2007
Baby due 3/2009
Meds:1600 mg Asacol a day, Ferrex, Pre-Natal Vitamins, Lovenox, on and off Prednisone (40 mg then taper)
 


newfynut
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/23/2009 1:09 AM (GMT -6)   
Always carry a totebag with a spare pair of undies, pants and wipes. Eat very lightly the days you need to go out. Only wear DARK pants...if you do have an accident and dont have extra jeans it wont show. At the first sign of a tummy rumble--GET YOURSELF TO THE BATHROOM. You will NOT be able to hold it in, just GO.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16724
   Posted 1/23/2009 7:58 AM (GMT -6)   
Oh yeah, I think we all fear it. I am feeling a lot better now but before, when I was in really bad shape, I wouldn't go out for any amount of time. I wouldn't eat in the morning so I could make it through the day without worrying about toilets. Usually I would end up on the toilet a half dozen times regardless. It's very normal to worry about that when you have UC. I thought I was the only one before I found this board. Try to focus on getting better, when your flare is gone, you wont worry so much. I am feeling almost "normal" lately scool
Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)


jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 1/23/2009 8:49 AM (GMT -6)   
Dude I had to crap my pants because I was stuck in traffic. No big deal just went back home to shower and went to work an hour late. I really don't give a crap anymore.
Age: 31
Location: Missouri
Diagnosed with UC in 1997.
Medications: 100 mg Azathioprine a day
 
 
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 1/23/2009 9:21 AM (GMT -6)   
too funny-- honestly, that attitude will help you! So you have an accident, no big deal. Remember- nobody will know except you! When you stop being fearful of having an accident, they really seem to lessen.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


Anthony1977
Regular Member


Date Joined Jan 2009
Total Posts : 413
   Posted 1/23/2009 11:09 AM (GMT -6)   
Thanks, guys! I am on prednisone now with asacol and my symptoms seem to be waning. I was hospitilized for a week when it just got so bad. I had been going on with all this for 6 months w/o meds thinking that it would just go away and it would but then come back 10 fold. I mostly fear having an accident in the NYC subway where I commute on. Most of my BM's seem to happen at night and in the morning. Is this common with a lot of you guys that have pancolitis or other forms of UC? A lot of times it is gas but I am too afraid of putting all my chips on black. Have a great weekend!
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