Psychological urgency

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blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 4/16/2011 6:12 PM (GMT -6)   
I am just starting to get out and do a few things since my surgery (yay!). I find that in my head, though, I still have colitis and urgency..... when I sit for a while in a crowd, I start thinking that if I don't get to the bathroom immediately, the bag is going to explode, and I start getting worried and distracted .... and it's not even 1/3 full or anything. For SO long I had to be so conscious of bathrooms, and my head is not yet wrapping around the new reality.

Did this happen to you? If so, did it go away? After how long?

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 4/16/2011 7:14 PM (GMT -6)   
Hi blueglass,

I think maybe it took my daughter a week to get over that. She would go the bathroom and come out and say it wasn't full. So it does get better. Good luck to you.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 4/16/2011 9:32 PM (GMT -6)   
Happened tonight - went out with friends to a large social gathering. Hubby went to the bathroom 3 times mainly to check everything was ok especially since we have been dealing with leaking issues and changing every other day and less for the past few weeks.

This change was done on Wed night and was fine and still is fine and is now 3 days. Once we get a comfort factor going once again with a more dependable schedule it will get easier for sure when out and about.

I'm sure in time this will get easier and easier and you and hubby will be less and less concerned with checking everything is ok.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

run4pancakes
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Date Joined Oct 2008
Total Posts : 938
   Posted 4/17/2011 8:46 AM (GMT -6)   
I was doing ok with this aspect until yesterday. I think it was something I ate, but toward evening my bag filled up with pretty much water consistency output. I emptied, then 20 minutes later had to do it again and a third time shortly after that. We were getting ready to go to dinner and it made me really nervous that the bag would leak or get too full and break or something. I kept finding myself kind of patting it throughout the meal to see how it was doing. It was a weird feeling to suddenly be worried about that sort of thing again. :-(
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 4/17/2011 10:46 AM (GMT -6)   
Yeah, I was like that at first too. You just have to get used to knowing how often your bag fills and stuff like that, and be able to tell how full it is by patting it. More than likely, unless you have a diarrhea problem like run4pancakes just described, you're usually fine for at least a couple of hours.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 4/19/2011 1:51 PM (GMT -6)   
run4,

I have had that clear yellow bile juice pouring out of me all of a sudden too. Had you had sugar, fake sugar, or were you too empty? Being too empty can do that did you know that?

I am still working on figuring all this out too. Hope the dinner went OK. Rosemary

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 4/19/2011 8:57 PM (GMT -6)   
I had those thoughts at first too. You will get more used to your schedule and become more confident with how often you have to empty, and then those thoughts start to go away. I haven't had any leakage issues where stool completely came out from under my wafer to get on my clothes etc., so I found that I was able to forget about my pouch pretty early on and not worry about it much. I too can pat my hand on it and tell when it is time to change... I have found I still have a while even when it seems like it is getting pretty puffy. I am still careful with certain things though... like artificial sweetener, because I know if I eat that my bag fills up instantly and I better be close to a bathroom. I also got nervous one day when I thought about the possibility of getting stuck in a multi-hour traffic jam which sometimes happens in Colorado on the main 1-70 corridor through the mountains. So sometimes I still do have those "where is a bathroom?" moments.

I do find that I still have some stress about it all though compared to my pre-UC days when I never thought about the bathroom at all. Sometimes I still long for those simple, spontaneous times. Though life with my ostomy is 100 times better than life with UC, having an ostomy does take planning. I found that I was getting down about it all again today, and I have no idea why. Guess it was just my time for a little pity party.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/20/2011 3:54 PM (GMT -6)   
Blueheron, hope you're doing better today. I was thinking today that I barely remember my pre IBD days, well, I remember in my head being in school and waiting til I got home for a bowel movement because I didn't like the public bathrooms..... but I don't really remember in my body what it was like to be able to do that.... I did have a moment like that a few days ago, though, where I was out at a public bathroom and thought I could just wait until I got home, and that was nice.

Even people w/no gi problems have some "where is the bathroom" moments. Easy for us to forget that....

I think my current anxiety about bathrooms has happened mainly at large events w/uncomfortable chairs (butt wound is not healed yet), and that it's partly a more general anxiety that's getting focused where I'm used to. Today I went into work for a bit (I'm still on leave) and saw people in small, behind-the-scenes kinds of ways (with softer chairs) and I was fine. Good to experience.

I do think little pity parties are OK..... just no pity proms or gala pity balls :-)
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery
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