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Posted 11/5/2008 1:41 PM (GMT -7)
I know many of you work, go to school, date, ect.

I'm old enough that's all behind me, so I can leave or stay home at my will.

But there are times, that from the time I feel the urgency, to making it to the toilet(which in my house is usually about 12 ft away from my TV or computer), I get my pants pulled down and before my bum even makes it down on the toilet, it will start.

I have had to wipe the toilet down on many occasions afterwards.

So my question is....How do the younger more active members here with jobs, small kids, ect handle this?

I'm afraid to even go to the mall for fear of not making to their restroom on time.

The thought of leaving a restaurant after going out to dinner makes me panic(even though I plan ahead with immodium).

I would love to hear how some of you get through this.  Thanks~

Posted 11/5/2008 3:26 PM (GMT -7)
Try to be tuned into when the urge is coming, and don't wait until it's THERE.
It seems when I'm home I put it off, then have to run!
During the workday I make many (many) pre-emptive bathroom visits.
And always before leaving a restaurant! I like the ones close to home best...
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 gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 

Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.

 

Posted 11/5/2008 3:50 PM (GMT -7)
Unfortunately no matter how tuned in I was to my body, I often couldn't make it to the bathroom in time. When this occured in the workplace (nylons usually held it in) I would end up going home sick.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Posted 11/5/2008 4:38 PM (GMT -7)
I could usually make it with no more than a small "spot" on my underwear. I found those wet wipes you use for yourself also work on silk or nylon very well, and it dries quickly. For other occasions, I'd lock my door, clean myself up with the box of wet wipes, put the soiled articles in a zip lock bag and put on the change of clothes I kept on hand for just that occasion. I only had to do that once.
Judy

 

Moderate to severe left-sided UC (21 cm) diagnosed 2001.

Avascular necrosis in both shoulders is my "forever" gift from Entocort.

Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.

"My life is an ongoing medical adventure"

 

Co-Moderator UC Forum

Please remember to consult your health care provider when making health-related decisions.

Posted 11/6/2008 12:19 AM (GMT 0)
with me i made sure before i left i went to the bathroom and then everywhere i went i had to know where the bathroom was.  on the way to work in the morning i took the side streets all the way instead of the highway (for fear of traffic back up) and i took ways that i knew had lots of gas stations and restaurants where i could stop in an emergency situation.  while i'm flaring badly i tend to skip little trips to places where i know there isn't a bathroom.  Also when flaring I had people over to the house a lot to be social.  That way it was still socializing and very fun and you were at home so you could use the bathroom and not worry at all. 

3x3 colazol a day (brand name)

prenatal vitamin

diagnosed with gestational diabetes caused by pred. (bad flare for 2 mos during pregnancy)

mommy of a beautiful baby girl born 8/25/08

Posted 11/5/2008 5:52 PM (GMT -7)
Fortunately, I work from home, but I've definitely had some close calls. Most were when I was in the car in traffic and was practically willing myself to hold it and for the lights to change! I too spot out bathrooms wherever I go. I'm usually better in the afternoon as compared to the morning hours, so I'll run errands later in the day. I'm also careful of when I eat because I will inevitably have to run to the bathroom at least once after a meal. I am thankful that I work from home. When I was working full time out of the home, I would attempt to start my jaunt to the bathroom preemptively to ward off any accidents.
Dx with UC and IBS in 2003

Asacol 4 pills 2x daily

Rowasa as needed

Hyoscamene as needed

Prevacid as needed

Calcium and multi-vitamin supplements

Osteopenia

Posted 11/5/2008 6:18 PM (GMT -7)
It's strange too for me because it doesn't worry me half as much when I am alone in my car, as if I am with my husband. I know if I have an accident in the car, I will just drive home and take care of business. But if it ever happened with him with me I would just die.
I know he would understand, but I would never get over the mortification.

Thanks for your stories. It does help to know you are not alone.
Posted 11/5/2008 6:47 PM (GMT -7)
Here are some tips I use.

Unfortunately when the urgency comes you don't have much of a choice. I take a backpack to work I keep an extra pair of pants, underwear, moist flushable wipes just in case I have an accident, plus a plastic kitchen bag. I have been fortunate so far but I want to be prepared so I don't get embarrassed if something happens. I work in an office so I can run to the bathroom when I need to but if someone is using it I have to try a different floor talk about Russian roullete :(
I know some people use liners for their underwear in case they cant make it, they are sold near the adult diapers.

Also if you are flaring keep a thick towel on your bed just in case at least you wont get anything on your sheets or mattress.
Prednisone 30mg a day
Clotrimazole Troche (keeps the thrush away from the Pred.
Remicaid
VSL 3DS


34 year old male Southern California

Posted 11/5/2008 8:52 PM (GMT -7)

When I'm flaring really (and I mean really) bad, I head to the bathroom the instant I even think I might have to go.  I've been lucky that this has been sufficient.

When a flare isn't terrible, I can often get the cramping and urgency under control by standing still or sitting and taking some deep calming breaths and visualized my bowels loosening from the cramp.  I also try to block out my surroundings and just focus on my body and breath.  I know it sounds hokey, but its saved me from using the disgusting bathroom at my grocery store on numerous occasions.

I think the key is not to panic.  The anxiety causes more cramping and urgency.  I know that's easy for me to say, since I haven't experienced the horror of having an accident.  I think it would be harder for me to stay calm if I'd had an accident in the past.
Katie, 30.   Chicago 'burbs.

DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)

Current Treament:  Asacol 1200 MG 2X daily, Iron 325 MG 2X daily, Zoloft 50 MG daily, Multivitamin.

Diet/Exercise:  Spinach/sunflower and low-residue.  Yoga, walking, cardio.

Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa, Bentyl, Cortenema.

Status:  Heading to remission???

Post Edited (Kiss520) : 11/5/2008 8:55:17 PM (GMT-7)

Posted 11/6/2008 12:33 AM (GMT -7)
Sorry if this is a little graphic, y'all know how it is tho... but it works.

During a flare I will go to the bathroom, if available, as soon as I feel it coming. When I'm sitting there ready to go I try to fight it off as long as I can by calming myself down and letting my twisted guts relax. It sounds like a weird exercise but it helps to keep your "stop" muscles in there toned. It also helps by keeping the tenesmus to a minimum which causes further inflammation as the body keeps thinking it has to "go" because I'm all worked up.

By the time I've calmed down I can take an easy BM without the straining. Many years ago I used to sprint to the restroom on the verge of panic, make a quick but forceful BM and repeat over and over throughout the day. I've learned thru the years that this will keep you out of remission.

I've noticed that the less times per day I actually deposit a BM during a flare the quicker I get back into remission. Sometimes just the stress of knowing I have to go all the friggin time puts me on edge and I try to approach the process as calmly as I can.
Diagnosed w/ Ulcerative Colitis in 1995

32 years old

Living med free  

Currently in remission  

Posted 11/6/2008 2:44 AM (GMT -7)
i have found that mornings (no breakfast) and early afternoons work best for me so thats when i go out most. also the pre-emptive visits seem to help. a couple of times i took an extra 10mg of pred a couple of hours before going out in the evening and this also seemed to help, but i wouldn't swear by it.

i know that the GIs say that one dose of steroids is the way to go, but i am not convinced. is it a coincidence that my worse periods are the hours before i take my daily dose. hopefuly someone can explain why it should be one dose better than my GI did.
Peter

49yo single dad 

dx 1985

mesalazine 1.5g, prednisolone 15mg

tried infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept

Posted 11/6/2008 5:14 AM (GMT -7)
You know, I do the same thing Ucwarrior! I will try to hold off as long as possible, relax and try not to think about it. I have got pretty good at it over the years. But sometimes no matter what how much I relax, the cramping just gets so bad that I have no choice but to go. I don't hold it for a long time, just long enough for the urge to leave a bit.

 @--->--SHERRY--<---@

Moderator for Allergies/Asthma and Co-moderator for UC

~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin

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Posted 11/6/2008 6:15 AM (GMT -7)
UC warrior - doing the same thing has helped w/ my anxiety. If I am home and have to go I try to hold it for a bit so that when I am out and have to go I wont panic as much. I'll think ok, I did this at home fine I can do it here.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.

Posted 11/6/2008 8:10 AM (GMT -7)
Agree with ucwarrior and Red_34. It's a combination of mental and muscle control. In the book Listen to Your Gut, the author specifically describes her method of "training" the bowel. Takes patience and practice, but really makes a difference. You can practice at home in your bathroom where you have the assurance of nearby facilities until you feel confident in the technique. Even at my sickest, I never had any accidents and only one close call.
Diagnosed with ulcerative colitis spring 1999.

 

Maintenance dose sulfasalazine.

Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.

 

 

Posted 11/7/2008 5:00 PM (GMT -7)
i have serious urgency.  i find that when i must be somewhere (in the morning), because most of my bathroom trips are in the morning.  usually once i am done, i am done,  it is just that it may take anywhere from 3 to 15 times to be done... anyway,  i must stand up and "get things moving"  if i lay around in bed and watch the news and use my laptop, i dont get "the feeling"  i have to get up early and stand up.  if i lay around, the feeling may not come until later...leaving me in a panic about getting it "all out" before having to leave the house.  and often, if i dont do what i know will work, i am late every time.

Posted 11/7/2008 5:19 PM (GMT -7)
I have intense urgency as well but I've only had two partial accidents, once when I was prepping for a c-scope and didn't quite make it the three feet to the bathroom, and one time when I was in traffic and I was literally crying and begging for the lights to change and people to drive faster, and then when I got home (I was living with my parents) the front door was locked and I didn't have a key!! So I stood there, crying, banging on the door and calling the house phone on my cell, it was late and they were sleeping but luckily they woke up and let me in and I just sprinted to the bathroom as soon as the door opened.

Usually the breathing exercises work great for me. Say I'm sitting outside on break at work and the urgency hits (this happens every day).. I sit for a minute and take slow deep breaths and try to mentally calm my guts as the above posters said, and I just wait until I can comfortably get up and speed walk to the nearest restroom without feeling like I'm going to explode any second. Sometimes it doesn't work and I just have to get up and go but there are times when I can't get up right away and it seems to help. I'm a receptionist so I'm really tied to my desk, and if I'm on the phone with someone I can't just say "Call back in a minute, I have to go to the bathroom!!"

Another thing I noticed is if I have to pee and I try to hold it, then my stomach will start to hurt as well. I don't know if it's the bladder pushing on the intestines or what but I always have to pee when the need strikes as well or else it will kick up the BM urgency too.

Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg, Sulfasalizine 3000mg/day, Azasan 100mg


Posted 11/7/2008 9:43 PM (GMT -7)
OMG! Edie me too! I thought I was the only one. Anytime I hold my pee to long when I finally go I have D too. Funny you should mention that you are a receptionist. I just posted on the IBS board that there is "always a way." I work at a law firm but sometimes fill in for the receptionist. I must confess that I have hung up on someone, used the bathroom, called them back and said "I don't know why but we got disconnected. Sorry about that, what were you saying?" Lol.

Be creative - there are TONS of excuses! Oh, a delivery just arrived and I have to go sign for it, can I call you right back? Let me grab your file and call you right back. I need to grab a note pad, I will call you write back. Oh, an international call is coming in on the other line can I call you right back?

Also, you don't really need to make an excuse. You can always just say, I'm sorry to interupt you but I will have to call you back in a minute. Then call back and just say "I'm sorry, you were saying?"

Obviously I wouldn't do these things in front of your boss but I have done variations in different settings and no one has ever seemed upset.

PS: Lots of places have multiple phone lines and people are used to being put on hold when they call places.  You could always just ask them to hold if you think you could be quick enough!

27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.

Posted 11/8/2008 11:02 AM (GMT -7)
I really makes me feel somewhat better reading these repiles.

I tried the "control", but failed miserably.

I also have to get up early and get busy moving in the house before I even think of leavig the house.  I also HAVE to eat something to speed the process.

Those who have to be at work early in the AM, I feel for you.

Posted 11/8/2008 6:15 PM (GMT -7)
sometimes I put off the process by moving very little and eating nothing and then driving to work. Once I get there I eat and frequent the bathroom.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.

Posted 11/9/2008 2:46 PM (GMT -7)
     Joy, I have three port a pots in the house.  One in the family room, one in the basement (where I do my ironing) and one in the computer room.  You would think..wow Chris must have an enormous house.  NOT...it is only a 1100 sq ft rancher.  But when I am in a flare...I gotta go when I gotta go.  I call them port a pots but not sure if that is the correct name for them.  You can purchase them at your local medical supply store.  I have one which belonged to my mom.  The other two I purchased.
62 yr old granny. South Jersey

Diagnosed with ulcerative proctitis in 1998 in hospital

Hospitalized (2nd time) in May 2008

Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.

Posted 11/9/2008 4:18 PM (GMT -7)
once again....http://www.chemisan.com/product.html   ta-dah!!!! Best product ever invented. I do not have one....yet! But you bet that site is bookmarked on my browser! How much better would we all feel with one of these babies in the backseat, or in a cabinet somewhere in your house?!?! I love the portapots all over the house idea.... too funny!
diagnosed with UC '02

meds-

Asacol- 8 tabs/day

Remicade-10mgs/kg- since 4/07

Imuran- 150mgs/day

Culturelle

Fiber supplement

 

 

Posted 11/9/2008 5:17 PM (GMT -7)
When I was younger, my UC was at it's worse and so was the urgency. I am a teacher (retired now) and I had to learn to use mind over matter. There were times when I simply could not leave my class and as bad as the pain was the thought of being embarrassed in front of my class was even more painful. As well, in some schools, there was only one bathroom for the staff..........
over the years I got better and better at it but at the same time, there were times on the way home from school where I had to stop in designated (in my mind map I knew where every bathroom along my routes were).
I also used a lot of Immodium.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm

Posted 11/10/2008 1:21 PM (GMT -7)
Hi everyone. New member here. Not really an internet group type person, but it feels good to commiserate as this topic is near and dear to my heart. So many things described here resonated: not knowing whether you're "done" every morning, mental strength to overcome attacks, knowing every bathroom on a given route.

I just spent a nine-month period where I traveled over 150,000 miles in the air. There was no more tense period than the hour or so at take-off and the hour at so at landing where you cannot get up. I actually rarely had issues (thanks to Immodium) but the _fear_ of those issues was just as bad as an actual attack.

I find that traveling or any sort of important social gathering requires some preventative Immodium. And, I agree with all the previous posts about breathing. It helps tremendously. Stress begets stress. I am an avid golfer, and for some reason have almost never had any issues on the course. Maybe it's because I'm doing something I love.
Posted 11/10/2008 3:24 PM (GMT -7)
I travel and golf too. I hate the seatbelt sign!! (Were you campaigning?)
I walked 18 holes last week without a restroom stop or visit to the woods (clubhouse was closed). It was quite an accomplishment, I was very quietly celebrating. Now my back is KILLING me.

This is my first message board, it's been really great.
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 gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 

Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.

 

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