Community Forum

I am 21 and newly diagnosed with UC.  I am a junior in college and I have trouble traveling anywhere outside of my apartment.  I realize it may be mental, but I still struggle.  I can't ride with other people or be at a location without a bathroom.  I want to be involved in school activities and spend time with my friends, but I don't feel comfortable.  I do have an emergency bucket in my vehicle (and use it), but I can't carry it and use it everywhere.  I haven't riden in a vehicle with another person in months.  Any advice would be welcome.  

Thanks,

   Jason

 Reply posted for jasonb.

Part 3

Tip:  During my last flare, I changed my wardrobe.  I wore only elastic pants (like nice active wear/sweat suits) and shirts that fell over the waist to hide the elastic and my bloating belly.  Elastic is faster and easier to remove.   I also wore slides (shoes) for fast removal in case of an accident.  That way, I could remove soiled clothing while on the toilet and place in plastic bags before getting off the toilet.

Most Important Tip of All:  WASH HANDS THOROUGHLY AFTER TOILETERING!!!  WASH HANDS BEFORE EATING!!!  No matter where you are, wash your hands with soap and water!  The hand sanitizers do not kill all germs, like C Diff, the GI infection that I referred to earlier.  Also, my GI doc suggested that before leaving the clinic or any other doctor's office or assisted living/nursing home/healthcare facility, wash hands with soap and water and try not to touch anything on the way out since we IBD patients are so susceptible to GI infections.

If others have any other tips, please pass along!!

Thanks and good luck!

 Reply posted for jasonb.

Part 2

While in remission, I can tell if it's going to be a rough day, if my stomach begins to rumble.  On those days, I will wear my Poise pads just in case. 

Tip:  Use Baby Wipes!  I keep baby wipes (they are cheaper than adult wipes) by each toilet in my home and in each of our vehicles along with pads or diapers.  During flares, I'll keep hospital pads and change of clothes as well in each vehicle.

Tip:  I've seriously considered getting a handicap permit to hang in my vehicle.  I believe your GI doc can write a letter to give to your DMV.

Tip:  Someone else touched on breathing and controlling muscles.  Can't tell you how many times this saved me from having an embarrassing moment while shopping.  If you feel the urge and know you can't make it in time, find that "interesting" article of clothing or food item and stare at it.  Squeeze your butt cheeks hard!  Breathe shallowly!  Wait for the feeling to pass.  Then, proceed to the bathroom.

Tip:  To hide the annoying smells while toiletering publicly, I keep a sample-size container of air freshener in my purse.  These are usually found at check-out stands (like Wal-Mart) or in the samples section at drug stores.  Breath fresheners or cologne samples work just as well.

(See Part 3 for the rest of this response)

 Reply posted for jasonb.

I understand!  I was diagnosed with UC in 2005.  Since, I’ve had a few flares.  The worst began Last Mem. Day weekend 2008 and ended in fall 2008!  I had somehow contracted C-Diff (a nasty, aggressive GI infection) which sent me into a UC flare.  I was going as many as 27 times per day, was nauseas and had terrible cramping pain and finally could eat not one more bite of food.  I was hospitalized to get the UC under control, cutting the times in half.

During this flare, I was forced to use diapers (sometimes double-diapering) because I was not making it in time to the toilet.  As I improved, I was able to graduate to using Poise pads.  I slowly gained confidence and strength and went out for about 1 hour at a time.  On those trips, I used the diapers and sat on hospital pads (green or blue plastic with white quilted lining) in case I leaked.  I did have accidents; but, at least I had the back up.  With each step of improvement, I decreased the size of my pad – diapers, poise pads, maxi menstrual pads, liners.  I kept spare diapers, pads, clothes and wipes in my vehicle.

As another person’s response pointed out, keep your sense of humor to help you get through this humiliating disease.  My teenage son’s chants, “GO, MOMMY, GO!” and other antics this summer, kept me laughing at myself which I truly believe kept me from deep depression.

To this day, in Remission, my UC has progressed to a point that mornings are spent in the bathroom, going at least 4 times before being able to leave the house.  Therefore, I set my regimen accordingly, arising at 5:30am, eating breakfast as soon as I can, so I can get out of the house about 5 hours later.  I find that eating dinner earlier in the evening helps make the next morning not so long in the bathroom.

(SEE PART 2 for the rest of the this response)

 Reply posted for leakygut.

I can't believe I didn't login to this site earlier. I was diagnosed at age 20 with ulcerative colitis, my sophomore year of college and it's been an uphill battle since. I hate to admit it but I have let my condition and fears about whether I'd have an accident while I was out or just have to go to the bathroom so many times while out with friends, that I lost touch with many of my old friends because I just simply stopped going out with them. I am fortunate to have found a comfort level with telling people around me exactly what I have now. I find that if I'm at home or a place where there are plenty of bathrooms within walking (or running) distance and where people wont' notice how many times I go, I don't have a problem but if I'm in a classroom or in the car even for a short ride and there's no place to go, it seems to act up the worst. I too can tell anyone where the bathroom is in almost every common place.

I've been fortunate now to have friends who are nurses and health professionals, who know alittle more about the disease and who are desensitized to the idea of diarrhea, so that it is less embarassing for me when I'm having a flare. The most important thing I think is to tell people the truth and if they care about you and value your friendship then it doesn't really affect them at all.

I take immodium to ease my mind more than anything and if I'm taking a trip to the beach, I take immodium and I won't eat until I get to my destination. It's about adjusting and figuring out ways around what we have to deal with and think about day after day.

Just don't let it get you down, remember that everyone knows what it's like to have diarrhea, we are just unfortunate enough to have it on a daily basis, and most importantly, any friends you want down the road will understand and help you deal with it.

 Reply posted for jasonb.

u hav to be a food detective.  i avoid soooo many things, to help, never completely get rid of the problem. 

 Reply posted for davenp73.

how do you get the handicap plate, it sure would be very helpfulat at times

 Reply posted for jasonb.

Well Jason, all I can say it is a big trial and error. with myself I have become really good at breathing and muscle control. but everyone is so different. I always get ready before I leave the house. my ritual starts with taking a big swig of Imodium. I don't go by what it says to take per dosage. I am a really big guy. so, after I start that I go to the restroom and repeat the swig dosage. this goes on for at least 3 to 4 times within the hour or 2 before I leave. like other people have said on here always keep a change of clothes with you and a few pair of underwear. and with time you will know what places have restrooms and which have the cleanest ones to. when I go with my wife to her stores I know like ross and michales have pretty good ones. it is funny to allot of people that I know this but it isn't to me. And just deal with your flare ups as best as you can. you will have some bad times out there but you have to do whats best for you. Good Luck and God bless!

 Reply posted for jasonb.

I can relate--I am an attorney, and I travel a lot for work and spend a lot of time in the courtroom.  Unlike making a decision to go to a social event, I HAVE to go out sometimes even when I don't feel like it.  So, I have developed some coping mechanisms. 1) always have a complete change of clothes in the car.  If an accident happens, at least you can find a rest area, change, and start over. 2) always have Imodium-you can take up to 8 per day, so that can be helpful for some temporary relief.  3) Develop a sense of humor! You have to be able to play the mental game, too, and not let the disease control your life.  4) watch your diet.  I have begun to learn what foods will make me speed to find the closest fast food restaurant and what ones will settle more calmly.

I wish you the best of luck--do everything you can to enjoy college so you can look back with no regrets!  Here's to healing...

 Reply posted for leakygut.

wow! I feel the exact same way! The only people I ride with are my boyfriend and family. Does anyone else get carsick now? I don't actually vomit, but unless Im driving, I get SO nauseasted and dizzy! My story, breifly: I was diagnosed in  May, the end of my junior year of college, also at 21. I have always been an anxious person, and I have always hated going to the bathroom in public. Although, before my diagnosis I was always constipated, and rarely (maybe once a week) went to the bathroom. Since being diagnosed with crohns I am ALWAYS anxious and nervous about going anywhere, even to class because now the urges are so different than they have been my whole life, and it's not just going to the bathroom, its eating out ( I rarely eat anywhere but my apartment or my parents house!), having bad gas, cramping, mucous, etc! I get it all, although not usually diarrhea (thank god!). I really miss getting out and doing things. The problem: I am a pre-med student, senoir year of college, who applied and will be starting medical school (hopefully) in the fall. This is something I HAVE to get over.   My own remedy: I live with my boyfriend and saint bernard, elmo. When I am feeling really bad I take him out and walk around the partment complex. It makes me feel better to get out and I feel like I am doing something, even though it is small.   At class, I always sit in the back and know how close the bathroom is, especially during exams! And for me, I find that the anxiety of it all actually makes me feel worse! I can cause my symptoms just by worrying about them. So, once I get there I find someone to talk to. This helps me relax and forget that I was ever even nervous. Another thought: I don't know if you have one. but you can get a handicap parking pass with IBD, that could make it easier to get to and from your vehicle in a hurry! I am thinking about getting one. 

 Reply posted for jasonb.

This exact battle is my most difficult issue with IBD. At times I have really had to push myself, to go out and do things despite the discomfort and worry. I travel much less than I used to and that is hard because my wife and I have always loved traveling. We manage ok by doing the travel we really want to do and letting some of the other trips wait until I feel more stable. Often my urgent BMs don't have much stool, instead they're mostly gassy mucous, so a few times I've used a maxi-pad to ease my nerves while traveling or venturing out. It's rarely been a lifesaver, but the security it offers does wonders for the nerves.

As for daily outings, I share your struggle. I have stashed emergency supplies in my car, briefcase, office, golf bag, etc. These offer a great sense of safety. I also rarely ride with others. Either I am afraid to inconvenience them, don't want to explain it all, or fear that they won't fully appreciate the urgency of my situation should one arise. Most of my friends and family are very accommodating, but beyond that close layer, I drive myself. My car acts as a sort of private space I can bring along with me, a refuge I can escape to should the unthinkable happen--which it has, though nowhere near as often as I feared.

Another of our favorite passtimes is eating out, which became much more difficult with my IBD. We still go, but I am careful to select places with sufficient bathroom facilities.  Our bigger solution for this is to do take-out.  Even with nice food, we bring it home, light some candles and enjoy it in the security of home, and it can be just as nice as eating out.

Try not to seclude yourself at home, this will make you miss out on the fun, and isn't going to help your confidence level. My best advice is to push yourself a little at a time. Make sure you do go out and do some of the things that make life fun. You'll gain confidence as you gain experience.  It will get easier emotionally. Good luck. 

 Reply posted for grahamw.

Thanks everyone for the post.  I realize there aren't many answers to our problems, but there is some comfort when discussing the issue with other that do understand the problem.

 Reply posted for jasonb.

Part 2 of 2

When I'm having a flare-up, as difficult as it is, I make it a point to get out (even if it's independently) every single day and make sure that I'm seeing faces, hearing ambient conversations, etc...I think the sites and sounds encourage me to keep rolling along so that in the future, I can enjoy these experiences with other people and without worrying about where the can is.  Try to get to your school's rec center or gym to do some weights or cardio.  This gives you the added benefit of physical activity - plus it never hurts to see the girls working out!

One other suggestion I'll make is invite your friends over once a week or every two weeks and either cook dinner for them or order some food and hang out and play cards or something similar.  That way, even if you're not seeing them everyday, you can at least get caught up on what's going on with your friends. 

Don't be ashamed of your UC - everybody's got some health issue, ours is just harder to deal with and more intrusive than most.  Stay positive, think healthy and get through the rough times as best you can.  There are better times ahead!!

Part 2 of 2

 Reply posted for jasonb.

Part 1 of 2

Hey Jason

Short of seeing your flare up go into remission, theres really nothing you can do to ease the worry of traveling with other people or even leaving your apartment.  The constant worry is one of the worst parts of dealing with UC. 

But as someone thats dealt with flare-ups coming and going for 6 years (coincidentally, my first flare up happened when I was a junior in college), I can offer you a few pieces of advice.  The first thing you have to decide is how much "risk" you want to take in going out and doing things.  If theres something you really want to do (e.g. go to your schools football/basketball game), decide if the feeling of being out and enjoying something like that is worth the worry youll understandably have during the activity.  Sometimes it will be worth it, most times it wont. 

If you decide its worth attending an event, you cant be ashamed to tell people youll find your own way there.  My standard, go-to line is "my stomachs giving me some trouble right now and its making it hard to do things on a set schedule."  I realize its not my stomach but I use that to refer to my digestive system as a whole.  Over the last couple years, Ive found its much easier to give my friends a quick description of the condition so they know why Im not going with the crowd.  If they want to know more, I tell them about it.  If not, at least they know a bit of whats going on and you dont have to feel like youre snubbing them.

Part 1 of 2

 Reply posted for jasonb.

Me too. I want to have the option to drive myself home immeaditately if I start feeling bad. Sometimes its not my gut but fatitue that hits me and I can feel it coming on far enough ahead of time to know I have to get home. But once I cross that line I need to sleep. If I push myself I will end up with a full-blown flare the next day.

 Reply posted for jasonb.

omg, it's oddly comforting to hear u talk about this.  i won't ride in other people's cars either, and i also have emergency supplies with me at all times.  i had to go on trip for work, and i was loaded on xanax just to get through the anxiety of it all.  i can't offer any advice, just support.  tc, sage