Urgency - how to deal?

Had urgency for many years, it is highly cyclical for me: most often in the morning after breakfast. I preempt the urgency by having a movement before breakfast. If I am going somewhere, I visualize the urgency and most often trigger it, go to the bathroom and that tends to release the physical urgency for a couple of hours.

So the physical component I solve by preempting and releasing.
The mental component I solve by feeling that I am in control of the urges, that I can make a bowel movement happen when I want it. Also when urges come I try to stand by the toilet and attempt to hold it up for a minute or two. If it is worse I put tissue on my hand and press on the sphincter upwards with the whole hand. This signals the sensation to cool off.

Ten percent of the time these procedures don't work, but the other 90 percent do work for me. You may want to consider researching Phobias and how to desynthetize yourself, particularly if the urgency is heighened when you know there is no bathroom around.

This (and worse) is exactly what I deal with every day!!

Before Christmas my GI told me that the urgency (and accidents) wasn't my UC?!?!? But instead was my IBS. Honestly, it is what it is... regardless of the label. And I know that there's definitely a mental element to it, because if I think about going somewhere that I've either had issues with before, or that I'm unsure about access to a bathroom, then my anxiety goes up, and thus my urgency goes up. And don't even get me started on getting stuck in traffic! YIKES!

I don't have any great tips on coping, as that's what I'm looking for help with too. But, I do wear a depends every time I leave the house these days. That helps to at least contain any accidents I have. And I plan any outings carefully.

Like you, I'm finding myself more and more hesitant to go out, and that's driving me nuts. At the moment I'm on maternity leave, so have the luxury of staying home if I want to, but fear going back to work. I also am sad about the fact that my UC is impacting my daughters experiences already, as I've stopped signing up for baby swim class, or going on long walks with her, etc.

quincy said...
wow...no mention of rectal meds on that list of possibilities. If you can take the Lialda, ask the doc for the Rowasa.

Hi Qunicy...No i am not on any rectal meds i think i need to ask about that. UCpainNass

Oh my! It's a little encouraging to find some folks who can identify with my experiences EXACTLY!

Just recently, my husband and I were on vacation and of course I was unfamiliar with ALL of my surroundings and it was really very difficult to cope with the urgency! It was/is near constant! I really worked hard the whole week and a half coaching myself to get through it and not ruin the whole trip looking for a potty every five seconds :) Husband has a really hard time with urgency because he can tell there's a mental component - and so can I! What he DOESN'T quite understand, though he's helpful as can be, is how hard it is to CONTROL the mental aspect of urgency.

I agree with what others have said - when I'm in unfamiliar surroundings, I start to get scared and I suddenly become aware of this queasy feeling of needing to go to the bathroom. When the bathrooms not free - suddenly I start to worry and I feel the urge to go. When we are traveling long distances... well, let's just say, I pray. A lot.

Right before we left for the vacation I had my first REAL accident. I had had LITTLE accidents before; some times at home I had waited to long to get to the bathroom, and once, while out, I had misjudged how badly I needed to go and had suddenly realized it was time and made a rush for the bathroom, but not soon enough to keep my undies from getting ruined. But this accident had been the worst; I had been queasy all morning but had survived our 40 minute drive and a 40 minute church service, then had gone to the bathroom and felt a little bit of relief, but I could tell I hadn't completely emptied my bowel. Well, we had planned lunch out with some relatives and as we pulled into the parking lot, well... I just couldn't stop it - it came so suddenly right there in the car =( I think I'm making even all of YOU cringe, lol. My relatives were waiting in the restaurant while we were trying to clean everything up... my one salvation was I managed to keep my dress clean and just had to go commando for the lunch. Oh.... it was miserable. But you see how this has only served to INCREASE my nerves???

Here are some things that have helped us:

If I'm feeling the urge to go, I make myself wait a while because I KNOW deep down that many times, nothing will come out (unless I sit for 30 minutes - miserable). If it doesn't go away, or increases, I have to figure out where the next bathroom is. If I'm with my husband, instead of just telling him I feel bad, I tell him - I need to go to the bathroom in X number of minutes. If it's 0 minutes, then I always have this plan ready to pull the car over and run into the woods and go. LoL. I'm serious. :)

Sometimes it helps if I'm behind the wheel in our car, even though he likes to drive. It calms my nerves giving me a little more "control."

I've also realized that I usually don't get urgency when I'm having good conversations with people or I'm playing a sport or basically if my mind is really engaged in something else. SO sometimes it helps to read the news on my Iphone, or read a book, or even just start up a good conversation with my husband.

I agree with the person who said they wish they didn't have to eat because they feel best when their stomach is empty - that's me too! I try to avoid chocolate and large amounts of food in general when I'm worried about bathroom locations.

Sometimes I just squeeze my bottom together really hard and if it's actually gas that's giving me urgent feelings, then it'll 'go back inside' until it bothers me again in a bit.

I do try to just... not freak out. Just the other night I told my husband I didn't want to eat at a little BBQ stop b/c there were no RR's. He really wanted me to try to overcome the UC, but that is just plain scary.

I'm trying not to let it get me down though - I really just try to control the anxiety and figure out where RR's are and realize that even if I DO have an accident - it's not the end of the world.

When I was at my UC "peak" I had lost 80 lbs. Nothing but liquid and blood for 1.5 years. If I just thought I had the inkling of having to go I had better start moving to the bathroom, which needed to be 25' or less away and sometimes that was too far. I mean if I waited 30 seconds I would not make it. I had zero control, my body would just do it's thing then and there.

At this point my GI was commenting about how awful I was looking. I was coping, he was suggesting surgery or Remicade.

What I found was that within 15 min to 1/2 hour after eating I was in the bathroom for sure, and then depending on how much I ate every 15 minutes or so after that. The only way I could go anywhere was to not eat before a trip for about 3-4 hours before my adventure. At that point being very cognizant of bathrooms as I would invariably still have to go. I found myself going to a bathroom even when not at urgency level but just to go, at which time I was usually able to produce something which helped give me some confidence that I would survive the trip.

Days where I fasted created the best next day where I hardly went at all, maybe only 6 times. Still some with the blood but nothing like a "normal" day. Being a diabetic the not eating thing was not so good to do but I needed to get out. I still remember driving a few times and 'wham' no chance to even pull over, just right there in the drivers seat. Always traveled with a bag of clothes and supplies.

Could never bring myself to do the diaper thing, probably should have as I had some amazing messes to deal with.

IHATEUC! kids can be mean to each other, it is the nature of the age. Stand strong. I notice you have not tried LDN or some other treatments. There is no one fix for all of this as different things work for different people. I am going on my 8th month of remission. LDN was my path to "normalcy". Have your parents look into LDN and also read some of the other posts on fecal implants, diets and antibiotic formulas. I posted my experience under the post Ulcerative Colitis in Remission. There is a lot of useful information in the forum, dig into it, get creative and pro active. Keep a diary of what you eat and frequencies and see if you can find some correlations.