Urgency: I think I forgot what normal is!

Even though I am doing so much better on remicade, I still can't beat this urgency. It is mostly in the morning, and occasionally at night, but much better than before remicade. Problem is, no matter what I still don't trust my ability to make it to the restroom. I tend to avoid going anywhere that is unfamiliar to me. It really sucks. I am probably fine, but get a strange feeling like I have to go and start to panic. Most of the time it's just gas and I never really had to go. Now I'm wondering if I even know what my normal feelings of having to go were. The second I get the urge I feel like I have to rush, even if it isn't the case. Does this happen to everyone else? Is there anything that helps you to not panic?

I was thinking this same thing the other day! I also feel like I forgot what normal is. Can't wait to not have to experience the panic that comes along with the slightest urge, whether it just be gas or not.

Laughingduck, so you have the same problem? Worry so much while you are out, and really don't have to go. Have you tried anything to help the mental aspect of it as Fruitgirl mentioned. I am considering asking for something from the doctor, but I haven't decided yet. I hate to take more meds on top of what I'm already taking.

Madabs, that's what I'm worried about even though there are many people on here who say it just takes time to go away. When you say urgency like discomfort, do you rush to the restroom each time you get the feeling?

Ugh, I know what you mean. I still assume that every need for a BM is immediate. Maybe I could hold it? I'm not sure...and not willing to take the risk. I am seeing a therapist for the anxiety. I think it's helping.

Toomuchpoopin, I am really interested In hearing how you do with the therapist. I know I'm not not completely healed,but I do think a lot of my problem is in my head. Have you gotten any tips from the therapist that may be helpful to me.

Soystud, I have been taking a lot of baby steps recently, but it sure would be nice to get out all day without worrying where the restroom was. As you said, the worrying really does take a huge toll on you after awhile. No blowout bag, now your right, THATS AMAZING. I sometimes forget to bring it, and don't feel comfortable without it. I can't imagine having the worry for ten years like you went through.

This plagued me for some 12 years... heck I was even afraid to go to relatives/friends houses and party's and such. Driving around for work or doing a long distance sales call, or even just going out for a day of shopping and such...

For me I had to add SCD to Remicade (many years ago), and that helped somewhat. Recently I've been blessed with a crazy remission so I didn't notice just how much the urgency issue effected my life until not having to worry anymore.

But I feel for you... I wish I could offer some advice as to what helps but to be truthful, nothing really did. I do however think there is a mental aspect cause once I got out.. it wasn't usually a major issue, though perhaps uncomfortable at times.. and a LOT of close calls.

Frustrating.

Wow....I thought I was the only one with the mental part of it! It's such an important thing, the urgency, that when it DOES go away, you still think you have it. I just started Simponi a week ago and I am FINE now, and I have zero urgency, and I know I will have some up and down days, but I HAVE to get it out of my head that urgency is there.

Its a huge part of our lives and you really have to get that out of your head, you know? That's probably the most crippling thing of our disease. I can live with any part of it...but if I can remove the urgency mindset of the UC I'd be in heaven! I'm working on it.....its so much a part of our subconscious. I think that would be such a life changing part of our disease if someone focused on a psychological way to change this for us.

Toomuchpoopin, I think anything you can try to help with our disease is worth a shot. I like the hypnosis aspect that you are trying, keep us I formed of how it is working. I also think that the therapist is a great way to dump baggage without continuously putting it on our families.

Canadamark, I'm right there with you about going out to parties or even to relatives homes. Sometimes I think it's worse when your with family because we don't want them to see what happens to us when we are having our issues.

Peety, since you are on remicade, how long did it really take you to feel like you were almost back to normal. I can tell it has helped drastically, but I know I'm not perfect because I still dont trust myself. At least I dont wake up at night anymore, and usually it's just the mornings that are bad. I'm on my fourth infusion so far.

Scott z, it sounds like the urgency it what makes most of us so miserable. I'm glad to hear that the simponi it working out for you. At least there are some other options out there that may help. I think that after a few good experiences where we can hold it for a period of time will help with the mental part of it. As of now I will remain cautious and not take any chances.

Pb4, that's my problem, I'm scared I will never feel normal again. I think I'm close, but just not there yet. I am sorry to hear that you have been dealing with this for so long. Let us know how you are progressing on the humira.

Uc certainly messes with our heads; huge mental toll. My take is our subconscious seems to run on autopilot based on the emotion and facts of past events. The repeated high anxiety we have when away from the toilet on car ride, or other instance is ingrained in our memory. And regardless of whether we have urgency or not at the current moment, our subconscious is still operating in a worst-case-scenario mode.

For example, I have a relatively short commute to work about 20 minutes. In the past, I have had issues with urgency and I know exactly where every possible bathroom stop is along the route (even if I was blind folded lol). My gut churns and butt hole puckers up when I drive past each bathroom opportunity in the early am, even when I am doing very well and have had no urgency lately.

Sometimes, I'll get myself all worked up and anxious during the drive even when I am doing well, so much so I'll end up pulling over to use a restroom "just-in-case" I'll tell myself. I'll sit there on the toilet for nothing for 4-5 minutes, nothing happens, get back in the car and finish driving to work. That act proves to myself that I really didn't have to go to the bathroom, makes me so much more relaxed for the rest of the drive and the anxiety is now gone. Really messed up stuff running through my head thanks to uc.

As far as how to deal with it? Not sure. I try to dismiss such anxiety whenever I can. I'll think to myself it is stupid don't worry about it I am doing fine lately. Sometimes I can drown it out, distract myself with music and start singing badly to the steering wheel or something. Other times, the anxiety is on a runaway train route, and I have no hope other than to stop and prove to myself I really don't have to go (as in the above paragraph). I am hoping if the urgency is gone for a long timeframe, that I will be less worried. Seems some say it doesn't even after multiple years. Fun.

Poppie,I will look up rock rose. Thank you

Ipoop, well said. That's exactly what I was trying to say. Thank you.

Soy, I want one even though it would suck for my passengers. Or lack of if I put that in the car.

"Is there anything that helps you to not panic?"

Yes there is!!!! First of all as weird as it sounds, you can buy an adult diaper! That's right! I recently had a work event, I didn't want to panic so I wore one. I have "Prevails." You can wear a really tight underwear under and over it, and you can't even tell.

So anyway, that's the first thing you can do. The second is to get into a mindset that people would be more caring than you think if you had an accident. Most people would be sympathetic, they really would! For instance, I don't see anyone laughing or kicking at homeless people lying on the street! Try to think of that movie, "Carrie" as how people would NEVER be! "They're gonna laugh at you....they're gonna laugh at you..." Um....I don't think so.

And then of course the third thing you can do in crucial situations is well....don't eat! Yes, that's always an option but not the best one. But in the most dire of circumstances it works well. And then after the event or situation you can stuff yourself!!!

Good luck.

Regarding urgency and panic, I would talk to myself, "you're OK, you're going to be OK." Turn off music, open the car window and breathe.

Wearing a pad helps ease anxiety too, when traveling.