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Questions about urgency......

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Ulcerative Colitis
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Posted 12/18/2008 11:25 PM (GMT 0)
Am new to this site and new to UC. Was diagnosed in AUg 2008, but living with symptoms since nov 2007.  I finally think I might be starting into remission. Like today... woke up 3am... major bathroom trip. went back to sleep, woke up at normal time 7 am, small bathroom trip, one more before I left house at 9 am.  Rest of day no more trips? is this the start of remission? before I was going 10 plus times a day. Now the rest of the day I have had the urgency to go... darn near panic... but when I find a toilet... Nothing.  This situation has been goin on for almost a week. I have been watchin my diet. Takin my meds. I just am not confident about the gurgling gut and control.  Is this whats called remission or does it get better? And how do you all deal with this phase? I am self employed as a horse shoer. Means I am either on the road driving, or in barns all day. and most barns don't have a bathroom. Panic attacks set in and I'm sure these make situation worse. Only time I am comfortable is when at home. I also question whether or not my actual job is hurting situation(not that I could quit). But my job involves being bent over at waist all day. holding up horses. Situation "seems" worse when working, but this could be my mind.  I also feel more urgency when wearing jeans. Sweat pants feel best. Is this all my mind? or is this normal? At same time driving in my truck seems to bring on urgency...  Am really beginning to think this is all in miy mind. But Its darn embarrassing to take the risk.  Anyone have any insight?

 

Posted 12/18/2008 11:43 PM (GMT 0)
I hear ya!!!! it's the nature of the beast that I've been battling with for 17 yrs with my crohn's colitis and it sucks...when you have the urge to go you never know for sure that it will be nothing, but for me usually something would come out back in my days of excessive mucus especially. Proctitis is usually the result of this and using cortifoam rectal meds, clearing up the proctitis helps because even though it's still like that for me (with urgency issues) it's much better when there's no proctitis going on as well.

:)
Posted 12/19/2008 1:50 PM (GMT 0)
I am thinkin about takin some immodium. I asked about it in another topic and was told it should be safe. My doc said little doses infrequently would be okay. I NEED to get some xmas shoppin done this weekend and its hard to do with crowds, traffic, and such. Will immodium stop the urges? Even when there is nothin to come out? its like my colon is spasming. LOL. Or like I said, maybe after this time its my mind causing this? ANy thoughts? Immodium stop the urges?
Posted 12/19/2008 3:12 PM (GMT 0)
I don't think your job has anything to do with the loss of control. When I had UC and urgency I found that I lost control in situations that were benign in terms of stress and being physical. One time I was actually lying down and the other notable time was in a meeting while sitting. Neither of these examples was I under stress or stressing my body. Urgency is just what it is, uncontrollable and random. My doctor prescribed both levsin and levbid which I took faithfully but never found positive results. You could try those medications. I hope you see improving health in the new year.

Sue
Posted 12/19/2008 3:36 PM (GMT 0)
You may be on the path to remission but what I consider true remission gets much better than what you are describing. I now have no urges, no cramping, no mucus blood or "D" and go once a day sometimes once every other day. I finally consider myself in remission. Since it looks like you are still on pred. I would just say to give it time to get you into full remission. For me it did not happen fast and took several months to get to this point. I am also on Lialda to help keep me in remission. about your job...I think that having something to distract you and get you out of the house during the day is good.
Posted 12/19/2008 4:34 PM (GMT 0)
I find when I know I am going to be away from a bathroom, that I get urgency too.  I carry in my car a portable toilet...I got at REI.com, toilet paper and a change of clothes.  If I get bad enough, I have no problem "going" in my car in that portable toilet.  Just having it with me gives me "peice of mind" and I find I have less anxiety with it.  I still have trouble on planes and in crowds.  But I too think the cortifoam will help this.  I think it is caused by inflammation in your rectum.   Have you tried any rectal meds?  Good luck!!

Posted 12/19/2008 4:41 PM (GMT 0)
They have me on the rowesa enema. Not sure about the portable toilet idea. I keep toilet paper on me at all times since I am in barns and outside. I also keep a couple changes of clothes in truck. Have only been on the rowesa enema for a week. Hopin in kicks in soon, but I haven't been able to retain all of it. AM to talk to my doc on tuesday, maybe he will change something. In beginning he tried suppositories and I could handle those, but nothing seemed to work. Maybe he will go back to those.
Posted 12/19/2008 7:05 PM (GMT 0)
Or maybe try cortifoam, it's a steroid based foam enema that seems to work quicker than anything eles I've ever tried.

:)
Posted 12/19/2008 8:46 PM (GMT 0)
     When my flare was at its worse and I found it hard to retain Rowasa and the Cort enemas, my doctor prescribed Canasa suppositories.  They are quite expensive even with my insurance but they helped until my condition improved somewhat and I could start retaining the Cort enemas once again.

     I also have a portapotty which we always kept in our van but now we just bought a Ford Expedition and I think it will be a challenge for me to sit on a portapotty in that!  LOL!  Anyway, hope I don't ever need to again.  I am in remission and it is heaven!

     You'll get well again.  Did you try antispasmotic medication?  I never did but read some of the people posting have used them and they helped.  Think I will try them if need be next time...which I hope and pray there isn't a next time with the ulcerative proctitis.

Posted 12/19/2008 10:19 PM (GMT 0)
Will definately ask the doc next week about antispasmotic meds. I tried the imodium today. helped alot. still unsure about safety of it. worried it might prolong this flare ( my first bout with this disease ). Am to go hunting tomorrow, definately going to try it again. And then to go Xmas shoppin on sunday. Am home for evening now. took imodium at noon. Figure I won't take anymore till before I go huntin in morning. Give myself tonight to be "normal". ALthough this isn't normal. LOL. I have a F-150. Thats the reason I am unsure about the porta pot idea. no where to put it. No way to use it. truck has bucket seats. Plus kinda worried about the smell in a cab that small and cloth interior. Have had to "hit the back roads" a time or two, but am always worried about gettin caught. Embarrasing and hard to explain.
ANy suggestions on antispaz meds? I think the doc tried me on these very early on when he thought it was spastic colon. It was a med called pamine forte or some such. Didn't work, but thats all he had me on. might help now with the balsalazide, pred, ad others. I still have about a half a month of the canasa supps, since they weren't workin he moved me to the rowesas. I honestly feel whats helped most is the Gluten free diet. I know diets are diff for everyone, but this one seems to work for me. I still have ALONG way to go to get back to normal, if there is such a thing anymore. BUt I can at least leave the house again so....
ANd this site helps alot. Nice to have people to talk to who understand and have opinions and experiences.
Posted 12/20/2008 12:27 AM (GMT 0)
I used to have to "go" every time I would get in my car, I know it was all in my head. I saw a psychiatrist and they wanted me to leave my house every day to practice and to re-train my brain that everything is going to be okay. It didn't really work. When I'm flaring, I'm paranoid about having to "go". It's like a vicious circle. I take Immodium and it helps tremendously. I also started taking a 1/2 a Xanax (anti-anxiety med). It works awesome!! I leave my house and don't have a thought in my mind about UC. It doesn't make me feel loopy but it makes me feel completey normal with no fear or anxiety.
Posted 12/20/2008 5:45 PM (GMT 0)
I don't think the urgency in the car was in your head. I think that maybe the motion contributes to the urge. I have the same thing. I think that I may get really nervous about the fact that I have to go in the car and that may make things worst, but I don't think it's purely psychological. This is quite the disease- what a head game!

Female 43 years old
diagnosed at age 18
current meds:
Salofalk
6MP
Golimimab study
Posted 12/20/2008 8:00 PM (GMT 0)
Urgency is simply one of the symptoms of having this DD, it wouldn't really make much difference if you're out or at home, it's just the nature of the beast...it's not psycological, it's the disease.

:)
Posted 12/21/2008 12:23 AM (GMT 0)
I agree, urgency can be caused by the anxiety of not having facilities nearby. If I were you, I would try 1/2 an immodium every morning to calm your gut, you should able to go "normally" again by the end of the day with that small dose. Also keep lots of supplies or one of those toilet things in your car. It's amazing the peace of mind -- and body -- that will give you.
Posted 12/21/2008 4:55 AM (GMT 0)
Tried immodium yesterday and today. Yesterday was just a test run while I worked. Today was deer season. Tommorrow is xmas shoppin that HAS to get done. LOL. Immodium worked great yesterday. Took 1 pill mid day and all urges stopped. Had some cramping, but no urges. Today was a little different. Took immodium after first major BM this morning about 5:30. went hunting... still had urges all morning but nothing..... Then about 4 pm... Watch out. LOL. guess I should havefigured that. Since Girl friend and I are helping out at her sons bar tonight, I won't be getting up early. LOL. ( am getting tired of boucing at my age, not as young as I used to be. And with UC, I'm weaker, actually got thrown across bar about a week ago, never happened before.) LOL Tommorrow will be the real test, .. Xmas shoppin this close to xmas. I normally have it done way before now, but with this flare I have been scared. But it HAS to bedone TOMMORROW. so I gues I have to brave it and get it done. Really counting on this immodium. lol.
Posted 12/21/2008 5:38 AM (GMT 0)
You asked for an antispasmotic med. Well, I have Bentyl in my medicine cabinet prescribed by my GI. It is pretty awesome when you are really in pain and personally it helped me a lot and often through very bad spasms. It is fast acting for me, too. It's the only antispasmotic med that I know, so someone else might chime in with more suggestions.

Posted 12/21/2008 6:29 AM (GMT 0)
only problem with me. is I have not been in REAL pain with this yet. I have cramping.... I definately the gurgling gut.. I reallly have THE FEAR. but painnhasn't hit yet. Then again my doc says my pain tolerance might me higher than most. But I don't feel like i've had PAIN yet. am just scared of crapting myself. LOL. sorry, I know everyone seems to avoid that sentance.... LOL but Its my biggest fear.
Posted 12/21/2008 6:36 AM (GMT 0)
LOL, actually we throw that particular sentence around here quite a bit...and it does suck when we have "accidents" in our pants but hey, it's the nature of the beast and you just pick yourself up and carry on, it's not like we don't try to avoid it so never feel shame for it, as humiliating as it is, never beat yourself up when/if it happens.

Feel better soon :)
Posted 12/22/2008 2:43 AM (GMT 0)
Xmas shoppin went okay. I took imodium about 10 am and left house around 11. Have real bad gas all day. Kept me running to bathroom all day, cuz as you know, We just can't trust that anymore. LOL. I was pretty grumpy with bathroom trips and traffic and @#$? people. To many people out there today. LOL. But all day I really didn't have to use bathroom, just gas. Little mucus, Is this normal? will probably ask this tonight in another forum.
Am lucky Girl friend was rally supportive. And understood about me leavin to head for bathroom. SHe got a little grumpy with my short temper, but that could have been just from people and crowds not the disease. LOL.
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