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Ulcerative Colitis
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Posted 3/22/2010 10:06 PM (GMT 0)
I have a question for anyone who is outgoing & have UC. How do you do it? Ever since I was D/X in 05. I hae pretty muched stayed home & always had to wait until the next checkup. It seems like you can't do anything with this condition. I would love to go out, have fun, find a job, go back to school, etc. Everyday I think about this condition.

   Wednesday I go back for a checkup for the 1st time since or 08 & I'm freaked out. I don't know why the dr wants to see me. I won't be eating anything till then. I just really want to have some fun again. Maybe you guys can help me change my mind. can I really do all this stuff despite having UC? I just want to accomplish so many things. someties I wonder when I'm going to have surgery if ever.cry

Posted 3/22/2010 10:17 PM (GMT 0)
I have to be outgoing and assertive to do my job! And I have to work to achieve what I want.
Yet I certainly could not ignore my gut problem and was aware of it every hour of every day.

There are a few activities I gave up on because they made me anxious -- like picnics -- but I still have enjoyed life and been successful. I play a lot of golf and have a 15 handicap, which isn't too bad. I just have to check in advance to know where all the restrooms are!  I don't even tell anyone except immediate family that I have UC. Even though I suffered a lot over the years, I keep it to myself.

Why do you think you can't you do anything? You might benefit from some counseling. I am not judging, I know it is a challenge.
Posted 3/22/2010 10:24 PM (GMT 0)
HI ToughKicker..
Hope your keeping well,,
I see your in remission! - well for some..lol - GREAT to see your doing well.. I'm also on Azathioprine 125MG per day and have been diagnosed UC lower left side (and a little right also) lucky me!

I just try my best to not let this disease get the better of me, yeah I have my bad days and I also have my good days .. this makes it a little more difficult/challenging for us, dont you think?!

I currently run my own business, and have been for a few years.. And yes, I also take myself out on card nights, night clubs (Not so often as Im getting on a bit) nice meals out with my better half.. I think when your in remission, like yourself, you have to get out there and enjoy!!Make the most of it - You WILL have time to sit at home when things are bad and feel down..Right now, It should NOT be for you!

So, chin up my friend! - and get out and enjoy this precious life!

All the best,

M!
Posted 3/22/2010 10:42 PM (GMT 0)
So are you still in remission?

If so, I'm confused as to why you say you can't do anything. I have UC, I'm in remission, and I do everything I did before. Why would you not eat before your doctor's appointment?

It kind of sounds like you haven't been able to accept your diagnosis and move past it. Perhaps counseling would help.
Posted 3/22/2010 10:58 PM (GMT 0)
I dunno, I've always been really outgoing and social even before I was diagnosed. Blame being a theater geek. After I was diagnosed I never really saw a reason to change...yeah, when I'm flaring badly I might leave the house less often, but that is more for practical reasons and I still feel the same need to socialize as when I'm in remission usually.
Posted 3/22/2010 10:58 PM (GMT 0)
Oh I'm fairly outgoing, assertive (learning lots every day) and have hair clients whom I have to please. But, I am able to have a flexible schedule for when I'm not feeling well or flaring. I'm open with most of them.

You should consider to have counselling, for this has been an ongoing issue with you since you came onto the board. I think learning to recognise your own strengths and finding people who you can be encouraged by goes a long way.

What interests do you have? Do you make "dates" with friends to get together for supper or a movie or whatever?

I make brunch/supper dates so that I'm able to stay connected with friends so that I can vent or get feedback or whatever. .... like being recharged.

You're young yet, your whole life ahead of you. Most of us have had many professions or positions in our working years....is there anything you'd like to do?

It's easy to retreat into one's own world of isolation....if it's a short time, that's OK to be able to regain perspective as to what one's next step or change or improvement or whatever can be.

quincy
Posted 3/23/2010 12:02 AM (GMT 0)
ToughKicker:

You can't let your UC control you.  Don't think I don't where you are coming from.  I have had such bad flares where I don't feel comfortable going out at all for the fear I am going to soil myself.  Those times are tough on me and my family.  But you can't or shouldn't hide from the world.  You shouldn't live in fear and guilt.  I am a dentist and I have complete procedures on people all day long.  I also work in the OR at the hospital.  Imagine doing a 2 hour case when you feel your bowel start to growl.  But I have learned to adapt in many ways.  One is you have to change your mental outlook.  It's auto-immune.  None of us did this to ourselves.  Second I have sometimes packed a spare change of clothes just in case, etc...  More importantly surround yourself with supportive people who understand what you have.  I am very open with my friends and family.  Those that care for you will understand, those that don't never cared at all.  Just some thoughts for you and what has helped me.

Posted 3/23/2010 1:04 AM (GMT 0)
Toughkicker, are you still flaring? If not, perhaps your doc just wants to see you since it's been a few years.

I sound like a broken record in my posts lately, but I'm newly in remission after battling a terrible left-sided colitis flare. I realize everyone reacts differently to treatment, but have you tried Rowasa enemas for maintenance? They've really helped me - and for most using them is simple and painless. (I swear Rowasa is not paying me - I'm just really happy to be in remission!)

If you're in remission but afraid to move forward with life for fear that another flare will eventually get in the way, I'll bet you'd surprise yourself with how well you can actually handle new situations. Just go one day at a time. I'm sure new medicines are in development that will eventually keep all of us more comfortable. Keep the faith!!
Posted 3/23/2010 1:07 AM (GMT 0)
I was dx'd in Dec 1999, and the first 2-3 years were absolutely like solitary confinement. I am in remission now (for the most part :-). I have once again started working out 3-4 times a week, am a Nursing student, work full time at the hospital as a Nurse Assistant, and play drums and sing in a band. I am really outgoing!!!...you have to find a way to continue on, it can be done, it takes some time and creative thinking at times. Good luck !
Posted 3/23/2010 1:29 AM (GMT 0)
I'm in remission; so I have no problems going on outings. When I flaring badly, I wore a pad.
Posted 3/23/2010 2:29 AM (GMT 0)
Get out there and do stuff! Start out slow if you have to. Run to the store, do some errands, start going out with friends, etc. Get some Bentyl or something in case you get crampy, and if it happens, just relax. When it happens to me (ALWAYS on the bus) I just breathe slow and shallow until it goes away.

But you may need counseling too, I don't know. If you think so, definitely do it.

Good luck! Come out and be happy!
Posted 3/23/2010 12:24 PM (GMT 0)
I agree that some counseling might help. I have always been outgoing and I do not let having Uc stop me from doing the things I enjoy. Sure it can be a challenge especially when I am flaring and yes I have had to cancel a few things. But when I am feeling good, I enjoy everyday as it comes. I live in the now not the fear of the future. I use the old cliche of a saying: One day at a time.
Posted 3/23/2010 1:34 PM (GMT 0)
I have been in remission since feb 06, & I always wondered when I'm going to flare again. Since stress caused my last one, I get stressed farily easy. I also like to get back to doing Martial Arts, join a gym, & go out to clubs, but since my immue is supressed I worry about getting sick, my hands have taking a beating from so much washing. Last time I went to the Dr. he mentioned colonscopy even though I had one in 07, & I"m still paying for that one. It'll be another year or 2 before I finally pay that off. And I really don't like the medicine they gave you that makes you dizzy, I told them that, & I still got it. Just taking about gives me flashbacks. I was hoping I would be doing stuff b4 I had another one. So on March 25 I'm going to look for a job regardless.
Posted 3/23/2010 2:31 PM (GMT 0)
Toughkicker,
Please find someone to talk things out with.
Since my diagnosis - and since dx with pancolitis - I have taken up horseback riding (not doing it right now because of arthritis, but that's another issue). voice lessons, have given voice concerts, have conducted choir concerts, I lead church services, give sermons, have gone hiking, sailing, canoeing..... I just don't let UC impact my life, and I guess I've often not been in "true" remission - if I go 4 times a day but it's on a somewhat regular schedule, I just take my meds and ignore the UC all together!
Yes, I know where every bathroom and outhouse within 20 miles is located, but so what?

I would ask you not to let UC stop you. It's a bummer, but for me, anyway, it's not impossible to live with - and if it is, then there is surgery, and so many who've had that are so pleased with the results!
Posted 3/23/2010 2:32 PM (GMT 0)
And - PS, actually, I'm not particularly outgoing; in fact, I am rather shy. :-)
Posted 3/23/2010 5:23 PM (GMT 0)
I really do urge you to seek counseling. It sounds as if your UC is in a nice remission, so you really should go out and enjoy life! Everyone has something that they could let hold them back, if they chose to, whether they have a chronic illness or not!
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