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Does UC rule your life?

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Ulcerative Colitis
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Posted 1/24/2008 5:55 PM (GMT 0)
Eva, How old are you? So your on imuran AND remicade? Im soooo hoping the imuran kicks in soon for me. I cant imagine never having to poop again...ahhhhh bliss! haha
Posted 1/24/2008 6:03 PM (GMT 0)
I think there are pros and cons to both sides (having your colon or not), it's a very individual and permanant decesion to have your colon removed but unfortunately for many they have no choice.

:)
Posted 1/24/2008 6:59 PM (GMT 0)
I'm 37, will be 38 this year. I have one child & my UC started up immediately after her birth. Keith (I forget his post ID) mentioned a very good point- about 40% of UC patients wind up getting surgery. It is a tough choice... it sucks that anyone would have to make it. I still believe though, that actively making that choice is far better than winding up having to have energency surgery, which does happen more often than you'd think.

Posted 1/24/2008 7:09 PM (GMT 0)
Im 38 also and my initial UC flare was immediatley after my first child was born in 1991.
Posted 1/25/2008 2:30 AM (GMT 0)
Crohnie wanting to chime in. I let it start to take over my life, right around the time I had a nasty flare... Then a few encouraging words from a coworker and a trip to a therapist helped snap me out of it. But I do still panic on occassion. Basically the coworker had me go through the worst that would happen, just like someone else already said. The absolute worst is I'd poop my pants in front of everyone, be super embarassed, go home, clean up... but the sun would still rise, no one would die... and that is a WORST CASE... is it worth letting a worst case ruin my life?

So then I started going places alone where I had lots of trees or public restrooms along the way. After I got comfortable with that (so what if I have an accident alone) I started going places with my husband, but I drove. I felt more in control that way. If I wanted to go somewhere w/ friends I just took my own car and drove. Now I can go places w/ friends but I still prefer to drive.

Whoever said they are going to Ireland soon, I just flew to Atlanta and had the same anxieties. A low dose of Xanax really really helped. I am flying to Singapore soon and am already starting to get nervous about meal service but I am insisting on an aisle seat so worse case scenario I just have to climb over my own tray to get out.

Now those that wear diapers... it sounds like none of you have "used" your diaper. I considered them but thought they wouldn't help b/c others would still smell what I did and know what happened. Is that true? Is all they do is contain the mess? If it is such a remote worse case scenario I think a change of clothes would give me just as much peace of mind as the diaper, but I could be wrong. Thanks for sharing.
Posted 1/25/2008 6:05 PM (GMT 0)
First let me say that I am so lucky.  Reading your posts under this subject I recalled how I used to feel all the time. How miserable my days were. Always acting in function of my UC limitations, how long will I have to be away from a toilet. What if...

A little over two years ago I studied what the SCD was about and decided to firmly go for it, fully commited for a minimum of 6 months no mater what the results were.  I know this was the best thing I did for myself. I am in remission. Presently taking no meds. Just eating strickly SCD foods.

For those of you not familiar with this diet I have to say it demands a lot of will power and determination.  That is the may obstacle and not suitable to many.

As simple as that, avoid some foods - always - no exception and your colon starts to heal over a long period of time. It's not a quick fix. It is a process that takes time.

I am not sure how long I will be on remission. But I believe keeping eating only SCD food I will keep my symptoms at bay or at least to a minimum.

Bob59

Posted 1/25/2008 11:29 PM (GMT 0)
Everyone's response sums it up incredibly accurate. I thought I was the only one letting this UC control my life. I do a lot of meditation and alternative medicine because this is a vicious cycle in which the more I stress about it, the worse my symptoms get. I was dx in 2/2006 and have yet to see remission. I can't remember what it is to be normal. I have not been able to work and my husband has had to pick up the slack with the hope that "soon" I'll be better. We are both very athletic and love the outdoors. I miss it although I have made it a point to at least take short walks. My marriage is on the verge of a divorce and i have 3 beautiful small kids. This is no piece of cake BUT my new inspiration was the last biopsy my Dr. sent to check for cancer was NEGATIVE! I have to continue to have hope for me and to be here for my children with or without my colon and with or without a husband. I enjoy the better moments, I know others live with greater challenges. So to all, we are not alone, thank you for all being honest and open. How do I cope with my husband?


31yr old dx 2006 lt sided UC
tried asacol, canasa, 6mp, enemas
currently starting imuran and Feb. first Remicade infusion
only respond to Pred.
Posted 1/25/2008 11:58 PM (GMT 0)
I am approaching the 2 year mark of having symptoms of UC and I look back on the 2 years and say "Wow! Two years? That is a really long time". I totally do not see how people deal with UC flares everyday for 5, 10, 15 plus years. I consider myself "tough" (or use to, I guess) but I totally cannot see me doing these flares for years to come. I have allowed UC to take over my life, literally, in the past 2 years. I have been in a flare 90% of the time but steriod dependent so I have always been on prednsione. I would have never thought that I could come to terms with surgery but I have opt'd to do surgery b/c, for me, I feel like UC is effecting my quality of life. IF I thought that I could get off predsnione, well, then I think I would continue to challenge beating UC but it has proven to me (time and time again) that I can't get off prednisone. I think that it is so sad to hear so many sad stories of people that struggle SO incredibly hard with UC. It not only takes over your colon and health but it literally takes over your mind. I just really cannot see me feeling sick and settling to feel sick for years to come. I find it terribly exhausting - mentally and physically and I am very anxious to have it be over.
Posted 1/26/2008 4:31 AM (GMT 0)
I've been flaring with my crohns-colitis for 16 yrs straight to some degree (for the most part, severe), you just take it day by day, you really have no choice.

:)
Posted 1/26/2008 5:49 AM (GMT 0)
BOB59 I also did the SCD but for 3 months. I started it while on steroids after a bad episode but had lots of faith that after weaning off the steroids I could just maintain on the diet. That was 3 months ago. Then 1 wk ago I started with a fever x7 days ended up bleeding a bucket full with little warning and now I am back on steroids (which is the only med I respond to) started on Imuran and Dr. has me scheduled for Remicade in Feb. I REALLY had faith in the diet, I was off the steroids for approx 2 wks before I got bad and only on the diet very strictly. When did you notice a difference with the diet? Did you get off the meds immediately or wait? you are giving me some hope to try again. I gave up after I got bad. But I was already adjusted to the foods and so was everyone around me. What do you think?
Posted 1/28/2008 11:53 PM (GMT 0)
I am also tired of UC controlling my life. Right now I am doing real good. I haven't had an urgency in about 3 months but I still can't get the fear out of the back of my mind. If I even have a rumble in my gut, I stop in fear of not getting to the bathroom on time. I have also contemplated  surgery. I have made up my mind that I flare again that I am getting it out. I am tired of not being about to do things with my sons out of fear of having an urgency & not making it.

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