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Regret letting colitis control me.

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Ulcerative Colitis
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Posted 5/3/2015 6:31 PM (GMT 0)
I've had colitis for about 10 years now and feel that I have pretty much let it control me the whole time. I find myself with no social life, no career, living with my parents, not really doing anything with my life. I always say, oh I'll do that when my symptoms are better because I don't want the stress of worrying about an accident. What happens is years keep going by and my life stays the same. Has anyone made the conscious decision to NOT let colitis hold you back. Or does anyone regret letting the fear of a accident stop them from living their lives?

When I think of it... an accident isn't even that big of a deal! I can't believe I let fear hold me back so much. Can anyone relate? I just wanted a place to vent! Thanks.
Posted 5/3/2015 8:20 PM (GMT 0)
I would say the majority of peeps are in your shoes. I am one of them. I am 2 years in and have basically reduced my life to a crawl, working part-time and barely socialising, all in the interest of focusing on getting well. So far I have had no luck, but just started Remicade and am feeling encouraged.

For me, its not only about having accidents: its the discomfort, the gas, bloating, and especially the anxiety that comes hand-in-hand with it all. I just can't relax in "unsafe" situations which leads to me not being myself. And if I can't be myself, I don't really want to be around others anyway. I guess it depends where you are and what you're doing at the time but for me an accident is kind of a big deal.
Posted 5/3/2015 8:34 PM (GMT 0)
I have had it for 35 years.
I believe my colon has a brain, for instance it knows when I want to go out.
It knows when I am out.
It knows when there is not a bathroom around.
It knows when I get into a car.

Actually it even knows when I am about to get in a car.
It for sure knows when I might eat a Whopper, it gets so mad I have not had one in about 20 years.
Old Mike

Posted 5/3/2015 9:05 PM (GMT 0)
What uc medications are you on?
Posted 5/3/2015 9:09 PM (GMT 0)
I have to keep going because I'm too big a chicken to tell anyone about my UC. My husband and my doctors know but that's it. I'm too embarrassed to tell my co-workers and I don't dare tell my Mother! My Mother worried my Brother to death over his epilepsy. I know she meant well but she would never allow him to have a normal life. I've had UC for over 20 yrs and I hope I never have to tell however, remission is getting harder and harder to achieve and I may run out of luck.
Posted 5/3/2015 9:27 PM (GMT 0)
I don't know what you've tried for your UC but I can say that I've seen a lot of people who try not to let accidents get to them and usually, eventually they do. It's just frustrating to be unable to get to the bathroom and people are judging, not that you should let other people's judgments change how you feel about yourself. I, personally, feel like if I am having regular accidents and I am unable to live my life, i would probably have surgery. I think I'd rather have a pouch or even an ileo if it meant i could go out without fear of ruining my car seats, or worse a friend's car seats.

peach, i don't tell my parents either. Not for the reasons you state but because everything is not serious to them, they would definitely downplay my issues. They have also always used me as a topic of conversation with friends and relatives. I don't want people talking about my GI issues. it's not appropriate information to talk about.
Posted 5/3/2015 9:44 PM (GMT 0)
When I was in the grips of a pretty good flare, I would still go to work (with a change of clothes) and go about my normal day. Go to the store when needed etc. I usually would just not eat anything until I was done shopping. At work I ate, there was a bathroom close and everyone knew about my UC.

However, I didn't really want to go out to dinner or the movies. Much more public places worried me.

Now in remission I do not worry about any of it and I know I'm lucky. I'm taking advantage of it while I can because you just never know what tomorrow will bring.
Posted 5/3/2015 9:48 PM (GMT 0)
The best way of getting your life back is to get your UC under control. It sounds like you have been preferring to run up the white flag and let UC destroy your life. What treatments have you been doing?
Posted 5/4/2015 12:17 PM (GMT 0)
This last flare has led me to the bathroom every 20 minutes. I basically told my job that either I step away when I need to or I won't come to work. They were understanding. I didn't really eat anything at work that I knew would be a problem.

I know this is really hard to do but each day I would get up and say: it's going to get better, it's going to get better, and it has. Also, my dog is my support system. He's the most loyal and understanding soul that I know. He doesn't judge, just stays next to me patiently.
Posted 5/4/2015 4:03 PM (GMT 0)
CanMan,

This is a great place to vent, vent away, we likely all know to some degree (some more than others) what this disease does to every aspect of our lives, most of us develop anxiety and depression because of what the DD does to us and no one understand like we do about how IBD can affect every single aspect in your life that we and others supposedly took for granted..sometimes I really don't like that expression cuz it makes one sound like they didn't appreciate what they had before getting sick when that's not necessarily accurate, I mean how are you suppose to show how grateful you are that you could wear high heels but had to stop due to running to the toilet in public places??

I absolutely regret getting IBD (and IBS) and how it affected me so negatively and my family too but there's nothing I can do about it, just like back 24 years ago when first getting sick, can't change it, just have to learn how to cope. Besides, there are people that don't even live with IBD and I'm sure they have many regrets in their lives too.

I think life is how you perceive it and the good thing is, we can change our perceptions of life whenever we want to.
Posted 5/4/2015 5:18 PM (GMT 0)
UC was definitely controlling my life that's why I made the decision to have j pouch surgery five years ago. Best thing I ever could have done. I beat it!
Posted 5/4/2015 5:27 PM (GMT 0)
Fortunately, I've not been in the situation where it's controlled my life. Since diagnosis, I've been on meds that have dealt with flares and maintained good state.
I have a lot of other stuff to deal with that I've adjusted my life to accommodate.

I also don't have a desire to do many things others have, so it's also subjective.

I've not had accidents in public, or even functioned in that way. If I did, surgery would have been a decision made long ago.

What meds are you on?
What supplements are you taking?

q
Posted 5/4/2015 8:10 PM (GMT 0)
Yeah, you know everyone has "their cross to bear." Be it colitis, being crippled, and on and on. I actually thought my cross to bear in life was being gay, which actually is a really huge cross to bear...until colitis came along! Then I thought, oh boy if I thought being gay wasn't bad enough, now I have a stupid health problem on top of it!!!!

I've been dealing with both pretty well, and I can't really say which one is worse. I've been pretty shy and not very social my entire life so I can understand that point of view also. Fortunately I work with several people I can open up with about my life and that helps immensely. Oh...coffee helps a lot too! hahah

Good luck!
Posted 5/5/2015 1:19 AM (GMT 0)
I know how you feel! When my standard of a "good" day at work became returning home in the same clothes I left in (i.e., didn't have to change due to accidents), and then I was failing that, then I knew it was time to throw in the towel and opt for surgery. I basically couldn't leave the house without having an accident, so I basically stopped leaving the house. Surgery had to be postponed last week due to a pulmonary embolism, so now I feel grateful to be alive. But I still can't wait for my surgery so I can get healthy again and get my life back. This disease robs us of so much.

Can you move to a stronger level of meds?
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