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Ulcerative Colitis
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Posted 11/24/2012 12:25 AM (GMT 0)
Hey all,

I have had UC for the last 12 years and pretty much lived with it in private for those 12 years. I have flars 3-4 times a year from a couple weeks to a month or so. Treatment is Asacol all the time and Pred when I flar. But what I really want to say is %$&#$ I am sooooooo tired of this! I just came back from a work course where no one knows of my condition and I am in flar up, blood, mucus and urgency:( I just try to quietly slip away every hour or two to take care of business. This has been my life for so many years. It is really starting to ware on me. Don't get me wrong I still mountain bike, rock climb , scuba, motorbike but I have started to stop doing these activities with others as it is easier to stop and deal with a BM by your self than to explain all the time or feel the embarrassment of saying yes I need to stop again.

Sorry for the rant I just need to through it out there. Thanks for listening:)
Posted 11/24/2012 12:38 AM (GMT 0)
I feel your pain!!! Even in remission i find that UC has changed what jobs/tasks i take on. I treat my body as 'fragile: handle with care' LOL. No seriously i don't do long trips and i make sure i look after myself. I used to push push push myself just to do everythig i want to do, like social activities and work etc.

I think if you have been flarig for that long it is time to put your health first and put everything else aside. Whether you try new meds or try managing UC holistically is up to you but sounds like it's time to get into a real solid remission.
Good luck :)
Posted 11/24/2012 2:29 AM (GMT 0)
sounds like you need to try something different -
Posted 11/24/2012 5:13 AM (GMT 0)
Hi V00DOO - sorry you're struggling so much with your UC. It sounds like you have never had good control over your disease. It is not acceptable to me that you've had continuous flares over the 12 years since your diagnosis.

Are you staying on your Asacol throughout or starting and stopping? Have you ever used rectal mesalamine? The retention enemas are a very effective treatment and will keep you in remission. These are much better than using prednisone. Eventually your disease may become steroid resistant! I think you need a better plan than the one you've been using these past few years. I'm glad you found this forum.
Posted 11/24/2012 5:24 AM (GMT 0)
Welcome! Hope you like it here.

Sounds like youve been keeping yours more in check fairly well. Some of us here are constantly flaring. Know how you feel even in remission you still cant ever consider your body normal and you get scared it can go at any minute.
Posted 11/24/2012 2:32 PM (GMT 0)
How do you take your pred when you flare? It sounds to me like you need to tweak your treatment plan.
Posted 11/24/2012 9:52 PM (GMT 0)
V00DOO - I have a lot of days just like you're experiencing. I gave up long distance cycling cause of my UC. Usually play golf by myself in case I need to jump into the woods for a BM. And then there's the interrupted sleep due to urges. It can sure wear on a person. I don't try to hide it from anyone. All my family and friends know I've got UC. When I'm out with folks I just tell them ahead of time I might need to run to the men's room. Even wear an adult diaper at times If I know been having urgency issues or going to be in the car for a long time. I know when my witching hours are so I try to stay close to a bathroom at those times. Food usually sets me off so I know I'm my own worse enemy. There are days that is sucks to be me, but I just try to put it behind me a focus on something else.
Posted 11/24/2012 10:21 PM (GMT 0)
V00D00

I will add my voice that your UC is not under control enough because you cannot live your life the way you want to. You need to stop accepting living like that and speak up to your doctor, maybe find one you feel comfortable speaking up to. Decide that you want a better quality of life and do something about it.

What are your options? Different Rx meds, diet modification, VSL#3, supplements that people here swear help them, surgery. You know you need to make a change, the question is what will you do to help yourself instead of waiting for something to happen and have other people (like the ER) make that decision for you.

Best wishes for a better 2013. Write down what your goals are and how you will make a start to get there.
Posted 11/25/2012 2:04 AM (GMT 0)
Voodoo:

Brother, i hear you! I suffered with UC for 15 years (give or take a few months), and suffered in semi-private......but, the prednisone and other drugs took there toll on me emotionally and physically...I have two artificial lenses, osteoporosis, etc. and I"m just 45 years old. Cool, huh? LOL! I have to laugh about it or I go crazy.

I know you don't want to think about it, but have you talked surgery?

God bless you brother!

jimmy
Posted 11/25/2012 10:21 PM (GMT 0)
Thanks all for sharing,

It is definitely helps a bit to know others are suffering the same issues. That is sad as well that others suffering make me feel better?? That is sick!, actually I think in reality it is that others understand what I am going through and in relativity if I could take on the suffering of all others I would. I do not wish this on anyone! You are all right I NEED to take control and start living my life out in the open and sort this out. I will see my doctor ASAP and let him know what we have been doing is not working I need other options. I accept it is a disease and at this point a incurable disease but it is time to stop living my life with the disease getting in my way and focus on the disease and accept it. I abuse myself by denying it and start diets and treatments but as soon as I see improvements pretend it is not there and go back to what is normal for others. I need to keep up with my meds, pharma and holistic and long term diet changes. I don't necessarily need to live longer but I really want to live healthier longer, enjoy every moment.

Thanks all
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