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Ulcerative Colitis
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abw1001
New Member
Joined : Jun 2008
Posts : 11
Posted 6/2/2008 1:55 AM (GMT 0)
Can anyone tell me how long an "episode" typically lasts? Just diagnosed with ulcerative colitis/protcitis, I have read the ccfa and mayo clinic sites, but not enough answers.
mbx5
Regular Member
Joined : Sep 2007
Posts : 365
Posted 6/2/2008 2:04 AM (GMT 0)
It varies for everyone. What meds are you on? Are you on prednisone? Stress and diet management are important. Lots of info here. I have had this 14 years and havent gotten a full remission yet. Some have responded well to their treatments. You found a good place for info!
abw1001
New Member
Joined : Jun 2008
Posts : 11
Posted 6/2/2008 2:23 AM (GMT 0)
None! My doctor gave me the news over the phone, told me to do some research and schedule an appointment for follow up. The nurse was supposed to call in a prescript
ion on Friday, guess what, never hapened. Meanwhile I am bleeding daily, exhausted and in pain. I called the service to ask that he fill whatever script
he was talking about
, and he never called it in.
33 yr old female. UC/P diagnosed May 30, 2008
pb4
Elite Member
Joined : Feb 2004
Posts : 20577
Posted 6/2/2008 2:28 AM (GMT 0)
WOW, I'd find a new doc if possible, what a jerk! Asacol, imuran and other 5ASA meds are likely on the horizon for you as well as rectal meds to aid with the proctitis...the sooner you can get on meds hopefully the sooner you'll start to feel better.
:)
abw1001
New Member
Joined : Jun 2008
Posts : 11
Posted 6/2/2008 2:29 AM (GMT 0)
Thanks! Looking forward to it.
expecting226
Regular Member
Joined : Jul 2007
Posts : 402
Posted 6/2/2008 2:37 AM (GMT 0)
"Episodes" last different lengths of time for different people. Even for the same person, each episode can last a different amount of time. One thing you will learn about
this disease is that nothing is consistent.
That being said, keep your chin up! Many of us respond well to treatment. For me, I am able to maintain long periods of remission with mesalamine medications (Asacol and Rowasa). When I do flare (only 4 times in 5 years), I use short tapers of Prednisone to get back into remission. The Prednisone usually kicks in after 2-7 days, and I feel better right away.
Good luck in your research on the disease. You have been to two of the best sites out there - Mayo and CCF. This board will help you as well - it is a phenomenal resource.
abw1001
New Member
Joined : Jun 2008
Posts : 11
Posted 6/2/2008 2:42 AM (GMT 0)
Thanks for the info, I am trying to figure out how this will affect my life long term. What do you do about
work when you have a flair? I don't even know where to begin.
expecting226
Regular Member
Joined : Jul 2007
Posts : 402
Posted 6/2/2008 2:56 AM (GMT 0)
I have never had to miss work for a flare. Fortunately, I have a desk job, so I can do what I need to do, when I need to do it. When I am feeling bad, I find that work has a way of taking my mind off how ugly I feel. So, I don't mind going in to work when I am flaring.
I refuse to succumb to this dumb disease. I just won't give in... I won't let it win. I go about
my life as if I were the healthiest person in the world. Don't get my wrong, I don't ignore it. I take my medications religiously and otherwise try to take good care of my body. I see my GI every 6 months, regardless of whether I am flaring or in remission.
The key, for me anyway, is to monitor my symptoms closely. You will feel better when you achieve remission. Then, you keep an eye on things. As you feel yourself sliding into a flare, you learn to nip it right away. The earlier you can catch a flare, usually, the easier it can be to treat it back into remission.
mbx5
Regular Member
Joined : Sep 2007
Posts : 365
Posted 6/2/2008 2:58 AM (GMT 0)
Were you diagnosed with a colonoscopy? Is your doc a GI? I recommend finding a new one in your area regardless...most would have started you off with some aggressive treatments such as pred or asa, etc. I am floored they didnt call in a perscript
ion..?!
Work - that is all over the map and really depends on how severe the flair, and what you do for a living. Some work places are tolerant. Some jobs cannot be. Some flairs are too extreme to get out of bed and away from a toilet.
Long term - all depends on getting into remission. Again - this board is the most informative place I have found so far. Lots of great people that have been through it all. Ask lots of questions, do lots of reading.
abw1001
New Member
Joined : Jun 2008
Posts : 11
Posted 6/2/2008 3:23 AM (GMT 0)
Yes, I had a colonoscopy last Tuesday, and he is a GI. I have had a problem with his nurse before, very rude, she was supposed to call it in originally. I will call again tomorrow morning. Thanks for all of your help.
Bigphule
Regular Member
Joined : Dec 2007
Posts : 137
Posted 6/2/2008 3:40 AM (GMT 0)
ABW remember you're the patient. They are there to take care of you. You need to be polite but firm because after all it is your life their lack of consideration is effecting.
Tell the GI about
your issues with the nurses. Communication is important, don't be afraid to voice all concerns with him/her.
dakotagirl
Veteran Member
Joined : Apr 2006
Posts : 3402
Posted 6/2/2008 1:54 PM (GMT 0)
ABW - welcome to HealingWell! Glad to have you, but sorry you had to find us.
I would suggest this book: The First Year: Crohn's Disease and Ulcerative Colitis: An Essential Guide for the Newly Diagnosed by Jill Sklar. She has Crohn's and there is a lot of information in this book that you won't get from a doctor.
Yes, keep calling the GIs office. They should answer any and all questions you have. Kindly remind them to call in your rx and keep calling until they do.
Proctitis should be treated with rectal meds. No, they aren't fun, but they work by getting the meds directly to the inflammation.
I also recommend reading through old posts. There is a huge amount of great information in them.
love4cats
Regular Member
Joined : May 2007
Posts : 458
Posted 6/2/2008 3:22 PM (GMT 0)
I too have proctitis and Salofalk (5ASA) suppositories work very well for me. If the inflammation is contained only in your rectum area oral meds won't be of any assistance according to my GI.
My first flare was about
7 months (no meds)
Year later, my second flare was 1 month, very painful.
Year after that, my third flare, started on meds and lasted a couple of weeks.
I seem to flare every spring when the snow starts melting.
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