Any Positive News?

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Jules77
New Member


Date Joined Mar 2005
Total Posts : 13
   Posted 5/7/2008 2:33 PM (GMT -6)   
There is a lot of talk on this board about how bad this disease is etc. and I totally understand that because I have UC and have had it for over 10 years now.  I have only had 4 flares that have lasted a month at a time and then I go in remission.  I typically don't take any medicine even though I'm suppose to as I feel that it makes my symptons worse and I get freaked about what it's doing to the rest of my body but here's my question:
 
Does anyone have any good news about how they have lived for so long with this disease and have lived a semi normal life with it?  I seem to get more depressed when I come to this sight sometimes because I feel like I'm in for doom and that I'm going to end up with either colon caner or I need to get my colon removed etc.  It actually scares me!

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 5/7/2008 2:43 PM (GMT -6)   
One thing you need to take into consideration...most of the people posting here are suffering or having problems w/ their UC. The people that are in remission and out enjoying life rarely post!

I have had UC for almost 3 years. W/ medication I am in remission. I live a completely normal life. You hang in there.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 5/7/2008 2:56 PM (GMT -6)   
Sorry for the doom and gloom. Actually, I have had UC for 12 years and I have 2 healthy children, I have traveled and worked and lived a pretty "normal" life. I don't worry too much about cancer because I get checked regularly and if I do get it, I'll just get everything out. Another good thing in your case is that you said you have a pretty mild case. I read that usually the severity of disease stays the same, so if you have it mild, then hopefully it will stay that way.... not such good news for me, though.

I think it's funny cause when I go on here, I am like "Man, everyone is doing so well!" I guess it depends on your perspective. I guess if I had first gotten diagnosed and read some of this, it would have worried me. But it would have been good to know more of what can happen. Knowledge is power. The main thing to remember with this disease is that everyone is soo different. Some people swear that eating garlic keeps them in remission, others are on strict diets and doing great, others eat whatever they want and are in remission, some swear by doing sit-ups right after eating, others had to get their colon removed... I think that's why this darn disease is so hard to treat! It's so weird.


Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 5/7/2008 3:53 PM (GMT -6)   
I don't know if you'd call it good news, but I think living with UC makes one appreciate the good days... I am not considered a "mild" case, I'm considered refractive. I do ok with Remicade, not great, but I'm getting by for now. I know what you mean about the doom & gloom- sometimes I feel the more time I spend on the board, the worse I feel....I know for myself, when I'm thinking constantly about my UC, it tends to act up- like, when I'm out in public & I think "What if I have to go to the bathroom?!?!"...guaranteed, I'll have to go in about 10 minutes! Whereas if I forget about it, I'll notice "Hey, it's been 3 hours since I went to the bathroom!" I just don't, I cannot, will not, let UC rule my life- yes, I take daily meds & probably will forever. Yes, I may wind up with colon cancer- but I don't sweat it now- I go for my regular scopes & such & if anything ever turns up, well then it does. Sure, my colon may be surgically removed- but until that day, why think about it now? Let it go... what happens, happens. I try to live every day like that- if I have an accident, so I have an accident, no big deal. Some days are good, some are not-so-good. Like anything else, you know? I still go out with my family, I'm still the same person. It took a while for me to get to that point though.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 


malka
Regular Member


Date Joined Apr 2006
Total Posts : 171
   Posted 5/7/2008 4:16 PM (GMT -6)   
I have had UC for over 30 years and have had a normal life. I had a relatively mild case until 15 years ago (not coincidently when my father died). Then in the spring and fall of 1997 had a terrible time, hospitalized for two weeks, etc. Since then, I have had only minor flares.

I don't think of myself as a sick person but am aware that I have a chronic illness. I am now at an age that I have had friends die of cancer. It puts things in perspective. I recently retired, but before that worked full time and raised two children.

UC affects everybody differently and some people have it much worse than others. Many of us, however, have long periods of remission. I remember at my lowest point reading somewhere that UC was a chronic, but not fatal, disease. Well, if it isn't fatal - then you learn to live with it - and you learn to manage it. Don't despair. For me, the most important thing is to not be in denial. When I begin to flare, I try to take action immediately, before things get bad.

Good luck to you.

M
Diagnosed UC 1975. 
Azulfidine Entabs 500 mg. 4 twice a day
Azathioprine 100 mg per day
Colocort - as needed
Folic acid, vitamins C and D, multivitamin, metamucil, fish oil, turmeric 
 
Hospitalized 1997 - intravenous cyclosporine.

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