Stay Motivated

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Apetro
Regular Member


Date Joined Aug 2008
Total Posts : 95
   Posted 10/17/2008 1:55 PM (GMT -6)   

How do you all stay motivated? All of us with UC have our ups and downs, this week I started to flare up again as my predinsone dosage dropped (thankfully the worst is over).

For me I know that even with UC I’m still going to do the things in life that I want to do, medicated or not. I know that this disease strike each one of us differently, but I still try to maintain hope there will eventually be a cure. Who knows what science will have for us 10 years down the road?

 

I refuse to let this disease stop me from what I want to accomplish.

http://www.youtube.com/watch?v=2rePt-O2gLI

 


http://asilentocean.blogspot.com/  -> My blog
 
Diagnosed 7/27/08
 
Prednisone 20mg/day


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 10/17/2008 3:58 PM (GMT -6)   
I think you just sort of have to accept that this disease and most of the current treatment options for it suck, but that you can't do much about that. I used to "vent" all the time in the belief that it helped. What I finally realized was that, for me, complaining a lot only makes me spend more time feeling sorry for myself than living. So now I don't do that. Yeah, it sucks. Yeah, it isn't fair. Why me? Why not? It is what it is, and I just had to learn the best way for me to live with it, which risks or inconveniences to take. I learned to pick between my real options, and put aside "not having UC any more", which isn't an option for me.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/17/2008 4:18 PM (GMT -6)   
I've learned a lot more that has helped in the last year. Manage it, not cure it, but it allows me to do more. I think understanding what makes a colon healthy or not is important, and I'm eating up that kind of info from my naturopath. But there just is no cure for many health problems, and medicine isn't an exact science.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, now Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 10/17/2008 4:29 PM (GMT -6)   
What else can you do but stay motivated? I suppose one could curl up in bed & stop going out of the house, stop living life basically, but I don't know that you'd feel any better. Accepting that you have a chronic incurable disease is extremely hard- like you,
I too think that maybe 10 years down the road there might be a cure. However, I'll be lucky to have my colon in 10 years! If any more bad flares start up, I'm at the end of the drug road. If I develop dysplasia, see ya colon. I think the hardest part for me was realizing & coming to terms with the fact that yes, I do need to be aware of where the bathroom is wherever I go. And yes, I will have the occasional accident on a really bad day. And yeah, sometimes my UC prevents me from doing what I want to do on any given day. But I have a child, a job, friends, a life...I'm not able to quit on those things. So I just deal with it. You can't question it too much, there are no answers. Yeah, it totally sucks...but it's a heckuva lot better than HIV, or cancer, or any other awful things that could happen. You do learn to manage it, thru diet, supplements, meds, etc. I don't think any of us will ever be 100% again, like we were "before". And when I was finally able to accept that, I found it to be extremely liberating. That alone made me feel better than anything else! Plus, education is everything- when surgery was a very real possibility for me, I spent a lot of time on the ostomy forum & meeting with surgeons. And I came to realize that people with ileostomies or j-pouches live a very normal life. It was confronting my worst fear in UC, & seeing that it's not so bad. Right now I feel crappy, have caught some sort of head cold & my UC is so-so... tomorrow we will be out all day at a Harvest Fair, for my daughter's birthday. I'm already wondering about bathrooms, as I ate a lot today. So the morning will be rough, if I have to take some Immodium I will, & I'll smile & go out for the day.


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 

Post Edited (Eva Lou) : 10/17/2008 4:35:14 PM (GMT-6)


mh53mike
Regular Member


Date Joined Aug 2008
Total Posts : 149
   Posted 10/17/2008 6:44 PM (GMT -6)   
I stay proactive with my disease and learn and read books about it and beyond it. I changed my diet and stopped eating all the crap that most americans eat daily, I try to help others and offer solutions rather than ***** about it 24/7. I exercise, i am gainfully employed and maintain a socail life and contribute to society. I believe that i can beat the disease. Those all help me stay motivated ecspecailly the last one motivated. I am not concerned out medical research, although is good, the most they will come up with in my lifetime is more drugs that supress your immune system but doesnt cure anything. As soon as the start looking back into probiotics and natural cures i may be interested.

I have my bad days, who doesnt. But if you let this disease own you, then you arent going to get any motivation. Motivation starts with you, you can either take every pill handed to you and ***** 24/7 about your ailments or you can take some pills and be proactive and make changes in your life before its too late. If you accept that your defeated by a chronic illness then you are just that, and some people do. Others may believe that this is a beatable disease and get very proactive with it. It depends on what kind of person you are.
26y old male medically disharged USAF veteran.Diagnosed with UC (lower proctitis) in 2004.
 
Current daily treatment:                               Probiotics & supplements:
2400mg oral asacol                                      Digestive enzymes
                                    50 Billion CFU's acidopholis&Bifidobacterium daily
75mg azathioprine                                        folic acid & calcuim with V-D
20mg Prilosec                                          VSL#3 450billion bacteria packets
 
Diet:Little/no sugars, fats, carbs, caffine,yeast,breads,alcohol. Stay natural as possible.  
 
Results:1 Bowel movement in the morning no blood! Remission since 08Sept08


lambkins
Veteran Member


Date Joined May 2008
Total Posts : 574
   Posted 10/18/2008 7:54 AM (GMT -6)   
I think for the most you just have to get on with life, i have 3 children 17,10 &5 a busy job and have just started to help out at my youngests school 1 morning a week although i agree that some days all you want to do is lock the door and curl up most of the time you don't or can't i do try and have a rest most afternoons before picking up the younger ones from school but i will not let this DD beat me and try to keep family life as normal as i can smile and the world smiles with you.
  
  Diagnosed 22.5.08 with Lft sided U/C
  Meds Predfoam 20mg 2x day stopped started Mesalazine supps 1gm 26/6/08
  Mesalazine 400mg 4 tabsx2 day
  Domperidone 10mg as needed

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