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Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 5/10/2009 11:03 AM (GMT -6)   

Just wondering if there is any good life stoies around here. Just wondering if anyone wakes up with no pain. Goes to work and comes home feeling ok. Is there any? And if so are they doing anything to help with living with UC.


Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1/2 X 500mg pentasa in the morrning= 250g pentasa (I reduced this to see how my diet will effect me) and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 5/10/2009 12:23 PM (GMT -6)   
My initial flare was the worst ever, lasted a year. Never went to the Dr. Then one day, poof! All symptoms went away (without meds!). I lived virtually symptom free for 7 years. Only had a few times when I would get stressed and I would have D for a few weeks then it would go away. Rarely had any pain for those 7 years. It is possible. You can wake up w/o pain and go throughout your whole day feeling fine. I didn't do anything special during that time b/c I didn't know I had UC.

Now that I know that I have UC I take probiotics and fish oil and pred for flares. I think relaxation and positive thinking helps but I feel like I never had any time to myself b/c I have a 3 year old and a 4 month old - one of these days I may even get to sleep through the night!
32 yr old female
Mild Pancolitis
I've had UC since 2000 but was in remission for most of those 8 years med free
Cannot tolerate mesalamine - starting 6mp soon?


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 5/10/2009 8:41 PM (GMT -6)   
Hello Hellokitty.
Yes, there are a lots of good stories out there. The problem is that many people who are in remission for long stretches of time do not go online and look up colitis discussions because they have nothing to discuss. Fortunately, there are a bunch of people on this board who can share remission stories!

Personally, I don't have pain. I go to work. Occasionally I don't feel great at work but I can be fine for months. I've spent a lot of time traveling too. So it is definitely possible to get into remission and have a full life (with just some extra trips to the bathroom and some flares).

It's taken years to figure out which drugs work best for me. I don't know why it took so long but I'm finally in a good place where I can --and just did! -- turn a flare around when the symptoms started.

It helps if you have a great doctor with a lot of patience and good ideas. It also helps to take whatever approach you think works best for you and not worry about what worked for others.

For me, relaxation and the right meds are key. I hope you find what works for you soon! :)
-------
UC for the last ten years
Current Meds: 6MP since 2006, Lialda, Asacol foam, Lomotil
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine, Cortifoam)
Alternative treatments I have had success with: Acupuncture, Hypnotherapy


Consciousness84
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/11/2009 11:08 AM (GMT -6)   
I had UC when I was 15 and was not diagnosed until I was 17. However, I have been in remission since I was 18. I no longer take meds for it or anything like that. I am now 25 years old, I am able to go to school or work but currently I am just going to school. I hope to be a CPA so I can be my own boss and also just in case other manifestations occur.... I don't want to be working for anyone else per se, just myself and my clients. Although I have been in remission for 7 years, I have been having symptoms of other diseases. I go in to see a Rheumatologist next month.

Consciousness84
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/11/2009 11:11 AM (GMT -6)   
I should also add that I smoke cigarettes but I plan on quitting soon. Hopefully this wont cause a flare up. I feel that although its helped me in the UC arena, it's starting to kill my lungs.
 
1. No discussion of any illegal activity or threats of violence. (ie. illicit drug use, including medical marijuana use, threats of suicide or self-injury, or threatened or intended physical harm).  Discussions of suicide or self-harm that are deemed negative and therefore potentially injurious to others are also not permitted.

Post Edited By Moderator (Red_34) : 5/11/2009 12:20:00 PM (GMT-6)


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 5/11/2009 2:39 PM (GMT -6)   

As julee said, there are plenty of success stories, but unfortunately, these folks often don't hang around the forum to share and encourage others. The majority of active posters are those that are suffering and looking for answers.

I suffered off and on for years with irritable bowel syndrome before I was "upgraded" to UC in 1999. I spent two years struggling and was extremely ill. I used that time when I was home so much to educate myself. I read everything on IBD and the digestive system I could get my hands on and collected a library of digestive health books. Through research and trial and error, I found the combination of meds, supplements, diet and lifestyle changes that worked for me and have been in remission, with only a few minor flare ups, for years.

I continue to be vilgilant with my health and diet, but I no longer feel ill, worry about where the next bathroom might be or let UC stop me from living life. I'm in better shape than I was prior to my diagnosis, I eat much healthier, I got out of a bad relationship and remarried a wonderful guy. I got out of a stressful job and found a fulfilling, low stress job that's within walking distance of my home. I travel. I try new things. I have a strong faith and am active in my church and serve others. I workout regularly and I look and feel 10-15 years younger than I am.

My best advice to everyone is to educate yourself on all the options and find the combination of therapies that works for you. It can be done, but you have to take charge of the process.


Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/11/2009 9:37 PM (GMT -6)   
Hmmm, good stories??
I have suffered tremendously with UC, and I mean suffered anxiety, pain, helplessness...but privately. I would assert that my friends think I am tremendously successful, in my marriage, my job, my life...and consider me a role model, hence I have gobs of godchildren (depite the fact I have no children of my own to demonstrate any skill). But they no nothing of this personal stuggle of mine.

I think my personal pride in dealing with this disease with dignity ...humility?... has made me a strong person, and it manifests itself in fearlessness. Fearlessness is a tremendous gift.

That said, this Remicade has my head spinning with the possibilities of experiencing a new normal!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 5/12/2009 7:43 AM (GMT -6)   
I'm in remission but I think I have IBS also so I am not completely symptom free. However, I can honestly say that I do not wake up in pain from my Uc nor do I think about it because it is not bothering me at the moment. I can go to bed and not worry about it either. I don't have to look for bathrooms because of urgency. So yes, there are good stories and like the others have said, you just don't see them on HW because they are out enjoying their life. What you see here are the ones that need answers or comfort.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
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Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 5/12/2009 4:15 PM (GMT -6)   

Thanks Everyone,

 

I am feeling better when I changed my diet. I’m still in a bit of pain though. I hope this will go away, soon. I am taking bee pollen and a probiotic. I hope these helps. I tried raw foods which really helped me get out of my flare but started to make me constipated after a while,  I never thought raw spinach would do that, but I did eat a lot. I think that my next step is stop stressing. I really find this hard, I stress over everything. Don’t know why?


Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1/2 X 500mg pentasa in the morrning= 250g pentasa (I reduced this to see how my diet will effect me) and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 5/12/2009 4:18 PM (GMT -6)   
I'm in remission--no gas, diarrhea, bloating, blood, cramping, urgency... I no longer have to wait until I go to the bathroom before going out.

I do have to be careful about what I eat though--not too much chocolate, not too much decaf coffee, not too much sugar, no foods/beverages high in fructose. And I take probiotics every day. Other than that I'm doing great.

We had chocolate fondue on Mother's Day. It was great!
Joy - 47 yrs and counting
Colitis Dec 06 (also have IBS)
Currently in remission
Don't expect your doctor to cure your health problems. Your health is your responsibility.

Lexapro (for stress), Probiotics and Vitamins (a whole bunch of them)
Avoid HFCS, foods high in fructose, artificial sweeteners
When flaring: eat anti-inflammatory foods, avoid pro-inflammatory foods
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)

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