20+ Years of Ulcerative Colitis

Meet Nettie:

I am a 54 year old living in Paso Robles, California. I am a wife, mother of 3, a new Grandmother of 1 and I work in a fairly stressful job. I was diagnosed when I was 33 years old. I was told after my second child it was most likely hemorrhoids. I suffered for a year of severe cramping, gas,diarrhea, bloody mucus and joint pain. I also had painful ulcers in my mouth. After my diagnosis and started on medication, I was amazed at how much better I felt. I had been in pain so long it was almost normal for me. It was like a huge weight had been lifted off of me. My husband and kids are supportive when I am sick. I trail ride and show my horse competitively on a national circuit.

Symptoms:

Today is a good day, no real symptoms.

Nettie’s Colitis Story:

I have always been very active and I have had UC a long time, I know when I am going to have a flare up because I get extremely exhausted. I usually have 2 flare ups per year. Last year was a good year only one flare up.
This year I have had one so far, it started at the beginning of May 2012, I think it was the physical stress (long days, high heat, little food) along with the mental stress of showing. Over the next few weeks I got sicker ( cramping and bloody, diarrhea) and weaker. I had my annual colonoscopy May 29th, after that I was so weak I could hardly get out of bed. Two days later my daughter had my first grand child I stayed in the delivery room the whole time, it was wonderful. It was another long exhausting day, I didn’t eat so I would not need to go to the rest room as much. I called my GI docs office and he put me on Prednisone 30gm/day. I still continued to drag myself to work. I lost 10 lbs in a week. It had only been a month since the flare up started and was already so sick of being sick.
While searching on line for the side effects of Prednisone I found your site. I bought Adam’s book and read it in 2 days. I was intrigued by the thought of decreasing my symptoms by following a diet. I also bought the book Breaking the Vicious Cycle. I read it and started on the diet and it seems to have helped. I told my doctor about the diet and he said if it works then keep it up. Once I am weaned off the Prednisone he would like me to try probiotics.

I don’t see many people my age posting on this site

and was wondering if others have had polyps removed?

I have been getting a colonoscopy every year for the past 8 years. Prior to that is was every two to three years. In May I had 4 precancerous polyps removed. Is colon cancer in my near future? Interestingly the polyps were not in the location where the flare was occurring.

Where I’d Like to be in 1 year:

I feel I have a pretty good life right now. UC is a part of my life but it does not run my life. In a year I hope I am continuing to enjoy my family, riding my horse, and working. I hope to be on as little medication as possible that manages my UC symptoms completely.

Colitis Medications:

I started on Sulfasalazine when first diagnosed. Then changed to Asacol 2400mg/day. and Prednisone with flare ups. With this last flare up I was put on 4800mg of Asacol and 30mg of Prednisone. My doctor recommended 6MP instead of Prednisone because I have taken so much of it over the years, thankfully he had me take a blood test to find out if I would have the severe side effects with 6MP and the tests showed I would most likely have severe side effects. Prednisone works very well for me but I know I should not continue taking it.

written by Nettie

submitted in the colitis venting area




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polyps

8 Responses to 20+ Years of Ulcerative Colitis

  1. Maggie July 23, 2012 at 3:58 pm #

    Hi, Nettie. I am a 61 year old. I also started getting symptoms of colitis when I was in my 30s but it never got severe until nearly 3 years ago when I quit smoking. My last colonoscopy I had 2 polyps removed and they were precancerous. No one in my family has had UC and my mother had about a foot of her colon removed from cancerous polyps so can’t say for sure if my precancerous polyps were related to UC, most likely not because my great-grandmother died of colon cancer and recently my 41 year old nephew had cancerous polyps and will have chemo for 6 months. So maybe I’m not much help but it sounds like you’re on the right track. I had a 6 month flare that was the worst ever for me that I’m thankfully over. It was brought on by taking anti-fungal medication for my toes so I know not to ever take that again. Good luck to you.
    Maggie

  2. uma July 23, 2012 at 7:41 pm #

    Hi Nettie i am 54 will be turning 55 in two days. My colitis started when i was 32. 20 plus years of colitis. I was taking sulfasalazine and prednisone during flares along with enemas all these years.I must say i was leading a normal life for most of the time except during flares. But for the past two years i have been symptom free. I have added a probiotic, Garden of life Primal defense and folic acid. I must also mention that i take a statin for my cholestrol. I started all these about the same time a couple of years back when i had a very bad flare. I have been symptom free since then. So i dont know what exactly worked for me.I continue to take sulfasalazine 1000mg twice a day, folic acid 800mcg 1 a day, probiotic 1 a day,a multivitamin, and the statin 50mg (tonact tg).I was taking boswellia and sliperry elm i have stopped them now.
    good luck.

  3. Bev July 24, 2012 at 3:59 pm #

    Hi Nettie,

    I have to second what Uma is doing.

    Probiotics! They saved my life. I am now med free and completely symtom free too, since adding a good 50 billion strain probiotic.

    Life is good now!

    Cheers,
    Bev:)

  4. Nettie July 25, 2012 at 1:54 am #

    Thank you all for your information. I just had a doctor’s appointment last week and he said the polyps were not in the same area as the flare up and were not related to UC, he did say if the precancerous polyps were in the same area as the UC he would recommend removing the colon because it can be a more agressive form of cancer. He also put me on a probiotic VSL#3. I am also on Folic Acid. Thank you again and good luck to you all, Nettie

    • Bev July 25, 2012 at 9:49 am #

      Great!

      What an AWESOME doctor!!

      Cheers:)

    • Bev July 25, 2012 at 9:50 am #

      Great!

      What an AWESOMW doctor!!

      Cheers:)

  5. k.colney September 3, 2012 at 11:07 pm #

    hi thank God i meet pple here to share m uc with,in india doctors never gv us too much of medication thy startup wt lesser mg thn upgrade if only required coz allopathy has side effects.doctor used to advice to continue whole life but whn i m free fr any bowel problem hv normal motion n once a day i stop m medication no matter if i tk full yr or few months m medicine,m uc flare up only once in two or three yrs iwas dagnoised whn i was 16,now m 34 once whn i cm bk fr cruiseline (worked tgr 2006 )iwas in icu i gt remission in 2008,but ok within two weeks.in 2009 i cant evn lift m head n in both cases i was given remicad n i recover within 24hrs i was given avil jus bfor thy induce ds iv,but then later i tk mesalamine predniselone,n vitamins, … fews days bk i gt flare up n since three days only blood n now i tk mesalamine 1.2mg n providac only fr lastnite n read about ds siite n gt more positive n prayer miracle today no stress of bloody motion in d two occassion i passed m motion. well nattie to comment i always endup writting m storys m realy sorry im too excited abt ds site,dont tk stress n eating right n family support is definetly d best way to live wt uc,do breathing excercise i hv choosen m career as yoga n fitness instructor as it strengthen u n u cn go to jogging n practise yoga breathing n posture excercise evn in ur office chair

  6. k.colney September 3, 2012 at 11:11 pm #

    oops mesalamine is 1.2g once a day

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