Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Every Step Out of the House is a Blessing!

Introduction:

I’m a 40 year old male, living in NYC, soon to be married in Jun. I was diagnosed in December of 2012, just 4 months ago, and had been living my life with fully normal bowel movements.

Some more about me:

I play guitar, love to fingerpick. My girlfriend and I love to watch marathons of shows, i.e. Justified, Dexter. I love reading Steven King novels, and we love(d) going out to eat and I only hope we can regain some part of this.

My Symptoms:

My flares have been roughly 3-4 movements per day at very predictable times, 2x in the AM, 1 in the PM and 1 before bed; anything in the PM is extra. They can be bloody and gassy,

Normally, I’m 1-2 movements in the AM, 1 as I wake up after a cup of tea and one when I return from the gym. I’ve had normal bowel movements all my life until Aug 2011, which I now look back on as perhaps the first indication that I had a UC.

Every Step Out of the House is a Blessing!

I’ll start off by saying I breathe and pray for everyone worse off than me with UC and any other conditions. I pray for all of you suffering.

My questions:
–What do you all think about stress and it’s impact on UC?
–Can the colon heal itself?
–Do many of you experience long bouts of remission?
–Why would my body go back to normal after the Colonoscopy? I’m a believer in this bacteria connection. I even had a prominent Pediatric GI say exactly that; there’s growing evidence of this.
–Anyone have a good probiotic for UC?
–I’m having some difficulty shunning the medical community but any medication that makes me feel worse I can’t believe I should keep going with. How many of you have shunned medication due to bad reactions?
–Have any of you heard or spoken to Dr. David Klien in Hawaii? He wrote Self Healing Colitis and Crohns.

I was diagnosed in December 2012, a few days after my 40th birthday. This came during a second minor flare. The first occurred in August 2011 for approx 6 weeks (5-6 movements, tapering to 4 per day, nothing during sleep) which at the time I thought was induced by antibiotics. I ate normally then, and right after labor day, my body was normal. GI doctor said you’re moving in with your girlfriend, big change, just give it a chance. I’m glad he acknowledged natural remedies.

Fast forward to Nov 2012. Under alot of stress through work, I developed alopecia on my face! I started to have mild symptoms and so I had postponed having the colonscopy for over a year, I figured now is the time. I had the exam and the diagnosis was a proctosigmoiditis (rest of colon looks okay), was given 1000mg of canasa, but the day after the exam, my body was normal again so I never took the Canasa. I figured it just cleaned out some toxins, and I went about my life. I also have a high cholesterol problem, so I had modified my diet that same week and from Nov 27-Jan 7, I lowered my LDL by 50+ points. I was very proud and looking forward to a year of good health in 2013. Eating much less meat, but eating alot of oatmeal and whole wheat pasta with peas. Not very balanced perhaps.

On a business trip out west, symptoms occurred again. 3-4 times per day, relatively predictable and no pain at all during normal life. Just had to be prepared and take precautions.

I didn’t love the GI who did the colonoscopy, but he was recommended. I had to leave because I’m not living in NJ anymore, so I had a recommendation and met with someone in NYC. This new GI said he would have prescribed AsacolHD 800MG 3pills 2xper day + the Canasa. he said if that didn’t work, then we’d try prednisone and other medical solutions. No discussion of diet or stress which I found to not fit too well with my values. Surely there are some foods I should and shouldn’t eat.

THE LIFE CHANGING EXPERIENCE!
I went home that day Tuesday Mar 2, ate a dinner and popped 3 pills and the canasa, and at 2.30 that morning I woke with the most horrible pain, almost choking trying to have a movement. I believe it may have been tenesmus but it was the scariest, most life altering week I had that continued for a several days and slowly died down. I went to my home in NJ for some additional space to recover, had 10+ movements each day, including 2 each night. I took two more pills on Friday but then just said no I’m not doing this. The pain was terrible and I really thought my life was over. I thought I may have to quit working and I may lose everything in my life as I know it.

Doctor said my condition got worse, not the medication. Which in my opinion was too coincidental. I wanted the medication to work really I did! And I said that I’ll get another doctor at that point.

Anyway, after real sole searching, asking myself what stresses I have in life, re-evaluating everything in my life (work relationships, finances, family, the kind of person I am?) I came back to NYC on Sunday night, I was very emotional, thinking my life is over. But with a heavily modified diet of cottage cheese, oatmeal with flax seed, raisins, lentil soup, eggs, 1 cigarette a day (Yes, I heard this works and as you all know I’d try ANYTHING) I managed to get back to a normal routine and normal movements, 1 or 2 movements a day. and no pain, that’s the key, no cramping and real appetite. Work actually helped alot to really take my mind off it. I’m too inside my head right now afraid the worst case scenario will materialize.

But two doctors I’ve spoken with said Asacol is the best we have so let’s try it again, only then will we know if you’re having a bad reaction. Reluctantly I took one pill Friday night. Saturday had alot of fatigue but movements were normal. I had no real appetite, Sunday movements were not normal and I am closing the books on Asacol. Still a bit scared about the uncertainty of my future. Going this without medication, I need to broaden out my diet, I’ve lost alot of weight but I think I was a bit overweight.

Ignorance is bliss, before the medication, I would just go eat and the symptoms weren’t bad, after the medication, I’m a bit frighted to step outside the restricted diet.

Time heals all wounds. I think the marriage coming up, I’m trying to sell my house, all of these things are putting toll on my body. I’m thankful there is a community such as this, and I’m glad I’m taking a step towards being a part of it.

Thanks Adam for turning your condition into this forum. It’s a very special thing you’ve done.

Medications & Supplements:

-I’ve used Bael fruit from my ayervedic doctor and I attribute my first remission to this (before I knew I had UC)
-I’m taking some herbs prescribed by my ayervedic doctor, including bael fruit and boswellia.
-Asacol 800MG HD (not taking)
-Canasa, 1000 MG (not taking)

written by Andy

submitted in the colitis venting area




6 Responses to Every Step Out of the House is a Blessing!

  1. PeterNZ April 18, 2013 at 1:12 pm #

    Andy bro’,
    40mg of prednisone and you will wonder what all the fuss was about.
    Sounds to me like you are having a minor bout and are letting your mind play tricks on you.
    See your doctor today and get some pred. Sorted.
    Take it easy,
    Peter

  2. Jennifer Schaeffer
    Jennifer Schaeffer April 18, 2013 at 2:02 pm #

    Hi – I live in Hoboken, NJ, just outside NYC. Who is your doctor? I have Proctitis, but I want a second opinion. I heard Mt. Sinai is the best…do you use them? Thanks…and feel well! Jen

  3. bev April 18, 2013 at 4:22 pm #

    Ultimate Flora Critical Care by Renew Life is the probiotics that is keeping me in remission without meds.

    As far as the colon healing itself…I’m not sure about that, however, L–glutamine…the other thing that I take everyday (and will forever) heals the mucosa of the colon. That’s right! It stopped my bleeding entirely.

    I took meds for 14 years straight, and they made me even more sick. I wasn’t aware of that until near the end of taking them. My doctor told me it was the UC that was making me so sick. The asacol that I was on started working against me, giving me worse UC symptoms, which was the very thing it was supposed to help with!

    Anyway, I finally went off it on my own, about a month after taking that probiotic. I was feeling so much better on the probiotic, that I decided to just drop the meds. Then, after every UC symptom disappeared, except some bleeding, I started the fermented L-glutamine, and I have never looked back. It’s been a full year now, in remission, no meds….and I eat whatever I want!

    Cheers,
    :)

    • Holly in Virginia
      Holly April 19, 2013 at 9:04 am #

      Hey Bev. I’ve been trying to get that fermented L-Glutamine that you take and can’t find it anywhere except a couple of Canadian websites with insane shipping. Any help locating it? For now I got some regular L-Glutamine powder from amazon.

      • bev April 19, 2013 at 9:19 am #

        Hi Holly,

        I have no other ideas how to get it other than what you have found! I wish I did.

        Sorry I can’t be of more help:)

  4. lynne April 19, 2013 at 12:46 pm #

    Holly,

    I live in the U.S. and have purchased North Coast Fermented L-Glutamine through the following sites:

    http://www.vitamart.ca/

    http://www.nationalnutrition.ca/

    lynne

Leave a Reply