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It’s 2015 and I’m New to Ulcerative Colitis

Intro:

I’m a 51 year old woman who works out with a trainer, eats healthy and takes long walks. I love dogs and currently have 5. They are all pound puppies. My oldest is 17 years, when he arrived, he was a year old and weighed 17lbs. He lived most of his life at 42 lbs. He will be missed. It is amazing what love and good food can do for any mammal including humans!

Some more about Lilly:

I was born in NYC but have lived in the southwest for most of life. I’ve traveled throughout the country and the world. My world view is simple – if you eat at another’s table and they are kind people – you learn that they are your sisters and brothers and take joy.

Food is now an issue and causes my heart much grief. I don’t want to define myself by this disease – but it seems like I can no longer travel and eat randomly

Symptoms:

Diagnosed – April 29, 2015
Symptoms – massive amounts of blood, mucous, runny poop and gas
constant urge to go to the bathroom – flares every 6 weeks

Canasa, homemade kefir and food change are helping with blood & mucous.

Lilly’s Story:

I have gotten conflicting information by doctors (GI and Proctologist)
I read a ‘rant’ from 2012 that states Canasa can cause poor appetite.
I have lost 20lbs – the Doc said “I have no idea why you have lost this weight.” Are UC’ers more knowledgeable than the physicians????

I can’t get straight answers – a. don’t eat nuts & seeds b. eat whatever you want –
keep taking the Canasa –

There seems to be no end in sight!!!!!!!!!!!!!!!!!!!!!!!!!!
I’m NOT a medicine taker! Arrrrrrgggggghhhhh
Is the Canasa 4-ever? Because Canasa said they have no information past 6 weeks. If it fixes ‘flare-ups’ shouldn’t one stop after a period of time?

My main concern is not getting bloated which seems to happening weekly. And it’s horrible and degrading to constantly give oneself an enema. It seems like the idea is “get used it.”

Why is there so little information coming from the medical community? Why do they act like it’s no big deal? This UC is life changing! I went on vacation and had a flare up. What the H. E. double hockey sticks!!!

How long do people take Canasa? How long does it work? Do you just keep taking it until the next flare up? I do NOT understand and it seems like the 2nd doctor asked me lots of questions, took my blood, and sent me away. Where are the answers? From each other?

How do people control their flare-ups? What seems to work best? This is debilitating, humiliating and I’m exhausted every day.

What do people do when they get sick? I can’t take pills. I get a flare-up. Are there any doctors out there who provide answers without the lip service? How do you know if that’s the only thing going on? Why does all my poop stay shoved up next to my stomach and not come down and out? Supposedly, UC is in the lower colon -so why am I have trouble with upper? I don’t get it?

Very very very frustrated

Her Ideas on What’s She’s Doing To Treat the Colitis

I have no idea what works. I currently eat a lot of salmon, avocado, kefir, eggs, steamed vegetables, rice, beans, nuts, bananas, apples, blueberries, melon, peaches and cheese. I no longer drink coffee but I do drink Coca-Cola with real sugar (it’s bottled in Mexico). I don’t eat chili or salsa, corn, wheat or eat food from restaurants that touch the grill because the oil used is too hard on my stomach. It gives me pain. I’ve learned that some places rinse their lettuce in chemicals to preserve freshness – also bad for me.

Homemade Kefir is tart but can be sweetened with a bit of honey and cinnamon and vanilla. Kefir grains feed on the lactose and infuse the milk with tons of live probiotics which are excellent for the gut. They sell shots at Whole Foods for $5 a piece. I drink about 6 oz a day for the price of a cup of organic low fat or fat free milk. It’s a bit tart but also a natural anti-inflammatory. Kefir grains grow, so once you start a batch, you can share with your friends.

written by Lilly D

submitted in the colitis venting area