T’s Experience with Colitis

Introduction:

Ack! I hate writing about myself. I’m 33 and from the Mitten. I’m a typical urban hipster – I like good coffee, craft beer, artisanal cheese, biking, traveling the globe, reading high-brow literature and history books, feminism, arguing with Republicans, and collecting soul and indie-rock records.

My Symptoms:

I have a little bit of joint pain in my fingers and sometimes toes.
One poo a day!

My Story:

Was diagnosed January 2nd, 2012 – not a great way to start the New Year! My symptoms starting two years ago. My boyfriend’s nickname for me was ‘Streaks,’ because while his poo flushed down the loo, mine always left lots of streaks! I used to get major cramps from eating certain foods (hummus = evil) and I was diagnosed with IBS. Over two years, it got worse, until finally I came down with food poisoning. After that fateful chicken salad sandwich (Oct 2011), I was never the same. I had lots of poo, blood, undigested material, mucus,etc.. Thankfully, I have a GI nurse researcher in the family and she got me into a GI doctor. He was amazing. He scheduled me for a colonoscopy 3 days after I saw him in his office. I was diagnosed with Crohn’s at first, because the ulcers were so bad, but the genetic tests showed I had colitis. I was put on Lialda and enemas. They didn’t work and my doctor then changed routes and put me on Prednisone 40 mgs with Lialda (4 pills in the am). I got relief! It’s been successful and I’m now on 3 pills of Lialda and no Prednisone since June.

Here are my notes for fellow UC’ers:

— The SCD helps. I stick to it about 5-6 days a week and cheat a little on Friday and Saturday. On Sunday morning, it’s back to the schedule.

— I suggest taking 6 anti-fungal pills in the am. There have been studies linking colitis to fungal pathogens in your intestines. The theory behind the anti-fungal diet (which is linked to the SCD diet) is that certain foods contain fungus which upsets the natural bacterial balance in your body. In my experience, this is born out. I ate peanut butter (a known fungal food) and I started to flare. I stopped eating it and I felt better.

–My extreme disease started dramatically after food poisoning. I believe the pathogen theory of my disease. That environmental factors triggered my disease and that I have the genetic autoimmune dysfunction.

— You need to see a good GI doctor. A good GI doctor treats the disease aggressively! He/she wants to see you on a regular basis and wants to hit it hard to get you into remission. They schedule tests fast and don’t f*** around.

–I also drink a whey protein shake in the morning that is made with just stevia and whey isolate protein. There are studies that show that whey protein supports intestinal healing. I use a high quality whey protein isolate (proenergy) that contains no lactose. It has lots of protein. I use unsweetened almond milk. Note – this has caused my one daily poo to be a little bit more mushy than if I was eating eggs, but since I just have one it’s not a problem.

Final notes:

I fear all the time about having a flare. I sometimes freak out if I think this process is happening. Adam, any chance you could do a survey/post about what signs people have when they start a flare?
Also, I’m taking a kick ass hiking trip in Scotland, Ireland and going to London and Amsterdam. How do people cope when they are traveling and what changes do they experience in their disease. My doctor said I would be ‘off schedule,’ but that I shouldn’t have a flare.

Peace Out!

Where I’d like to be in 1 year:

Reading that they’ve found a cure for colitis or at least have made major advances in understanding the intestinal bio-dome.

Colitis Medications:

Prednisone worked the best – took me right out of my first flare

Lialda 3 pills a day – keeping me in remission currently

written by Therese

submitted in the colitis venting area
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