When Will It Stop?

Intro:

1986: lived in Madrid for the summer. Partied hard til I woke up one day with bloody diarrhea. The doctor there told me I had colitis and that I needed to rest and eat a very bland diet of omelets, fish, applesauce. I did that for 3 weeks and was actually cured. I was 20 years old.

2002: Extremely ill for 6 months, then colonoscopy finds I had UC. After Asacol didn’t work, they then put me on Colazal and within about a month I was in remission. Symptom free for almost 8 years on the Colazal.

2010: Thyroid Cancer diagnosed at Mayo Clinic, Jacksonville. After surgery I was cured! Doctor who found the thyroid cancer was my gastroenterologist so I stuck with him.
2011-2014: Back and forth to Mayo Clinic for colonoscopies and various meds. Prednisone, enemas, Colazal the whole time and still I have flares 9 months of the year every year. Currently in a flare that has lasted 6 months, even though I gave up gluten and dairy.

After reading the entire book and cookbook last weekend, I am hopeful that I can turn this around with diet, as I did in 1986.

Some more about me:

I was actually born and raised very near Adam in San Mateo, CA. I went to college at Santa Barbara as well. I have lived in Spain a few times and speak Spanish. I have lived in Virginia for the past 20 years with my husband and two children. I am now a full-time portrait photographer. I survived thyroid cancer in 2010. I go to Mayo Clinic once per year to have my “health vacation” and I love my doctors there, but I still haven’t found them to be very forward thinking about the connection with diet.

Symptoms:

Bloody stool, bloody tissue, losing weight, fatigue, weakness, achy joints.

When Will It Stop?

Have been on a gluten-free, dairy-free diet for over 6 months, and yet my colitis has been in flare for almost the entire time. I have been on mesalamine enemas and Colazal for that time. A few weeks ago it was changed to Cortifoam enemas. And finally last week I had my fourth colonoscopy in 3 years and am now on Lialda and the cortifoam enemas (for 6 weeks).

My main issue with UC now is that I cannot plan anything for early in the morning. I cringe if I have to leave my house before 11:00 as most of my diarrhea is in the morning.

I would like to know how quickly people felt better after changing to the SCD diet.

Do they ever cheat?

What happens if they cheat?

How do they live the rest of their lives without a single grain?!

What foods do you eat for breakfast during a flare? Do you juice? How do you handle social events like the Superbowl parties? I had to bring all of my own food.

The SCD diet says I can have a little bit of dry wine. I actually don’t notice any difference whether I drink a little wine or not. Definitely have given up all hard alcohol.

How do you handle stress? I am highly motivated to make others happy, and often it leaves me stressed and unhappy (work) so I am sure that adds to my UC problems.

Has anyone ever used biofeedback? What were the results?

My family is supportive, and luckily one of my college roommates (UCSB) has Crohn’s so she and I can share the most intimate of issues. She has now cured herself with a strict diet as well and is off all medication.

Currently on Lialda 4pills/day. Cortifoam enemas (6 weeks). SCD Diet. Been in a flare since August 2013.

written by Kristen S

Ask Adam:

“Fellow Bay Area, Santa Barbara aficionado: I am wondering how long it took you to be out of flare once you changed your diet (although you were on Prednisone, correct)? I have had good days and bad days, but yesterday I had a Tropical Smoothie and today I’m passing bloody tissue. I hate UC!”

Hey Kristen,

Thanks for sharing your story and including so many details!  And thanks for your really nice review on the ebooks I wrote.

As for your questions, it was only a matter of a few days before I noticed definite changes in symptoms once starting the diet.  Things were not completely 100% cleared up, but there was significant improvement which was awesome as I’d hit a standstill with that prior.  And yes, I was on a low dose of prednisone when I started the diet for the first time as I explained in the ebook.  Several months earlier I was on a very high dose (60 mg/day) and come August when I started my diet changes, I was down to 15-20 mg/day.  The full taper was very slow and not until end of October was I through with Prednisone completely.  I would say that between 4-6 weeks after starting the diet, I was out of the flare, with no more symptoms, and my mental state was not so concerned with UC as it had been for so long.

As for Tropical Smoothies…I would not go there if you are seeing symptoms.  Often there’s just too much sugar in those types of drinks for our fragile systems to handle when symptoms are present.  Better to wait til things clear up and make sure to make them on your own.

You’ve got a ton of other great questions I hope some others will jump in on, buy I wanted to let you know how I handle things like Super Bowl Parties (or bachelor parties), or birthday parties etc…

Real simple actually for me:  WATER.  Lots of water drinking and not being caught without a glass of water in my hand.  Especially when people are doing the whole “Cheers” thing.

Yes Yes, seems lame right.  Especially after all the hardcore partying I’m sure you got into down in SB back in the day, but it will help you.

As the years have rolled on, I’m realzing its not so much pressure from others to eat (or drink) things I know will hurt my colon.  But rather, its more a pressure that I put on myself not to offend others.  (For example, last night we had two friends over for dinner.  Ryan and Olivia.  We met them three weeks ago.  Anyways, the deal was we (Michaela and I) were going to make them dinner.  But…Olivia, the coolest girl ever, went ahead and made a pasta salad dish and brought that over too.  No NO NO.  Yeah it looked good.  Yeah, she wanted me to try it.  But NO.  No way.  Couldn’t do it.  Not allowed for me right!  I’d told her about my UC and how I treat it with diet last week when we were at her husband Ryan’s birthday party.  Everyone there drinking like crazy.  Especially the Spainard Carlos from Barthhhhelona.  No joke.  But not me.  Water, Water, Water.  OK, a tiny bit of red wine too.

Do your best.  Keep us posted and I wish you the best.

Adam