Self-Pity,” he reminds himself, “Is a Noose Dangling from a Rafter”

Introduction:

Hello! I’m Erik. My symptoms started about a year and a half ago and I was diagnosed a few months after that. I’ve been on the SCD for a few months with some successes and some disappointments, and today am on day 5 of re-starting the intro diet. I have two kittens and a lovely girlfriend–they are UC free.

This is long, but it felt damn good to vent. Thanks for reading.

The Details About My Ulcerative Colitis:

I’m a happy person. I make choices based on the belief that we ought to flourish in all the ways that make us human, and to flourish is to be happy in the most general sense. Lately I’ve been challenged to keep that up, but I do—it’s far more difficult while rocking back and forth, pants on your ankles, your head pounding, listening to the pitter patter of dripping blood, while gripping your aching abdomen with what little strength you’ve got because it feels as if something is wringing out your insides.

My first signs of Ulcerative Colitis started while abroad in Santiago, Chile. Bright red blood on the tp, it was. After a few weeks of that, off and on, I paid cash to see a doctor—thank god he spoke English, my Spanish wasn’t refined enough to talk comfortably about blood and butt holes. He said it was a fissure, and gave me stool softeners and lube for my intestines. Naturally, as we know now, that wasn’t the way to go, so things got worse, little by little. Then I had my first accident; my girlfriend and I went for a jog, as we usually did, and about a half mile in I had wet underwear. That feeling of ‘something is terribly wrong here’ flushed my face, and we stopped and I told Shay, my girlfriend. I did the manly thing though, and we finished our run like usual. The next accident was in Peru; we were on our way out the door of our hostel, and woops! I sharted. A quick change of underwear and cleanup and we were on our way.

I couldn’t do much about my finicky butt while abroad—we were broke, and I had to pay up front for medical costs. As soon as I was home however, last September, I was diagnosed with Ulcerative Proctitus—not so bad, looking back on it, just the first 10 inches of my colon. I went on Lialda and soon thereafter had one of the greatest poo’s of my life. We were out at a Chinese place; I went to the bathroom, and was shocked—it had to be 13 inches, shaped like a question mark. I took a picture of the prized turd on my phone and showed it to Shay at the dinner table. We laughed hysterically—one of many signs of how great and supportive she is.

Lialda wasn’t covered by my insurance, so I switched to another Sulfa drug, the generic Balsalazide—9 fat pills a day. We moved back to Berkeley, where I was determined to follow my passion for food and cooking by finding a line cook gig. I did. For months I was ok; at least, looking back, I can’t think of any major issues. The following year—this year—things became progressively worse. I should have found another GI doc here in my area, but instead communicated via phone with my doc back in Santa Barbara. After 2 5 week rounds of Prednisone and 2 respective relapses of symptoms, he put my on Azathioprine too. My colon’s condition kept deteriorating, so I found a good doc in my area. By that time I had taken to wearing man diapers. I’d wear them everywhere—shopping, (not all grocery stores have toilets as I’m sure you’re all aware. And Costco’s toilets are fine, but they’re a long way if you’re over in the meat section), dining, bike riding, walking, and at work. I was a cook with every intention to be a great chef—and the culture in the kitchen isn’t babying of poo breaks and stomach pains. I simply couldn’t make it to the bathroom every time and I had tickets up, food to cook.

Of course, it became too much and I couldn’t hang any longer. I took a day off from work, which turned into two, and at that point my day consisted of hourly (at least) trips from toilet to bed, and bed to toilet. At the end of those lovely days I had the pleasure of squeezing a tube of cortisone up my ass—it wasn’t working. That night I went to the ER—the pain was ridiculous. My new doc got me a colonoscopy asap, and found that the UC was bad everywhere, from the hole to the ileum. Back to Prednisone, then.
The symptoms eased, but I suspected they’d be back at around 20mg of Pred. I was still off work and had plenty of time to search the internet for advice. Conveniently, I found strikingly different diets recommended by different sources—“eat cream of rice, cheerios’’, “eat whole grains, less fat”, and the SCD “NO carbs except in honey, fruits and veggies”. C’mon now, what the hell are we supposed to do with this contradictory advice, including the weak advice from our doctors?

The SCD was clearly the most respectable dietary regimen that I came across. But I wanted to be a chef. Food was my life, and this diet knocks out half of this earth’s bounty. You can’t cook in the best restaurants if you can’t taste the food, but then again you can’t if you have to shit blood every 30 minutes either.

I bought the book and got started.

A few days later I had solid poops. A few days after that the pain was gone. I was down to 20, then ten, then zero Prednisone, and I was completely symptom free. With high energy and a clockwork solid poop schedule, I looked for work. Unfortunately, not towards chefdom. I had to sacrifice that passion for my health.

A ‘stress event’, as the doc calls it, happened a few weeks ago and symptoms came flooding back. My doc says the healthy streak had nothing to do with diet, but I know better. What I don’t know is what to think now. I’m on the fourth day of starting over on the Intro diet; pain seems to be subsiding, and I see some solid poo every other time, but that pitter patter continues. While the choice is mine, doc says Remicade is the next step, in addition to the Azathioprine or instead.

I have to say, I am not down with more drugs (I gave up all the fun ones awhile ago…) I want the SCD to bring me back to life like it did just a month ago. I slowed down on the yogurt thanks to your last video response, Adam, so hopefully that will help. And I’m lookin forward to your video of foods you ate to escape the flare. If any of you have any helpful words, please share!

I’m still a happy guy, blood out my arse or not, and I’ll keep it up just like so many of you do.

And Adam—I’m in Oakland, wanna hang out? I’d love to cook something.

Submitted by “Erik” in the Colitis Venting Area

My Ulcerative Colitis Medications:

Medications: any medication details you want people to know about you with regards to colitis…
For Example, which medications do you think have worked the best/least…why?

Lialda-worked at first, but had to go to generics.
Balsalazide-worked at first, but failed me after a few months.
Prednisone-worked like a charm for the first few weeks, then symptoms return along with nasty side effects
Azathioprine-can’t tell. It may have played a part in my recent remission, but and currently I’m not as bad as I was prior to the hospital visit. But since then I’ve started the diet too, so its hard to tell what’s working and what’s not.
Vicodin kills the pain, but I don’t like to use it.
Hioscyamine-little pills that dissolve under your tongue- were supposed to ease abdominal pain but they don’t do much for me.

 




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3 Responses to Self-Pity,” he reminds himself, “Is a Noose Dangling from a Rafter”

  1. Cheryl October 19, 2011 at 3:36 pm #

    Hi Eric,

    I enjoyed reading your story. I have been on the SCD diet since the end of October of 2008 (almost 4 years now). It seems hard in the beginning to give up food that you love…but it is so worth it to improve the quality of your life. I went into remission very quickly, but it did take me longer than the first 30 days on the diet. Though I made tremendous progress the first three weeks.

    Breaking the Vicious Cycle says that a person typically will have two relapses the first year, one at around 90 days and the other at 6 months. I didn’t have either, but started flaring 19 weeks ago after I took a Vitamin B12 shot. My flare just ended, but it ended naturally. I have been completely med free for a year and nine months. I was taking 12 tablets of Sulfasalazine, plus 40mg of Prednisone and was having Remicade infusions.

    Anyway, long story short, ways that I stopped the flare included Natren probiotics, Olive Leaf Extract, and L-Glutamine. Cutting down on honey, fruit and almond flour is advised though. It took 2 weeks of supplementation to bring it to an end after 4 months.

    Love to help if I can!

  2. Heather October 20, 2011 at 6:02 am #

    Thanks so much for your posts Erik! I just bought the book, Breaking the Vicious Cycle, and am very interested to see how it has or is working for others. I haven’t started the diet yet, I am waiting until I read the entire book and soak it all up before starting.

    Looking forward to future posts!

    Cheers,
    Heather

  3. Blake October 20, 2011 at 7:42 pm #

    Erik,
    Loved your story, sounds so similar to what I’m going through.

    Pitter patter of blood… check
    man diapers… check
    sharting… check
    making a decision on prednisone… check
    sick of all the contradictory info on what you should or shouldn’t eat… check

    Sorry you had to give up your food dreams for now. Who knows, maybe you can be a health/SCD food cook and start some fantastic foods that people from this website will buy. Just a thought.

    Anyway, I don’t have any real advice for you at this point cause it will probably contradict something somebody else tells you, but I’m struggling with the same crap. Just wanted to say hang in there. Sounds like you know the route to take to get into remission because you’ve done it before. I know that its hard to stay in remission once you start getting comfortable with you bowel movements. I really hope I can find remission and then stay there for a long time while resisting the temptations of other foods, alcohol and all the other shit us UC’ers shouldn’t do. Take care bud!

    Blake

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