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.