Posted 8/26/2014 4:09 PM (GMT 0)
Thanks for the support all! I don't think anyone who doesn't have this disease can truly understand how exciting a clean colonoscopy is! Though my mom comes pretty close to understanding after almost 20 years of helping me manage it.
To answer your questions, yes, the Remicade helped me a lot. I was hospitalized right before starting it (going 20+ times a day and losing a lot of blood). A colonoscopy while in the hospital showed pancolitis. The Remicade got the symptoms under control pretty much over night and I stayed on the Remicade from October 2012 – July 2013 (infusions every 8 weeks).
The problem was the Remicade was quickly becoming less effective. I moved up my May infusion a couple of days because I was starting to flare pretty quickly. And then just a few weeks after that infusion, I started having symptoms again (going ~10x per day with a lot of blood). I don’t think the urgency or pain was as bad as some prior flares, but I honestly can’t remember. I also had a bad rash on my legs (and acne on my face) which is my “warning” that things were going in the wrong direction.
So I started the SCD in June 2013 to see if I could get it under control without moving my infusions closer together. The progress was pretty amazing. Within a week I was down to 3-5x per day and much less blood. It took about 3.5 weeks for all the symptoms to go away (D and blood). Maybe my inflammation wasn’t too bad since I was on the Remicade, so that helped me heal so quickly? I had my last Remicade infusion in July 2013 after starting the diet, but my symptoms had stopped before I got that infusion. I actually went 9 weeks between my May and July infusions and was symptom free for the last 10 days of the cycle after flaring for four weeks in the middle (but getting better each day once I started the diet).
In terms of the actual diet, I did the intro diet for a few days, but started introducing other legal foods pretty quickly. I kept a diary of everything I ate for the first month or so as well as my symptoms. It is pretty amazing to go back and look at the progression! Eggs and yogurt bothered me in the first month (it took me a week or so to figure that out), but I was able to reintroduce them pretty quickly. Here are a couple of days meals from early on (I ate a lot of carrot/chicken soup in the first week!):
Week 1:
Breakfast: Carrot / chicken soup, Farmer cheese w yogurt
Lunch: Carrot / chicken soup, broiled beef patty, raw apple juice/water
Dinner: Carrot / chicken soup, salmon, banana cake, grape juice / water
Week 2(after figuring out that yogurt and eggs were bothering me):
Breakfast: 2 cheese cupcakes, grape gelatin
Lunch: Blueberry peach bread (from almond flour), carrot soup, cheese cupcake
Dinner: Cheddar cheese, Swiss cheese, spinach w butter and salt, carrot soup, banana bread
I was pretty strict at the beginning (first six+ months), but now I’d say I follow the diet 98%. Except for a few exceptions, I don’t deliberately cheat, but I assume there is hidden “illegal” ingredients whenever I eat out. I don’t eat out often though and it doesn’t seem to bother me when I do. One item that I know is illegal but I eat is cocoa powder. I use unsweetened cocoa powder to make Chocolate Pudding from Avocados (it tastes like a pudding cup to me!) and chocolate ice cream from coconut milk. I also add a scoop to coffee (decaf) along with grassfed butter, coconut oil, and a little honey. It tastes like a rich treat from Starbucks and helps me get some extra calories in (I don’t have it every day though!). I also may sometimes have illegal beans (some types are legal and some illegal…I can’t remember all of them, but know chick peas and cannellini beans are “illegal”). I have the 24-hour yogurt in a smoothie for breakfast most days, but don’t take a probiotic pill.
The few times I’ve really cheated – a piece of pizza or Tostitos – I got the beginnings of the rash on my leg within a day or two, so I knew those were bad for me and went strictly back to my diet. In a way, I feel lucky that the rash gives me a warning. I’m tempted to test out a few other things (rice, chick peas), but I’m also afraid to mess things up when the diet is doing so well for me.
The diet is tough at times, but overall, I'm used to it now so don't find it too bad. My philosophy is that nothing would taste as good as not being sick feels. Plus I make a lot of yummy treats with almond and coconut flours. But it is hard work preparing so much from scratch (I’ve found Larabars to be one good prepared snack). Luckily, my husband is really supportive and helps with cooking (he eats regularly outside the house, but our dinners are always SCD compliant). It can also be a little tough socially, because it becomes harder to eat out or at a friend’s house when you are worried about the diet. And of course there are days when I wish I could have a slice of pizza or a bowl of pasta. But again, I find those challenges totally worth it to not be sick. I just wish it worked for everyone!