After 20 Weeks on the Specific Carb Diet
- Have been off prednisone, and ALL drugs, for about a month now. After a few weeks of slightly elevated sedimentation rates, I am back in normal range. Note that I have NOT had Crohn’s symptoms, despite the slightly elevated ESR levels- no stomach cramps, no pain, no urgency, and 1-2 BMs a day. Things have been extremely manageable and I feel like I am controlling this disease.
- Have had little stress this week, as I took a week off before starting my new job.
- I have been doing yoga EVERY DAY this week and it has been amazing. I truly, truly believe it’s assisting my digestion.
Something to note is that my MCHC level is slightly below the normal range, at 31.8 (normal is 32-35). This shows slight anemia. MCHC has not been an issue prior to this week, and I did eat more fish than chicken this week, which could have played a factor. I will continue to monitor my MCHC levels in subsequent weeks- but it’s nothing I’m too concerned about right now, as I have had normal levels for each week prior to this one. Will keep watchin’.
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Seeing that I haven’t give blood in a while, I’m going to go grab my test results, which btw, will prove that I’m at normal levels of inflammation, without ANY medication– just strict adherence to the Specific Carbohydrate Diet. 6 inches of snow is currently on the floor in Chicago, and more snow is in the air. Icy / horrible conditions. But I’m going anyway, because I’m determined to prove that the Specific Carb Diet WORKS in regulating Crohn’s disease.
I’m going to make my official theme song is the Beatles’ “Free as a Bird”– because that’s how I feel. Freeeeeeeeeeeee!!!! No longer chained to medications, pain, and fear of my future.
Why do I feel so free? WELL, it’s cuz:
- I have NO stomach pain in the morning.
- I am COMPLETELY med free. HUZZAH!
- Have good, solid poops- usually once a day (TWICE at the most)
- I don’t even THINK about Crohn’s disease. Unless, it’s to reflect on how so very thankful I am that my sister Angela discovered this diet and talked me into trying it. I owe her my life back, and it is my DUTY to tell others with my condition that they owe it to themselves to try this diet!!!
THE DIET WORKS!!! 4 months and 1 week ago, I promised you I would be honest if it did, or didn’t. But it does!
Deailng with my trials and tribulations of Crohn’s disease the past 2 years has made me so, so angry that I haven’t even THOUGHT about cheating on this diet once. Seriously- it was “**** you, you horrible disease- I will NOT ruin all my progress just so I can chow down on a slice of pizza and land myself in the hospital again. I’m just not the type of person that can handle being sick, and going back into the hospital again? Yeah, not gonna fly with me.
So I kissed my pizza and ice cream days goodbye and never looked back since. I’m still eating a VERY rudimentary, but extremely healthy, diet. My diet consists of:
- Scrambled Eggs
- LIGHT uses of butter and olive oil (some days I don’t use it at all and just broil the heck out of my food)
- Occasional use of almond flour baked goods (I do it for special occasions- like birthdays, Christamases, etc)
- Organic Chicken
- Fish: Tilapia, Sea Bass, Snapper
- Scallops and Shrimp (only in moderaton- once every few weeks)
- Blueberries (I’ll do about 3 servings a week, no more than that)
- Apples (I eat one every other day)
- Pears (Introduced it recently with no dire side effects)
- Bananas (EVERY day I consume 2 of these)
- Avocado (I’ll eat at least one a day)
- SCD Cheesecake
- SCD Yogurt
- Celery (In small doses)
- Organic Applesauce
Things I’ve taken off the menu: carrots, squash, mangoes, strawberries, cherries, tuna, beef, cauliflower, broccoli. And this doesn’t mean that it won’t work for you– I just paid super-close attention to how I reacted to these foods. That being said, there’s no reason why I won’t introduce some of them in the future. I remember reacting pretty badly to almond-flour baked goods at first, but then reintroducing them at a time when my tum was more advanced seemed to have good results. In fact, in moderation, almond flour actually helps my poops.
So here are the secrets to my success, which I’m stoked to share with the world:
- Haven’t cheated once. Been on a rudimentary diet for 4 months. Will continue to introduce new foods, but I will NEVER cheat, for the rest of my life. Promise.
- Stick with what I know, and introduce a new food one at a time so I know EXACTLY what I’m putting in my body and how it reacts.
- If the food has dire results (ie, minor pain and looser poops the next day after I eat it) I put it in the parking garage. Based on how adverse the effect, I will either never eat it again (ie, cauliflower) or will give it a couple more go-es before I nix it off the list (ie, carrots)
- Eat everything in balance. For instance, if I eat too much of anything on my rudimentary diet, then it’ll bother me (ex. if I eat 3 apples in one day, the tum will be mad). I take all my own, personal “legals” and make sure I have a little bit of everything so that I’m nutritionally balanced throughout the day.
- I realized my job was too stressful, so I quit and got another one at a smaller firm. I let the person that will be my direct boss know that I have this condition during the interview, knowing that it could implicate me for getting the job, but not really caring because my health comes first!
- Instead of intense, boot camp exercises, I do yoga. And it makes me feel just as strong as my intense, boot camp exercises did.
- I have had a ton of support. My amazing brother and sister each bought a yogurt maker and make me batches of yogurt, because they know I’m a busy working professional that sometimes doesn’t have time to make my own. Because of them, I always have a full stock of SCD legal yogurt and a cheesecake in the fridge. Whenever I go visit my mom, I always return home with a giant back of organic chicken, bananas, and avocados. Of course, I yell at my mom because I’m 28 years old and she still buys me groceries, lol- but at the end of the day, I sooo appreciate it. My awesome mother-in-law will put out SCD-legal dishes during a family dinner and let everyone choose from them, just so that no one asks me questions about what I’m eating. And my cute husband has been so awesome and supportive about me saying “NO REMICADE” to 9 lab coats and defying them- me, as a regular shmuck with an IT background… not a medical one.
Mistakes I made on the lil 4-month Journey
- Tried more advanced foods way too fast (beef, honey, too much yogurt, almond-baked goods, cheddar cheese). From that, I learned to go back to my “Safe Diet” until I get what bothered me out of my system. Then I’ll reintroduce.
- Worked out too hard and had a few setbacks because of it. I now do yoga, and I feel good.
- Know that if I have a setback, I’ll REST my body, drink lots of water, and chill out on the yoga. I had a setback in Week 6 and Week 14- and I was able to get out of them pretty unscathed and very quickly just resting and going back to my “safe diet.”
- Got too stressed at work (ie, “Johanna, you have 3 weeks to execute this project with no resources to work on it.”) I was able to get it out on time, but it was very painful and I had to deal with a lot of issues because of the obscenely inconsiderate timeline I was given. At that point, I decided to go elsewhere that will actually give me reasonable project timeframes that I can execute without stopping my life or worrying about setbacks. Way I figure, you’re at work for 33% of your time on this earth- that’s a big portion! I need to feel way less stressed during the “33% time.”
HUGE, MAJOR MILESTONES, I’VE CONQUERED
- Fully tapered off prednisone (huzzah!!!) NO need for Remicade. NO need for Humira. NO need for Imuran. Freeeeeeeeeee!!!!
- Beat the “3 month flare” that new SCD-ers get
- Gained weight after losing a dangerous amount in the hospital
- Symptomless and leading a normal life!! I’m not consumed by Crohn’s disease anymore.
There will be more roadbumps on the way. And as each day goes by, I’m more and more confident in this diet as my future.
4 months ago, I was weak, depressed after Humira didn’t work and I developed a dangerous infection from it, in the midst of the worst flare of my life that ensued because the Humira stopped working and I became immune to it, and was scared about my future. Didn’t want to switch to Remicade. Didn’t want to schedule my life around hour-long infusions and be “that sick person missing work to go to the hospital to get her blood pumped full of drugs.” Didn’t want to become pregnant and start a family with mouse-proteins running through my blood.
This diet is saving my life, people. If you’re where I was 4 months ago- in the hospital, worried SICK about your future (significant other, ability to work, raising a family, etc) and not knowing what you should do, here’s what you should do.
1) Stop feeling sorry for yourself and “GET ANGRY!!!!” Tackle the diet with tenacity and TAKE CONTROL!!!
2) It’s easy to be skeptical, especially with a-hole doctors in your face saying “You have a 70% chance of failure.” What the doc isn’t telling you that most of that 70% deals with people not being able to stick to the diet and cheating. That being said, docs will give you anecdotal percentages that don’t do the science of the diet justice.
3) Be careful! Diet doesn’t work for everyone. Monitor how you feel VERY closely! Pay CLOSE attention to the frequency of your poops, and aim to be anywhere from 3-6 on the Bristol scale for just starting out.
By trying the diet, you have nothing to lose. Even if it doesn’t work for you or you have too hard of a time sticking to it, the Humiras, Remicades, and Imurans of the world are not going anywhere.
Crohn’s Has Been a Blessing in Disguise
- I’m smarter and more tenacious after 2 years of dealing with Crohn’s.
- I’m more in tune with my body than I have ever been my whole life.
- I’m eating the healthiest I ever have my whole life, which means that in the future, I’m less prone to other diseases.
- My husband is eating the healthiest he ever has since I’ve known him.
- I have more energy than I’ve had in 2 years.
- I no longer worry about my future.
When I was mulling over the best treatment option for me, I remember wishing I could read someone’s experience in journeying through the diet and learning REAL facts- like ups an downs- and pitfalls, and my overall experience with it.
This is why I started this blog. I hope I can help others in inspiring them to at least try the diet. Because for me, it is working freaking wonders.
SCD Experiment has gotten 10,005 total views. Not too shabby, seeing as if I’ve only been live for less than 3 months!
On the inflammation front, I’ve been feeling so well that I’m going to get my inflammation every 2 weeks instead of weekly. Going this Saturday to get measured.
Happy “10,005 Day” to me.
And by breasts, I mean, chicken breasts.
Me and the husband had some good eats tonight, all Specific Carb Diet friendly. My portion was just a tad smaller, lolz.
Despite the solid reputation the Rush University GI department has, they can go suck an egg, and here’s why. Cheers to a hospital-free 2012, hopefully.
Saw a GI on 08/15. Told me that I was fine, but I should take a couple of tests. Took a stool sample on 8/19. Calprotectin test, after insurance cleared, cost $452.77
When I got the results of the calprotectin test, I get a lovely voicemail from my doctor with the results: “Young lady, you have the single highest level I’ve ever seen. Congratulations, you have one flamin’ colon.” THANKS Doc- for freaking me out about my flare even more than I was already freaked out- and also, for letting my super-high calprotectin levels serve as a laughable matter to you. This doc wasn’t even sure what to do with me, so he transferred me to “super GI.” Made an appointment, but there was a 3 week wait to go see him, so I scheduled a 09/09 appointment. I was so sick, I couldn’t last the 3 weeks- my flare and infection from Humira landed me in St. Francis Hospital on 09/01 . In short: thanks for having the treatment process take OVER A MONTH, Rush Med Center. Not sure it’s good practice to say “Hm, you’re so bad I don’t know what to do with you– so here, let me refer you to someone better than me and make you wait 3 weeks to see him.”
Stayed at St. Francis in Evanston for a week and they got my infection down, but I was still flaring, big time. On 09/09 I left St. Francis to go see the “Super GI” at Rush that I was waiting for 3 weeks for while I got worse, and worse, and worse. Super GI looked at my file for FIFTEEN MINUTES and determined, immediately, that I should go take Remicade, knowing full well that I reacted dangerously to Humira and developed immunity to it after less than 8 months! In addition to the Remicade, he also wanted me to start Imuran and take it in conjunction with Remicade infusions. In short, he wanted to pump me full of ALL types of drugs after a 15 minute diagnosis, and admitted me into Rush Hospital that afternoon to get on Remicade immediately.
I was going to take the Remicade, too. It’s a good thing the staff effed up and made me stay overnight because they couldn’t get the infusion ready. It started with the one med student interviewing me for over an hour about my history (she didn’t bother me too much, she was a nice girl). Then I had to deal with annoying young med school students trying to “act cool” with me, when they were even younger than I was, and I could give two shits about their opinions <<nor should they even offer their opinions, because they’re not even licensed physicians yet>>.
After all these young, grubby med-school kids’ hands poking my tummy for hours, along came “Dr. 2nd In Command to Super GI” who was the first person I started asking questions about diet to. He immediately dismissed me and said, “After Remicade, you’ll be able to eat whatever you want.” And then I asked him what if I didn’t want Remicade- what about this Specific Carb Diet? He told me that diet had no proven effect on Crohn’s, and he was going to set up my Remicade infusions.
This lead to young Dr. I’m-a-Dick scolding me a few hours later for trying to ask questions as he set me up for Remicade. I pretty much threw him out of my room.
Dinner time! I was told that Rush has a “diet division” that focuses on people with special dietary needs. I could even have a nutritionist help get me foods that were more comfy on the tummy. WRONG! This “diet” division turned out to be a disgruntled cafeteria worker. To quote “No, we don’t come up with no special diets, but we can send you a menu.” There were no options for someone with IBD on that dinner menu. I was sent processed turkey full of gravy, mashed potatoes, and a BROWNIE. Which my husband ate. After explosive big D that resulted from that meal, which I called “the last supper”- I was aghast, and decided right then and there, that Specific Carb Diet was the route I wanted to go.
In the morning, after they gave me an AWESOME breakfast of super-greasy-eggs-and-bacon, Dr. I’m-a-Dick came back with a more subdued approach in trying to get me to take the Remicade. I loved looking him square in the eye saying, “Thanks but no thanks- this isn’t the route I want to go.” He ended up going and escalating my push-back with Dr. Second-in-Command-to-Super-GI, who was pretty understanding about the push-back on the Remicade. He said he’d allow me to leave the hospital without taking it, but I’d have to sign a waiver.
Enter annoying med-school GI students who were trying to “act cool” once again. One of them actually had to say something along the lines of: “There’s this one med student I know with Crohn’s who knows that his diet makes him flare. Sometimes he’ll miss school because he’s in a flare, but he drinks a lot anyway” I laughed it off at the time, but inwardly I was thinking “AH yes, these are our future GIs- getting wasted, ignoring their own colons / feeling like crap, and telling people like me that actually GIVE A SHIT about their bodies that diet doesn’t help. Thumbs up to med-student-that-talks-too-much for having diarrhea mouth for giving me the insight to finally realize that doctors are just regular Joe-Schmoes like me, that make stupid decisions and bad mistakes.
That one night hospital stay over at Rush cost me $520.53, after insurance cleared. Yet I stayed at St. Francis for 8 full nights and only paid $865.90 out of pocket. Rush supposedly had a “nutritionist” to help me determine what to eat, and that never happened. St. Francis made sure to give me lactose free and gluten free meals!!!
So guess what, crappy Rush GI team? I’m not trying to sound cocky- because you could be right- I can flare any time. But I will say this. 4 months on Specific Carb Diet. Med Free. Feel Great. So thankful for how I feel that sometimes I’ll start tearing up, just because I feel so lucky.
But I also know that it’s more than luck. I haven’t cheated ONCE on this diet. I get pricked with a needle once a week and drive to the hospital to measure my blood- rain, snow, or wind. I make lunches for myself and cook every night, even as busy working professional. I’m still excelling at my job and can now facilitate meetings without having to worry about stomach pain at inopportune times. I quit drinking, even socially, and enjoyed a Vegas vacation with friends without one sip of alcohol. I listen to every inch of my body and now have learned to know the exact extent of my inflammation, based on how I feel.
I will say this, docs: I understand that most people don’t have the gumption / will power to do what I’m doing. But dammit, why can’t you give people like me, that are WILLING to do the work to avoid these drugs that we react badly to, encouragement to try following the Specific Carb Diet? Why should the people that REALLY give a damn about their health and their bodies be given the chance to try a totally natural approach??
To anyone reading this that is unsure about their treatment options for their IBD- if you believe you have the strength and the gumption to try the Specific Carb Diet and make it work to your body’s needs… if you TRULY feel you can make that lifestyle change, then I implore you to give it a shot!! You have nothing to lose… because if it doesn’t work, the Remicades, Imurans, and Humiras of the world are not going anywhere. Give it a formidable attempt- say you gave it your all! If there’s a chance you can be like me- med free and so thankful to have your life back that you are on the verge of tears each day- then the success you taste will be sweeter than any processed, sugary crap that the diet forbids you to eat.
- Link back to the person who awarded you
- Nominate 5 other blogs for the award
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- Little SCD Woman – This little SCD woman successfully beat Crohn’s into remission.
- Aly’s Blog- Aly. Super creative. Super brave. A recent diver into the Specific Carb Diet.
- Souper Duper SCDer - Bet you 50 bucks that Allie’s SCD recipes are more delicious than regular ones.
- My Cranky Gut- D’s Crohnie-tastic adventures are a trip (because why cry when you can laugh). Always a fun, and informative read.
- Against All Grain- Screw the grain! Grain free, gluten-free, and refined sugar-free recipes? Check, double check, and triple check.