Results!!

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.

A more detailed look into what happened this week, including foods eaten, activity, external factors, and supplementary medications


Read About Other Weeks Here

Here’s The Baseline, Where it All Started

Week 1 : food, activity, & detailed synopsis

Week 2: food, activity, & detailed synopsis

Week 3: food, activity, & detailed synopsis

Week 4: food, activity, & detailed synopsis

Week 5: food, activity, & detailed synopsis

Week 6: food, activity, & detailed synopsis

Week 7: food, activity, & detailed synopsis

Week 8: food, activity, & detailed synopsis

Week 9: food, activity, & detailed synopsis

Week 11: food, activity, & detailed synopsis

Week 12: food, activity, & detailed synopsis

Week 13: food, activity, & detailed synopsis

Week 14: food, activity, & detailed synopsis

Week 15: food, activity, & detailed synopsis

Week 16-17: food, activity, & detailed synopsis

Week 18-19: food, activity, & detailed synopsis

Week 20: food, activity, & detailed synopsis

Advertisements
  1. 10/14/2011 at 8:01 am

    I would like to interview you for my blog (blog.sethroberts.net) which is about using science to help yourself — as you are doing. I wrote an article about SCD for boing boing recently.

    http://boingboing.net/2011/10/10/seth-roberts-grandmother-knows-best-about-crohns-disease.html

    if you are willing to be interviewed (by email) please contact me.

    Seth Roberts

  2. 10/15/2011 at 3:03 am

    This is fantastic progress 🙂 I hope it continues for you! I just found your blog thanks to a tweet from @scdkat 🙂

    • 10/15/2011 at 3:52 am

      Hi Amanda- thank you so much for the support and kind words! Stoked that I have been improving as much as I have. Really hope I can keep continuing relaying good news going forward! Time shall tell 😉

  3. 10/18/2011 at 8:31 pm

    Thats great! Can I ask what kind of vitamins you are taking? I was on so many scripts when I was younger I steer clear of pills.

    • 10/18/2011 at 9:35 pm

      Yes ma’am. Here’s what I’m looking at per day:
      – 1mg Folic Acid
      – 1 Tablet of Folic Acid
      – 1000mgs of Vitamin C
      – 1 multivitamin
      – 600mgs Klor-Con (for potassium)

      Every so often, my doc will give me some antibiotics for a week (metronidazole and levoflaxin) to kill any potential bad bacteria growin in the ol’ colon.

      Sucks taking all those vities in the morning, but it’s keepin me healthy! 😉 Let me know if you have q’z.

  4. 10/23/2011 at 4:05 am

    Cut out all juices and nut flours, that should cut down on cramping and D. Watch your volume, don’t overload at any one single meal. The pred is a necessary evil at this point — so sorry! I know it’s terribly disappointing to go up when you’ve been tapering, but it does sound like you tapered too quickly. What meds are you on and what are the dosages? Please don’t tell me you are just on pred and nothing else!

    Hang in there!!

  5. 10/23/2011 at 4:15 am

    P.S. I mean what other anti-inflammatory drugs are you besides pred? It doesn’t look like you are on anything… that’s odd, in my experience (ulcerative colitis for fifteen years). You should be on a maintenance drug as well as the pred so that when you get OFF the pred you’ll have something backing you up. Typically they take a while to kick in, so start asap. I used to take… gosh, what was it??? A mesalamine drug… I switched from that (whatever it was, total brain-fart right now) to asacol since that seems to be more effective for my particular type of UC. It’s an old drug and not prescribed very much anymore because it requires up to three doses a day and most people like to take meds only once or twice a day, but I’m happy with it. I wonder if 6MP, aka mercaptopurine, would be of any help to you. I use it off-label, it’s intended for treating people with leukemia but recognized as a treatment for inflammatory bowel disease. It really, really helped me. Also, since Crohn’s inflammation tends to be non-contiguous, not sure if you know exactly the location of your inflammation, and I know that the difference between Crohn’s and UC is starting to blur, BUT if you have inflammation near your rectum (prolly not since Crohn’s is more in the small intestine, right?), then I would highly recommend using Rowasa retention enemas; they are a mesalamine drug and, essentially, act as a topical application and are highly effective in a short period of time.

    Hmm, not sure how much of this is applicable to your situation, but that’s all I’ve got! Talk to your doc about what you are going to use as long-term, maintenance drugs. Pred ain’t it.

    PPS – Early in my diagnosis I found tons of great info and support at http://www.ibdsucks.org/webx?

    • Amanda
      10/23/2011 at 3:14 pm

      Obviously everyone’s experience is different, and I don’t have UC so I don’t know what that’s like for you, but having been diagnosed with Crohn’s several years ago and having tapered off of the ONE medication (glucocorticosteroid) over a period of months under doctor’s direction, I have been medication free for over 4 years. I disagree with your statement that a person, or specifically this blogger, needs to be on a “back-up” drug or even a maintenance drug. Certainly while she is experiencing difficult symptoms and as long as her doctor’s want her to be, she should be on medication, but I also feel that should her symptoms be improving and she is able to methodically and cautiously taper to a lower dose over time, there is no need for a maintenance/back-up medication. The whole idea behind using diet/lifestyle to manage a disease is to reduce the number of meds and dosages required of those meds as much as is possible (determined by your level of healing).
      Second, my GI doc informed me early on that drugs will help one get out of a flare, but they will not necessarily prevent future flares.
      Mind you the above are my experiences, but it just demonstrates that there is no one-size-fits-all prescription of action.
      I encourage the blogger to continue being cautious with her diet and to continue to work with her doctor(s). Hopefully your doctor(s) is/are agreeable to helping you in taper at the right pace for how your body is healing. Remember, it’s better to go slowly even if you feel amazing, because going too fast can sometimes cause setbacks. Setbacks can zap your motivation, and we don’t want that!

      • 10/26/2011 at 2:46 am

        Oh, Amanda, that’s great that you are drug-free! And, yes, you are right, every case is different and yes, you are right, Jo may not need a maintenance drug. My mistake. However, despite being on the SCD for five years I have yet to successfully taper off all drugs. I think the whole idea behind using diet/lifestyle to mange a disease is to feel better. Whether or not one is able to reduce or eliminate drugs is out of our hands; some of us cannot, even with strict compliance. That being said, pre-SCD I was on a higher dose of medication AND getting worse. And I don’t agree with what your GI said about drugs helping to get out of a flare but not preventing one because every time I (again, me, my experience) get down to a certain level of medication, I flare. Thus, my drugs do prevent flares.

        Dx’ed UC 1996; SCD 2006.

        P.S. I don’t know why I’m not getting updates to this thread. I subscribed. Bummer.

        Good luck everybody!!

      • 10/26/2011 at 2:52 am

        One more thing… the reason I suggest a maintenance drug is because there a big gap leap between taking pred and taking nothing. Jo may or may not be able to get by with no medications. If she has to take SOMETHING, better to be on a maintenance drug than pred. THEN, once she’s off pred and doing well, she can fiddle with tapering off of the maintenance drug. Sometimes, when people are only on pred, they find it very very difficult to drop below 5mg or to get off it entirely, so a mesalamine drug, for instance, is the lesser of two evils.

        Have a good day!

  6. 10/23/2011 at 4:18 am

    Oh, gosh, ONE more thing! I don’t take ANY antibiotics unless I’m VERY desperate because they ALWAYS throw me into a flare! I’ve never had a doctor prescribe antibiotics to treat my inflammatory bowel condition except for the one time when I developed giardia.

    I can’t take anti-biotics, OTC pain relievers or prescribed muscle relaxers without developing a minor or full-blown flare.

    We are special. 🙂

    • 11/07/2011 at 8:06 pm

      Again, another classic example of specialization. Antibiotics make me a little less regular, but do help keep inflammation down and the pain, as long as I take small doses of them.

  7. APA
    10/30/2011 at 11:28 pm

    Shhhhhhhweet!!! Keep up the good work!

  8. 11/07/2011 at 8:03 pm

    To answer your questions Miss Nancy- yes, prednisone is the only drug I’m on, and just tapered to 15 mgs so I am on light doses. My inflammation is down, I’m feeling fantastic, and just resumed going back to work. With the diet and the predz, I am totally stable and living a normal life. Know I’m still inflammed, but am NOT having any pain and have 1-2 regulated BMs a day (kind of loose, but sometimes formed, which is a blessing to me, lol).

    The real test is what happen when I’m fully OFF the preds. This scares me.

    Some people can ride it out without drugs- some cannot. I’ve heard stories of both. There’s no right or wrong answer- and I’m hoping to be one of those that beat the odds and can live symptom and med free. Here’s hopin!

    Nancy N. (@senseofgravity) :

    Oh, Amanda, that’s great that you are drug-free! And, yes, you are right, every case is different and yes, you are right, Jo may not need a maintenance drug. My mistake. However, despite being on the SCD for five years I have yet to successfully taper off all drugs. I think the whole idea behind using diet/lifestyle to mange a disease is to feel better. Whether or not one is able to reduce or eliminate drugs is out of our hands; some of us cannot, even with strict compliance. That being said, pre-SCD I was on a higher dose of medication AND getting worse. And I don’t agree with what your GI said about drugs helping to get out of a flare but not preventing one because every time I (again, me, my experience) get down to a certain level of medication, I flare. Thus, my drugs do prevent flares.

    Dx’ed UC 1996; SCD 2006.

    P.S. I don’t know why I’m not getting updates to this thread. I subscribed. Bummer.

    Good luck everybody!!

  9. Marie
    12/26/2011 at 11:55 pm

    I love your courage and your blog. Have you used digestive enzymes with your meals? I do not have Chrons or UC; more like IBS (gas type pain; urgent stools sometimes). The digestive enzymes were critical for me. My pathogen was H-pylori and it seems to have damaged my ability to make enzymes, esp. HCL.

  1. No trackbacks yet.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: