Introductions

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JaimeNJ
JaimeNJ Posts: 51 Member
Please feel free to use this space to introduce yourself to the group.

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  • JaimeNJ
    JaimeNJ Posts: 51 Member
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    My name is Jaime, and I was diagnosed with Primary Sclerosing Cholangitis and Crohn's Disease about 8 years ago. I have always felt largely asymptomatic regarding Crohn's. I was surprised by the diagnosis, and I have never been one to need to run to a bathroom. My yearly colonoscopies have gotten progressively worse over time, and now I am at a point where my GI is concerned about the potential for developing colon cancer due to my seemingly constant inflammation. She wants me on Humira or Remicade. I don't want that, and since I feel like my lack of symptoms have contributed to me basically ignoring my disease, I made a case for trying to heal myself. She's letting me give this a shot, and I will have another colonoscopy in March. My goal, regardless of how realistic it may or may not be, is to impress her enough so that she'll back off of the new meds. Enter: SCD. I'm about a month in. Yesterday I did the intro diet for the day to try to reset myself because some weekend celebrating at a restaurant yielded heartburn, sore muscles, and fatigue. I am careful, but I think I took an unnecessary risk on Saturday.

    Please feel free to browse my food diary and comment as needed. Welcome!
  • justaspoonfulofsugar
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    Hi,it's Anjelina here..I have been eating paleo/primal for the last number of years but always falling back on sugar as a coping method as well as having what I consider to be a profound addiction to the stuff.
    I have not been diagnosed but believe leaky gut to be the culprit in my health.I took loads of anti-inflammatories for hip bursitis and things have gone downhill from there.
    I battle loads of stomach issues and when I came to SCD I was battling chronic d for the last 4 months,sometimes 8 times a day to the toilet.
    I am 5 weeks into SCD and feel so much better.
    I am still battling heartburn some days and some d but for the most part,I am coming along nicely.
    I still feel very limited in what I can eat and have introduced things very slowly.
    I don't log but I am here for any support needed.
    I am also a chef so can give chef advice with cooking/baking :)
  • kazzicles
    kazzicles Posts: 15 Member
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    My name is Karen and I was diagnosed with ulcerative proctitis in November after a sudden onset of abdo pain on the loo in July, followed by another one a month later (I presumed linked to my time of month) until two weeks after that I started seeing blood. Compared to some people in the support groups I think I am lucky to have fairly mild symptoms and been diagnosed early.

    I have also had weird (genetic) rashes my whole life that nobody's been able to explain and I just learned to live with them. Now I am pretty sure they are immune-linked.

    I am not a fan of western medication but I'm very interested in food! I've been a bit of a yoyo dieter for years and already decided that starchy foods and sugars weren't good for me in terms of weight. I'd lost 12kgs (26 pounds) this year before I got sick. Starting SCD was the challenge I needed. It gave me permission to cut things I didn't want anyway!

    I'm loving all the info and recipes I can find online and am enjoying experimenting with food. I'm on prednisone for 10 more days then I am excited to see how I will be off the meds because I believe in food as medicine. On SCD I've managed to shift an extra 3kgs and feel a whole lot better! My weird rashes are also not popping up as often, which is exciting because I can wear sleeveless clothes without being stared at - it's a hot summer in Australia right now!
  • bluesunshine999
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    Hi! Jamie here. I was diagnosed with Ulcerative Colitis in October. I started the SCD diet at the end of that month. I've been feeling good on the diet (also taking meds). I've been trying to follow the pecan bread stages and that seems to work for me. I'm starting stage three. I would love more fitness pal friends who are strict about following SCD so we can share food ideas. Please feel free to add me.

    Thanks Jaime for creating this group! ;)
  • WildPlace
    WildPlace Posts: 21 Member
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    Hi folks, i'm Yvonne - based in Scotland :-) First diagnosed with UC in 1992 but lucky enough to have 14 years remission until 2010 when my UC came back and that's when I discovered SCD. After falling off the SCD wagon several times and then flaring again in 2012, 2013 and 2014 I've given myself a good talking to and been strictly SCD since July last year.

    The results of my colonoscopy last year were grim - UC much more extensive than in 1992 and the GI wanted me on steroids and long term mesalazine - I said no, let me try SCD again and thankfully I'm now pretty much symptom free. I say pretty much because I have the odd day where I need to dash to the loo - but I think that's me being paranoid and forgetting what is actually "normal". My OH tells me some days he needs to dash to the loo and he is perfectly normal!

    Yes, @kazzicles I was getting a weird rash last year when flaring and like you I think it has to be immune linked as now i'm feeling good I've had no recurrence.

    I find i'm best when I stick to SCD legal low carb although my go-to treat is dates, butter and honey, warmed slightly in the microwave.

    Thanks @JaimeNJ for starting this group - haven't participated until now as I've been away from home on and off for a while.
  • kazzicles
    kazzicles Posts: 15 Member
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    Hey @WildPlace I'm sorry I never saw your post until just now! I hope you and everyone here are going well.

    A quick update on me, after 18 months strict SCD I just kept getting progressively worse. Finally through freakish serendipity I found out what was wrong with me. I have a rare genetic mutation causing an autoinflammatory condition called Familial Cold Autoinflammatory Syndrome. I'm pretty sure I never had colitis as my symptoms really didn't sound like everyone else. Just unexplained bleeding that I think was my body being worn down by 43 years of inflammation that amazingly can be treated with a drug called Anakinra. My condition is one in a million... so special lol. Nice to finally have answers and hoping some of the damage can be reversed but I'm not really sure about that yet. I only started Anakinra in June.

    So I'm not strict SCD any more but I do want to get back to 80:20 or even 90:10 because I still think low inflammation eating makes sense... but with a genetic mutation at play the food alone won't do it.

    Keep up the good work guys xx