Ulcerative Colitis Tips


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SCD Not Working Anymore

Jess with two kidsIntroduction:

A 30 year old stay at home mom. I love boating, working out, shopping and most of all spending time with my sweet little family!

My Symptoms:

cramping, diarrhea, mucus, bloating, weight loss

My Story:

I was diagnosed with UC when right after I gave birth to my first born. I was having blood and mucus in my stools, but didnt have any pain at all. After my colonoscopy, I was informed I had a very mild case of UC. I was given some Canasa suppositories and that was pretty much it. The problems cleared up pretty quickly after all my hormones from pregnancy got back to normal. I never even had to use one suppository. Fast forward to this year, my pregnancy with my second boy was problem free and I hadn’t had any problems with UC. I pretty much figured UC was a silly little disease that really had no effect on me. WOW, was I wrong! I got pregnant with my third baby and was amazed at how much I was showing after 5 weeks. Turns out it wasn’t that I was showing, I was just about to begin a very nasty flare. All that show was actually just bloat from UC! I miscarried, and the same day began the worst flare. I couldn’t stand up straight, i had mucus, blood , diarrhea, and was in so much pain. I was put on steroids for 2 months. They made me feel awful, so I only did one month a vowed to cure myself with the SCD.

Jess at work

I am now one month into it. I was feeling great! After about 2 weeks on it, things were clearing up. Bowels movements were firm and there was no blood or mucus!! Unfortunately, i am now 1 month into it and all my symptoms are returning!!! Im scared. I have not cheated in the slightest! I was eating cheese, eggs and the yogurt just fine in the beginning and now I’m bloating, diarrhea, etc… Help?!?! Is it possible this diet just wont work for me or do you think the eggs and such are just too rough for me? Has this happened to anyone else? What did you do?? We really wanted to try for number 3 and im just so sad that this damn disease may take that away from us. I just knew this diet would answer all my prayers, but it looks like it may not! Any input would be awesome. Thanks for letting m e share my story.

Where I’d like to be in 1 year:

Symptom free and possibly with baby number three on the way. I just want to be healthy again!!!

Colitis Medications:

Lialda (2 a day)
Canasa (every single night)
Probiotics
SCD safe multi-vitamin

written by Jess

submitted in the colitis venting area




25 Responses to SCD Not Working Anymore

  1. Jen August 30, 2012 at 7:33 am #

    I have not been following SDC strictly for a long time, but I think I remember something in the book about right around the 7th week or so people often start to see symptoms again but that it will pass as long as you stick to your guns. Also make sure you’re not letting things (gluten, high lactose dairy, etc) slip in here and there, and you might consider cutting back on the dairy intake. Are you eating a lot of fruit? That could be causing issues too. Don’t give up though, if you need to go back to the very basic SDC diet from when you first started. I hope you feel better soon!!!

    • Jess
      jessica August 30, 2012 at 1:20 pm #

      I will definitely try to cut back on fruit because I do eat alot. It’s worth a shot for sure! Thanks!

  2. Adam
    Adam August 30, 2012 at 7:45 am #

    Dear Jess,

    I’m super sorry to hear you’re in a flare again and even more sorry to hear about your miscarriage. All of that must be a super high amount of stress you’re going/gone through. This disease is very tough, and it affects everyone in different ways.

    In terms of final outcomes, SCD does not work for everyone. That is the reality. But, because you had some positive results with SCD early, that is a great sign, especially if you attribute your previous progress to the diet changes you made.

    Although in my 3 plus years of using SCD (and 87% of that time I have been medication free like right now) I too have had several flare ups. In more difficult times, I’ve gone back on a low dose of prednisone with a slow taper which has worked wonders. Prednisone is something everyone either hates, or loves and hates. I’m yet to speak to someone who only loves it right… And its something everyone should talk to their doctors about in terms of prescribing and monitoring as its a very powerful and often under-estimated drug.

    Just remember, the symptoms won’t last forever, they too will end, and normal living will come your way again, and if you want baby #3, you’ll for sure get it.

    -Adam

    • Jess
      jessica August 30, 2012 at 1:19 pm #

      Thanks for your encouragement Adam! It’s good to know that even with the SCd diet you can still have flares. Maybe this is a small flare and it will smooth itself out soon. Staying positive and dedicated to the SCD diet for now. Just frustrated!

  3. KK-SCDer August 30, 2012 at 8:17 am #

    Jess,

    Do not give up on SCD after just one month. Most people with UC need to be on SCD for a minimum of a year before they can really feel better, and the whole time is _not_ a constant improvement. It is always 2 steps forward and 1 step back, and sometimes it feels like 1 step forward and 2 steps back. The fact that you showed initial improvement indicates SCD will work for you! Are you registered on the BTVC-Yahoo group? The people on it are extremely knowledgeable and willing to answer your questions. Do you read SCDLifestyle.com? Do you keep a food journal? Whenever I start to see symptoms, I always scale back to intro diet foods: eggs, meat patties, chicken soup. SCD is not an easy diet, and is definitely not a quick fix. You are _healing_ your body, rather than simply eating foods that your body tolerates. Take probiotics, S. Bouillardi (cautiously) and I would avoid dairy products if you are not feeling well, and possibly even the eggs. Try following the diet ‘stages’ on Pecanbread.com. I promise things will improve again (then they will get worse; then they will improve even more, etc).
    Good luck and good health!

    • Jess
      jessica August 30, 2012 at 5:48 pm #

      I have never been to BTVC-Yahoo or pecanbread.com, so i will most definitely go check them out. Im not giving up yet! Just so frustrated with things! I do agree that I need to give it a little more time. Thanks for the info! Im glad to hear others have had the same experience as me with the SCD diet. It keeps me hopeful!

  4. linda langkow August 30, 2012 at 8:53 am #

    Jess – I also extend my sympathy for your loss. My 19 yr old daughter started the SCD diet 9 months ago. She had some minor set backs the first few months but persisted. She is fanatical about following the diet to the letter – and we have found that using raw milk (both cow and goat) and lots of naturally fermented foods helps a ton. She also eats only organic. Getting and preparing her food is almost a part time job – but she is feeling so much better and stronger, no meds and can do ballet 4 -5 time a week (which is her love) She recently found out the yogurt she was making herself (the 24 hr method described in the book) wasnt totally at the right temp – so she has ordered a dehydrator to do it with.

    I wish you encouragement because with 2 small children you are busy but it will be worth it to continue the SCD diet..also how healthy for your kids to eat the foods as well!!

    My daughters story and SCD hints are at empoweredsustenance.com.

    Blessings..
    Linda

    • Jess
      jessica August 30, 2012 at 1:16 pm #

      Is she drinking the raw milk regularly or just using it to make yogurt with? I will definitely check out the website. Thank you.

  5. Jess
    jessica August 30, 2012 at 10:31 am #

    Thank you all for replying. It’s so helpful to have people to turn to for questions as well as compassion. I really have been super careful. My son has celiac disease so any gluten containing food is pretty much banned from the house. I do, however, eat alot of fruit, so maybe Im just eating too much like you said? It’s such a difficult diet to nail down just right. Am i eating too much fruit, too much eggs, too much cheese…i dont know what the answer is?? Did it take some time to get things exact for you all? So far, I havent given up on the diet, so im just praying it’s some weird fluke and things will calm down again. Unfortunately, as of today, they have not. It’s just weird that everything seemed to be improving so well in the beginning and boom, right back to where I was. I will admit that I do have a very dry glass of red wine here and there which didnt seem to bother me in the beginning, but now maybe my body is saying something? I’ve got two active boys …momma needs a glass of wine sometimes…lol!! Plus, since it says wine is okay in the book I just sort of assumed it was? Thats the only thing I can really think to eliminate. Again, thanks for your responses. They are much appreciated.

  6. Dede Cummings August 30, 2012 at 2:52 pm #

    Hey Jessica, First, you are awesome, and being a stay-at-home mother is a hard job :) I think Adam, and others, are right on—in terms of flare-ups when being on the SCD. I had a really bad flare-up this summer, went on Prednisone (Made me VERY jittery—I hate the drug, too, but this time I practiced yoga, meditation, got a massage, etc., and walked every day….so it was better!), then I tapered off and the flare went away. Since then *June* I have been super careful, and things are okay. I know that pregnancy and hormones can really exacerbate UC and Crohn’s disease symptoms. Your body is in overdrive and autoimmune diseases can wreck havoc on you when you are run down. I would also recommend seeing a naturopathic doctor (make sure one from a four-year college that is accredited) to help you boost your immune system. (My insurance pays for the visits here in Vermont, but each state is different). You can take extra iron, Vit. C, D. B, probiotics, omega 3…. I would get an expert naturopath to help you with dosage and all. I would probably hold off on the red wine and coffee and practice the most basic form of dietary support: at least until you get things settled down. I use organic chicken stock, and make a homemade chicken soup (or buy an organic brand), I eat the basic: yogurt, bananas … stuff like that, too. And fruit can be an irritant when in a flare. Try to get lots of sleep, maybe do a yoga class, exercise daily, join a support group, get help with the kids …. Good luck!!! Keep writing with questions. This site is awesome!

    • Jess
      jessica August 30, 2012 at 5:42 pm #

      Wow thanks for all the awesome info! I will be sure and look into a naturopathic doctor in my area. I just went to see an accupuncturist this week for the first time. Since it’s only been one visit I have yet to see any results, but I have my fingers crossed. He also does alot with Chinese herbs. He sent me home with a bottle but im just so nervous to add anything else to my system. One of my friends swears by him, but im scared. I never want to go on steriods again and the other medications offered for UC are just too intense for me. Have you had any experience with Chinese medicine?? Again, thanks for all the info!

  7. Trevor W August 30, 2012 at 5:09 pm #

    I’ve been on the diet for about 2 months now. I had the exact same thing happen to me. First little while was great but then it came back a little.

    What I did was I started the intro all over again for 4 days. Then I slowly introduced new foods in stages. I would stay away from cheese for now and just have eggs, meat and have all your veggies cooked as well as your fruits. That worked wonders for me. I’m doing pretty well now due to this.

    After intro:
    Cooked SCD fruits and veggies
    Well cooked meats, fish.
    No more than 3 cups of 24hr fermented yogurt a day
    lots of water (I have 2 liters a day)and some probiotics ever morning (I use DR.MERCOLA)

    After a couple weeks, I introduced a lot of nuts for protein and cut my meat intake down. I get 1-2 BM a day now and they are all fully formed stools. Little blood here and there, but much better than before.

    Also, if you haven’t done so already. Buy some SCD recipe books! I have 3 different ones I got through Amazon which are REALLY INSPIRING and MOTIVATING to cook and make some really good meals for yourself. Don’t give up! I almost did, and now I’m thankful I didn’t, because that day when things balanced out, was just around the corner.

    GOOD LUCK!

  8. Trevor W August 30, 2012 at 5:13 pm #

    Also…..could it be the medication causing the issues? Try weening off them and sticking to the diet and see if that makes a difference. I swear…some of those meds makes colitis worse.

    • Jess
      jessica August 30, 2012 at 5:45 pm #

      Ya know, i’d love to! They obviously did not work for me. Something to definitely think about… I think i’ve just used them as a crutch for so long, that it’s scary to think i could go right back to where i was.

  9. Kristin
    Kristin August 31, 2012 at 8:13 pm #

    Try to hang in there Jessica. My daughter suffers from UC and had been on SCD for 4-5 months now. She has had two colonoscopies. The first was performed when first diagnosed. She was treated and went into remission. A month later she flared again and we couldn’t get it under control. She ended up in the hospital and had another colonoscopy. I was terrified that the inflammation had spread and could possibly even be crohn’s. To my surprise there was less inflammation than the first time around. I give full credit to the diet. She even had a small flare two weeks ago and i thought our nightmare was starting again. We were able to control it by going back to basics. It never progressed and I am not seeing any blood right now. I know how stressful this disease can be. I have cried more in the last 6 months than I have in my entire life but I have faith in this diet. I have seen it work for my daughter. Good luck and keep your head up for those precious babies.

    • Jess
      jessica September 11, 2012 at 10:36 am #

      I just want to thank you all for your support and advice. Im sorry i’ve been MIA as it’s back to school around here. Im still not feeling as well as I thought I was going to at the beginning of the diet. I seem to have to go right back to the basics each week. I guess I may be just adding too much too soon?? I cant help but worry that maybe this diet just doesnt work for me. I am however, going to stick to it. I figure if I feel this bad on the SCD diet, can I imagine what I would feel like not on it. I have an appointment with my Gastro doctor tomorrow and am hoping to schedule a colonoscopy. Can you believe I just said hoping to have a colonoscopy??? Crazy!! Again, thank you all for your inputs. It is so appreciated. Now one more question, but has anyone tried juicing?? Any positive results?

  10. Jennifer September 1, 2012 at 12:53 pm #

    I’ve been reading about acidity and alkalinity in the body, and how acidity creates a lot of illnesses. Acid-forming foods include animal products (plus the usual culprits of grains, sugar, alcohol, etc)… so you might cut out eggs (I couldn’t eat eggs in a flare) and also dairy which is mucous-forming. Peel the skins off your fruit (fiber is a big irritant) and cut down on fruit overall if you can to lower your sugar intake. You might try buying some Ph strips to test your body’s acidity… if it’s high, try reading The Ph Miracle. It’s another diet like SCD that has cured many people of various illnesses, although some of the recommendations like raw veggies don’t work well for IBD’ers in a flare. Good luck!

  11. Dede Cummings September 4, 2012 at 2:32 pm #

    Hey Jessica, I is scary going off meds. I was a wreck going off Prednisone…. But I kept the focus on healing and my mantra when I did my daily mediation was “White light healing, inflammation gone.” I know it sounds corny, right Adam??? :) but it kept me focused. I believe we are connected through our cells, through our spinal fluid, etc., I just watched the Movie, “I AM,” and cried so damn much :) It is so sweet! … I do feel a kind of connectivity with the universe I never felt when I was sick with Crohn’s and UC—I was always stressed! Take it one day at a time. I like the idea of the SCD, and talk to your doctor about it. Maybe you can be closely monitored while you go off the meds and just rest your bowels and then introduce the simple foods that Travis and Kristin and others recommend, then go back slowly to adding protein, eggs, etc. It is funny, because I ate like ten boiled eggs the first week I came home from the hospital! My body craved them!

    as far as acupuncture and Chinese herbs: It is normal to be wary of it, and rightly so. Listen to your body. If it says hold off on taking the herbs, don’t do it, but acupuncture is the BOMB! I love it, and it really works :)

    How are you after the long weekend?

    • Adam
      Adam September 4, 2012 at 8:03 pm #

      Come on Dede, its not possible to be corny up there in Maine:::)) Do they even grow corn up there? :)

  12. Steve September 6, 2012 at 4:02 am #

    Hey Jessica…I have to agree with the other posters here. I especially like what Trevor said about going off the medications and seeing if that helps, as the medications always have ill-intended effects. I’ve had them cause my symptoms to worsen rather improve so yes, while scary, it might help a great deal UC is your body’s way of saying, “I’m not well right now so I need to get this toxic stuff out of me.” The medicines stopping that natural response often only makes it worse or hides it until the body defeats the medicines.

    I also like what Jennifer shared about acidity and acid forming foods. It is so true and worth taking a look at because it may just be your body not tolerating certain foods at this point(you may be allowed them in the future again)…but avoiding mucus forming foods will go a long way. I’ve never tried acupuncture myself—yet—but any meditation/yoga/acupuncture is an idea. The mind is so very much tied to the digestive system unlike any other systems.

    As far as the fruit, I’ve never had issues with too much but it depends a lot on what/how you are eating it. Fruit digests faster than others and will ferment if in the gut when other foods are, there by causing distress that was totally unintended. Certain skins and seeds can also cause distress. Anyway, if you have any questions, hope to hear from you. I’m sure you’ll find a path to beat this so keep fighting the fight. :) Steve

  13. J September 6, 2012 at 1:04 pm #

    I am a 60 year old woman who has had UC for 40 years. The SCD diet really helps me. I take 2 Lialda caps per day and use the RX probiotic VSL #3. I feel well and am technically in remission. I bike and am very active. Hang in there and I hope you feel an improvement soon. I do disagree with the folks who suggest not taking your meds. I think the risk of a severe flare is more dangerous then then the medication.

  14. Kristy September 8, 2012 at 3:33 pm #

    Hi Jessica! I too was diagnosed with UC after the birth of my first child and also received the “mild” UC diagnosis. I had minor flare ups for a few years until last year when I had “the big one”. It was truly awful and never knew I could be that sick with UC. I was on Azathioprine, prednisone, lialda, and enemas all at once and it still took well over 6 months to get it under control. I was still having flares being on Azathioprine and finally I thought to myself that this is crazy! So in May I started the SCD and weaned off the Azathioprine. I had the same experience as you the first month and even to this day (4 months in) I am still having minor flares. BUT, I FEEL SO GOOD! It is such a hard diet and yes, I would love to be one of those who could say after 1 week on the diet ALL my symptoms subsided and never came back! But I realize the nature of this yucky disease is such that it may not happen, but if I FEEL good and can at least control the flares with Asacol and enemas and the flares are shorter in length then this diet is worth it! I wish you the best of luck and keep the faith! I say that to myself everyday!

    • Steve September 8, 2012 at 4:43 pm #

      Keep at it Kristy! You’ll get there…are you taking any probiotics along with eating SCD?

  15. Beth TImken September 21, 2012 at 7:42 pm #

    Hi Jessica, Our 24 year old son has had IC. My husband found out about SCD right away (he is a superb researcher). I too remember reading about the temporary setback after @ 2 or 3 months(I don’t remember the exact time frame).

    One resource I would highly recommend is Lucy’s Kitchen which specializes in SCD supplies: http://www.lucyskitchenshop.com/ We ordered many of our SCD products there, but what was REALLY helpful was Lucy herself. She suffered with UC for at least 7 years,then found SCD and has been on it at least 13 years. I was terribly distraught when our son’s symptoms varied and she was a great encouragement. She said SCD was a long term process. She said it was a slow process with stops and starts, gradual improvements month by month. Not to worry if there was still diarrhea and blood…is it less and less as the weeks and months go by. She finally had the last bit of blood gone from her stools after 5 years. I always felt it was worth ordering from her for the support and experience she gave.

  16. Lindsay March 18, 2013 at 7:59 am #

    Hi Jess!

    I’m 25 years old and have had UC since I was 12. About a year ago I had a really bad flare that put me in the hospital. I was on multiple medications, including apriso, prendisone, and imuran. With all of that still not working, Remicade looked to be my next option. I started looking for alternative options to treat my UC and came across the SCD diet. I also started seeing a naturopath after a friend had suggested it. I was skeptical at first (especially because I have a career in medicine), but I figured I had nothing else to lose. My naturopath changed my life! I saw that you were considering this, and I highly recommend it! She started me on multiple supplements that decrease inflammation and boost your immune system. I combine that with the SCD diet and daily exercise and I have been symptom free since about 2 weeks after I started this combo. I know it’s not for everyone, but it worked so well for me :)

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