Ulcerative Colitis Tips


Some people love the website & FREE Newsletter:

"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks. Kate"


Specific Carbohydrate Diet – 5 Month Update

Introduction:

23 yo male, living with bowel problems my whole life, diagnosed with Ulcerative colitis 8 years ago. My UC has been kept fairly under control the whole time with just Lialda, but recently the UC has started to take control. I am terrified of going down the slippery slope that is prednisone and remicade, so I’m trying to do this the natural way with the SCD.

Colitis Symptoms:

Bloody bowel movements (no D, just bloody) and a frequent urge to go.

SCD Diet Update After 5 Months:

I wrote here about 3 months ago about my adventures with the SCD and how I was improving but still seeing some symptoms. I wanted to give an update on how I am doing in order to give people considering the Specific Carbohydrate Diet more ideas about whether or not they want to try this diet.

Prior to starting SCD, my UC symptoms were probably better than most people’s. If I went somewhere and needed a bathroom, I was always able to hold it, and I never had any accidents. My BMs were formed about 50% of the time, and the other 50% being a bloody mess. I was going 5-6 times a day, but the number was rising. When I was first diagnosed, I was going 2-3 times/day, and I felt myself getting worse. I started SCD after crying myself to sleep for like a week straight, after realizing that I was going to feel like this every day. For the rest of my life.

Inspired by all of the success stories online, I started SCD 5 months ago, hoping to heal myself. I thought to myself that my UC was not as bad as everyone else’s, so I’ll probably heal quicker. Well, that didn’t happen. I am still nowhere near where I want to be. In the almost 5 months I’ve been on the diet, a lot has changed, but also a lot has stayed the same. UC is still in control of my life, and I still worry whether or not there will be a bathroom whenever I go somewhere. However, there are some definite improvements: I do not have abdominal pain in the morning anymore. I used to wake up with the worst abdominal pain that would only go away if I went to the bathroom. Now, that pain is gone. Also, about 90% of my BMs are formed now. There is still significant blood, but there is definitely less than 5 months ago. I am only using the bathroom about 2-3 times a day, and I have even had a few days when I only went once!

My typical day is usually waking up around 7am, with a breakfast of some dry curd cottage cheese and homemade yogurt with honey and homemade jam. My first BM is usually between lunch time and 4pm (which is pretty awesome — 5 months ago I would have gone two or three times by then). Lunch is usually some broiled ground beef with avocado, and dinner is some type of fish with squash or more beef patties. I will often use the bathroom after dinner, and then again before bed (and a lot of the time I will only go before bed). I usually snack on some bananas and almond flour muffins. Also, Adam is right, and that SCD smoothie is like the best thing in the whole world. Seriously. I have like 3 a day. It is a very bland diet, and have lost close to 30 pounds in the last 5 months because I don’t eat very much. I was pretty skinny before, so now I look… not so great.

So… what are my symptoms after 5 months? The way I described it in the above paragraph you would think everything was perfect. But it’s not. When I wake up in the morning, I still have to use the bathroom. It’s just not a strong enough urge that I end up actually going. Furthermore, while my BMs are formed, I frequently feel the urge to go very soon afterwards (maybe an hour or so). Again, this urge is not strong enough for me to go, but just enough that I can’t focus on much else.

I know I am lucky for my UC to be as mild as it is. I know from reading this website that a lot of people are much worse off than I am. Yet I am still terrified of my condition. I know UC tends to come back after many years, just when you think you are done with it, and it usually comes back much worse. I am worried that I am only feeling better because I am eating less, not because of what I am eating. I have promised myself to stay on this diet for at least 2 years. I am not a quitter, and I know that 5 months is not enough. The improvements I have seen have convinced me to keep going, and hopefully things will continue to get better.

Where I’d like to be in 1 year:

If not Ulcerative Colitis free, at least more convinced that the SCD is getting me there. I want to be certain that the diet is working, and that I am not simply feeling better because I am eating less.

Colitis medications:

Lialda

written by KK-SCD’er

submitted in the colitis venting area




SCD

27 Responses to Specific Carbohydrate Diet – 5 Month Update

  1. joanna October 13, 2012 at 10:09 am #

    hey kk-scder, i am following SCD/paleo/FODMAPS, too. i decided on a combo of all three because there were parts from each that i thought would benefit me. i’m only 2 months in, but i also still have a lot of symptoms- less, but they still make me scared to leave the house, and that is not living. i still have severe urgency and some light bleeding and pain with bm’s. my frequency has gotten down to about 5-6 a day where before it was over 12x a day. i agree that it will take a while to heal since elaine said to follow the diet for 2 years. i’ve already tried my hand at all the hard meds like prednisone, 6mp, and remicade, so i figured i had nothing to lose by trying this diet.

    my diet is usually eggs and veggies in the morning, fruit smoothie and nuts in the afternoon, and meat and greens for dinner. i might have more hardboiled eggs, nuts, sardines, beef sticks, or some more snacks throughout the day. it does get boring eating the same stuff all the time because of all the restrictions, but if it helps my symptoms, i’m okay with being strict. i haven’t cheated once since i started it.

    do you take supplements? have you looked into FODMAPS? i recently started eliminating FODMAPS because my dietician recommended it. i didn’t really know a lot about it, but apparently there are certain foods that can cause a lot of digestive upset due to their fructan and polyol content(i was eating most of them). i’ve had to eliminate a lot of my favorites like avocados, mushrooms, onions, garlic, apples, mangoes, pears, dates, raisins. it’s quite a long list but it’s worth looking into if you are still having symptoms.

    hope you keep improving, buddy!

    • TiiniTete
      Tiinity October 14, 2012 at 8:26 am #

      Very nice to hear from other month new SCDers. I am on month 3 or 4 now of eating vegetables, meat, fish and oil (olive and coconut). Sometimes I eat nuts, nutflours, fruit or SCD legal yogurt, but most of the time I don’t since I need more healing to tolerate it well. I love the food I eat and have grown into the habit of it, one great sideeffect is that shopping is way easier these days, check the veggies and then meat/fish.

      Have I been completely SCD legal since I started, no. I have of course tried to but my brain has really been playing tricks on me.

      I can really relate to you KK-SCDer since I haven’t either experienced a big improvement in UC sympoms. But I have noticed other points: My brain fog is gone (woohooo), I gained weight to a healthy level with an hourglas shape (more then before – this was a complete surprise) and my appetite is much, much better, also a lot of the pain is gone.

      I guess the body sets the agenda by itself. Probably there is many issues to address which I don’t realize are issues, with hormonal levels and similar.

  2. Bev October 13, 2012 at 2:40 pm #

    Hi again!

    Have you thought about adding a SCD friendly probiotic into the mix? Probiotics have worked for me and have taken away the pain , urgency, and frequency. Once in the morning for me, and that’s it for the day (BM, that is)! And, I have pancolitis! The whole colon. It feels like I don’t have UC at all any more, and I went from the worst flare ever…to total remissiom within two months. Maybe just get that good bacteria into the old colon with a probiotic, while SCD-ing, and that just may be the push you need to attain remission?

    As it happens, I don’t even follow any special diet. I eat whatever I want problem free! I don’t know whether the SCD diet would have worked for me or not, but I’m glad I tried the probiotic first, because I think it’s harder to change my diet than to pop a probiotic once a day. That’s just me, though.

    As for bleeding…that is never a good sign, I’ve realized. I added that L-glutamine powder (that body builders take), and the bleeding stopped completely withing two days! It’s so easy to take, you just mix a scoop into juice and drink it! That was a freakin’ miracle too!

    I don’t know whether I’ll flare again in the future or not…but I have a different feeling this time, that I won’t. I’ve never attained full remission with the drugs, so this is definitely different this time, and I am so optomistic!!

    Cheers:)

    • michael October 14, 2012 at 2:03 am #

      Hi Bev,

      I am 42 male British but living in Oz at the moment.

      I have had UC for 7 years an going through the usual pattern flares etc and 5ASA’a and steroids.

      Sorry to be a nusiance but can you advise in detail what you take and how you got into remission. How much glutamine do you take and when etc.

      Any help very much appreciated?

      Kind regards

      Michael

      • Bev October 14, 2012 at 7:35 am #

        Hi Michael!

        I take one 50 billion strain probiotic capsule with water, first thing in the morning upon waking (CRTITICAL CARE ULTIMATE FLORA by RENEWLIFE to be exact) and one scoop (the scoop comes in the tub of powder) of fermented L-glutamine powder mixed with a bit of cranberry juice before lunch.

        I don’t think that you have to but the exact probiotic that I take…it may not even be available there. A good vitamin store will be able to direct you in a good one for UC. It has to be a stronger one than a normal person without bowel problems takes…like I said…at least 50 billion strain strong. I can’t stress enough that one should give the probiotic some time to work. It can take at least a month or more, although with me, good things started happening almost immediately! As for the L-glutamine…I added that a couple months later because I still had blood in my stool. It was truly a miracle in that it stopped the bleeding within two days!

        I really still cannot believe that I feel so good. I feel completely normal and with no medical drugs to boot! I never thought I’d be where I am. You know how that feels, I’m sure. I was so completely hopeless before I decided to try the probiotic route. Am I ever happy that I did. I don’t know where I’d be if I hadn’t…probably would have had the surgery, because those meds do not agree with my body, that’s for sure!

        Like I said above…if and when I ever have a flare again, and I don’t think that I will this time, I will most likely just opt for the surgery. I can’t go back to those meds…I feel like singing this from the rooftops…I attained remission WITHOUT DRUGS!!! Who would have ever thunk it???

        Cheers, and all the best Michael
        Bev:)

        • Mike January 12, 2013 at 9:49 am #

          Hi Bev,

          Could you please elaborate on how much a “scoop” is? :)

          I’ve also had some good experiences with L-Glutamine after reading about it in Tim Ferriss’ “The 4-hour body”. However, the dosis that he recommends (for bodybuilders, that is) is WAY higher than what the instructions on my L-Glutamine say (5g/day). I wasn’t sure, so I took a teaspoon (after training) – didn’t see the connection back then, but looking back I felt very good at the time.

          Thank you!
          Mike

          • bev January 12, 2013 at 11:03 am #

            Hi again Mike…

            The ‘scoop’ was included right in the tub of the L-glutamine. You can take up to 8 scoops per day, according to the directions on mine, depending on your degree of ‘repair’ needed. It says, after a hard body building workout, or surgery, your body will need more repair.

            I only took one or two scoops for the UC bleeding…that seemed to do the trick…the scoop looks to be about a teaspoon or so…maybe a heaping one.

            Cheers
            :)

          • Mike January 12, 2013 at 1:33 pm #

            Wow, that was quick. Much appreciated, thank you!

      • Bev October 14, 2012 at 7:36 am #

        Sorry for the typo…you don’t have to BUY the same probiotic…not BUT…lol

        • Michael October 16, 2012 at 10:59 am #

          Hi Bev,

          Thank you very much for the detailed response, very much appreciated.

          Cheers,

          Michael

          • Bev October 16, 2012 at 12:24 pm #

            Any time, my friend!

    • KK-SCDer October 15, 2012 at 9:16 am #

      Hi Bev,

      I don’t take any separate probiotics, but I do make the 24-hour SCD yogurt, which contains LOTS of good bacteria. I have taken other capsule probiotics (SCDphilous, for example), and have seen mixed results. I will definitely look into the L Glutamine. Thanks!!

  3. UC Family Boy
    Uc family boy October 14, 2012 at 1:26 pm #

    Hey KK SCDer,

    8 years of UC vs 5 months of SCD. I think some more time needs to be done on the diet for it to be evaluated fairly but reading your story looks like there is good progress so be pleased.

    It’s hard as patience is required. I been on the diet for 6 weeks, I echo Bev on bringing in probotics if not already. I started probotics on the 2nd week but stopped as I had to resend some stool samples and only restarted it this week…and I feel the diet helps but the probotics via tablet or scd yogurt is as written in BTVC ‘the real magic..’ I introduced almond muffins and it didn’t go down well, so I took it out and after a day my BM were back to normal. I am on a low prednisone taper so I will learn more about scd in the coming months but set backs are expected.

    I also lost 1stone via a flare and colonoscopy prep so slowly starting to try and put weight back on – but I see it as re establishing my whole health. Almost like I have detoxed myself. I am seeing positive results and I expect to give it two years before really seeing the rebalanced gut working freely..

    Going off Bev advise previously I been on L Gut and found some uk based scd freely probotics. Again, have to give it longer to see results but I can say I feel it is more important to take my probotics than asacol as I do sense the probotics are working.

  4. Lisa OH
    Lisa October 16, 2012 at 5:11 am #

    I read in ‘Breaking the Vicious Cycle’ (SCD bible) that you experience full benefits of the diet in a year. Sounds like things are improving for you. Hang in there!!

    • TiiniTete
      Tiinity October 16, 2012 at 5:42 am #

      What I hear over and over is that: it took a long time to get sick, it’ll take a long time to get better! Patience, patience…

      • KK-SCDer October 16, 2012 at 6:12 am #

        Thanks guys, I really hope so. I guess I just expected the diet to ‘reverse’ my condition. In other words, I’ve gotten progressively worse over the last 8 years, so I expected my condition to start reversing itself. However, instead what I’ve gotten is a whole host of new symptoms which may or may not be diet related. Since I’m almost halfway to the one year mark, I was hoping to be about halfway healed, but that is absolutely not the case. Well, I’ll hang in there for at least 2 years. I really hope this works.

        • TiiniTete
          Tiinity October 17, 2012 at 3:58 am #

          I don’t want to be a wise ass but for me cutting out dairy, nuts and fruit was really good.. I eat it occasionally but not everyday, I try to have three proper meals a day with main part (more than 50%) of calories from fat and the rest from protein and vegetables. This mean that the plate is completely filled with vegetables on the side of the protein and the fat is not really visible since it is so calorie rich. I am not super good at digesting all the veggies but I figure I need them anyhow so a bit of discomfort is ok and believe you have to challenge your digestion a bit.

          What Erica says on the meditation it probably so true and just today I got the tip from SCDlifestyle of free meditaion online:
          http://www.buddhanet.net/audio-meditation.htm

          But I totally agree with you, I wanted to be much better by now! It’s several months! And it is exhausting to try to hack my own health and try to understand what is going on! But as you I’m not giving in now! Bring it on bitch, bring it on! Btw I was listening to some podcasts from SCDlifestyle when they talked about their first years and it was so helpful to know what it was like for others (who didn’t instantly get 100%).

          • KK-SCDer October 17, 2012 at 7:49 am #

            Hi Tiinity,

            Yes, I too suspect that I may have trouble with dairy and fruit (I am not eating nuts at all, with the exception of some almond flour, but I only have that about once every two weeks). I am trying to cut dairy out starting yesterday, so hopefully I’ll see if that helps. The problem is that I am getting kinda sick of meat (I never thought I could say this), and veggies take sooo long to make because I have to basically kill them in the steamer for me to be able to tolerate them. SCDLifestyle is very helpful, but also depressing because they make everything sound so peachy, like it worked for them immediately. A lot of the stories I read online were about people who within months were symptom free. That’s the most depressing bit. I thought that would be me. But the BTVC-SCD yahoo group people are extremely helpful, as is talking to people on crohnology.com. Good luck to you and I hope you feel better soon!!

          • TiiniTete
            Tiinity October 22, 2012 at 2:29 am #

            I started to eat vitamin D in the beginning of last week to cure a cold… I started by taking 4000 ie a day and my cold was much better until the evening, so I started to take 8000 ie a day, thats a high number if you compare with rda % BUT the body on a sunny day makes 10000ie… And funny thing is my UC symptoms are getting less and less, as well… And how much better.. Well I noticed I was thinking “something’s wrong, I forgot something” and I realized it was going to the toilet, that’s how big of a difference i felt…

            Now I guess we all have differences in what we need, but just wanted to share this information.

  5. Erica October 16, 2012 at 7:11 am #

    I was diagnosed with mild to mod UC two years ago and doing very well WITHOUT drugs. In fact, I have never taken them,I refused. I jumped on SCD right away and have never looked back. I only take a good probiotic every night before bed thats all. I make 1 or 2 smoothies a day along with a good meal either for lunch or dinner. I have flared onnce and it was after a stressful move. Started meditating to get my head straight. You have to be bigger than UC …..in my mind its gone. Been symptom free for long time. Visualize healthy intestines everyday. It has worked for me thus far…..Good health wishes to all.

    • joanna October 16, 2012 at 4:17 pm #

      erica, what does your daily meal plan look like? what probiotic are you taking?

  6. pam November 5, 2012 at 9:41 am #

    I cannot find dry curd cottage cheese anywhere. if anyone knows of where I can find some I would apppreciate it. Pam in Franlin, CT

  7. Efim November 26, 2012 at 7:03 pm #

    Hello there! So nice to hear words of inspiration from a person who has been battling with this disease almost as long as me. I have also been on the SCD for 5 and a half months now and I cant say Iv’e seen the improvement you have, guess its due to the fact I’m taking Prednisone for a year. Do you have any recommendations/tips for how to relieve symptoms? I have a strong urge and i run about an average of 9 times a day.
    Thanks!

    • KK-SCDer November 26, 2012 at 7:26 pm #

      Hello Efim,

      Maybe if you tell me what you are eating I can give you better advice. Remember, just because a food is considered SCD legal does not mean you can tolerate it. What have you been eating? Have you joined the BTVC-SCD yahoo group? There are a lot of very helpful people on there. Did you do the intro diet? For how long? The intro is very important! After the intro, add foods in one by one and observe your reaction. If you answer the above, maybe I can give you better advice.

  8. Michael November 26, 2012 at 9:50 pm #

    Hi All,

    I recently consulted with a geaat Dr. Medically qualified but also with a naturapathic bias. He wasn’t particularly cheap but he prepared a detailed report which has been really helpful. I have included some excerpts from the report below.Its not exactly SCD but I eally hope it helps any others suffering from UC. Cheers Michael

    I cannot stress enough how important a good diet is. It is a much overlooked and misrepresented area of treatment which is fundamental to success with ulcerative colitis and may need fine tuning with respect to testing foods for sensitivities and them avoiding those specific foods.

    You have a pro-inflammatory Thelper lymphocyte dominant condition. The aim of management is to suppress the over active immunity not only by using the right probiotic and also by settling the mechanism of inflammation, by eating the right food and understanding the gut flora and removing pathogenic elements be they parasites, fungi or excess pathogenic bacteria.

    With respect to the diet, you are already avoiding gluten foods which is a very good idea. Not only are you personally sensitive to gluten, but it is also a pro-inflammatory food due to the gliadin in the gluten.
    I recommend avoiding all dairy products due to the arachadonic acid in them, which is a precursor to prostaglandin formation. This is a strong pro-inflammatory eicosanoid.

    I would remove all red meat of every description, all pig meats, all small goods and only eat fish, tofu and very small well chewed pieces of chicken. As important as the food groups is how you prepare the food. I strongly recommend that you avoid frying or roasting your proteins (chicken or fish) aim to steam, cook in a hot pot with water and herbs (the water acts as an antioxidant) and cook on a low heat. Aim never to blacken your protein and only just lightly brown the food to be just cooked (on the rare side). This restricts free radical pro-oxidative formation and lessen the inflammatory potential of the food on an already inflamed gut. Grilled and fried protein which has been charred or blackened is a source of extensive free radicals which will further injure your gut and worsen your symptoms. Consider your gut as injured skin. The only things you want touching it should have a smooth silky texture which does not irritate.

    Tofu is an easy protein to digest and is anti-inflammatory. There are many ways to cook it including steaming, baking , sauté-ing and placing in a soup mix along with greens like a Tom Yam

    I would try not to buy commercially roasted food as you have been doing at lunch and either take your own from home or get steamed or raw protein as in sushi/sashimi.

    We discussed the use of grains. I feel that alkaline grains would be best ( buckwheat and millet). These come as buckwheat noodles/flour to make patties with an egg beetroot zucchini and herbs. There are a range of millet products from millet flour, to millet grain, millet cruskitts, puffed mille. Rice is always an option. It is slightly acidic but if you have it with many green veg which is alkaline, it should balance out.

    When you are symptomatic I would suggest to steam your protein and greens and avoid raw veg (but not steamed veg). Raw food can often aggravate things.

    We discussed the problems of drinking alcohol. It is very harsh on an inflamed gut and if at all possible better to avoid. Otherwise have an occasional drink when you are feeling your best and protect your gut with a dose of glutamine and Gut relief first and at bedtime too.

    • vaggelees January 12, 2013 at 2:45 pm #

      Michael, after reading your text I must admit ,as a pharmacist with uc, that your knowledge and understanding as a whole of uc pathology is excellent. Thanks verymuch for the info you shared with us. One small comment: I ve been on scd type of diet for a week
      now and in the same side I decided to stop 6mp completely and leave only mesalazine doses my findings are that I lost weight and also have less bloating…however I feel less energised , better to say I feel more filtered as a person…I.e less anger and less determined in my athletic activities. Maybe that has to do with cutting the coffee as well or maybe the diet leeds to a more normal perception of life as a whole. I believe that is one reason u get UC to start with…we do not filter life’s up-downs properly…

  9. Cory May 6, 2013 at 12:26 pm #

    Dear all,

    I began the SCD diet exactly 2 weeks before having the last foot of my small bowel removed. I had previously had an abcess and even after months of steroids and antibiotics, as well as visiting a naturopath I decided to take a different route. I understand the medical assumptions and known research on so called autoimmune diseases, and after tons of research realized that lifelong drugs were not for me. At the time of my surgery I had very little actual inflammation- it had been mostly dealt with by prednizone and antibiotics. However scar tissue had narrowed my ileum to the point of no return. I had been eating normally and heavily but was losing weight right up to the point of surgery.
    Enter SCD. You have to be so careful about food selection, you can never assume something is safe. It often takes a google search to find the safe items because others have likely done the research. On this diet I have gained 30+ pounds on a diet that is not set up for weight gain. I believe whole-heartedly that this diet will solve your problems. I have Crohns disease, which according to the book is the hardest fix. I did, however get the headstart of having the worst section removed, so I won’t let the diet take all of the credit.

    Now things to definately avoid:
    1. Coffee
    2. Tea
    3. Almond flour and nuts until you are essentially symptom free. Trust me here.

    Things you MUST include:
    1. The SCD Yogurt. This is essentially the mainstay of the diet, and is far and beyond any pro-biotic pill you can buy. Don’t believe me? Do the research.
    2. L-Glutamine. As discussed, this stuff will reduce your symptoms. Unless you have a liver or kidney condition load up on the stuff. I typically have a glass in the morning, and a Nalgene bottle with 2 tablespoons during the day, plus one more at night. I am only 4 months out of surgery and have more energy than I can reasonably expel in a day, not to mention the benefits to my immune system from the L-Glutamine.
    3. Fish oil and
    4. B Vitamins (SCD friendly- harder to find than you might think). These two are essential not only for gut health and digestion (in the case of B Vit), but also greatly increase mental alertness and completely erase “the fog” as some call it.

    My last piece of advice: DON’T CHEAT. I struggled for years with Crohns and had a diet that was 90% SCD figured out just by process of illimination. Unfortunatly I still cheated, and it was sugar and beer that caused a death spiral into creating an abcess. Look at it in terms of life and death: these foods literally are damaging you every time you eat it, and render the rest of the diet essentially pointless.

    By the way: I no longer have the valve between my small and large bowel. What this SHOULD cause is life long loose BM’s, trouble holding, and a plethora of other annoyances. On this diet I have more normal BM’s than people who don’t have IBD’s. Just my $0.02

    Cory

Leave a Reply