One year on SCD — still going strong

Introduction:

I am a 24 year old graduate student. I spend my days working on my Ph.D thesis, watching tv with my lovely fiancee, and preparing SCD-legal food.

Some more about me:

I don’t really have any hobbies. I don’t have spare time as I spend my days doing physics research and buying and cooking and eating SCD legal food.

Symptoms:

Tenesmus
2-3 BMs/day, mostly formed
Occasional blood, but none after the first wipe.

One Year on SCD

May 15, 2013 was a special day for me, as it marked my one year anniversary on SCD. I wanted to take this opportunity to write down how I felt before I started SCD, how I feel now, and what I hope will happen for the future.

Let me first go back to my diagnosis. I was diagnosed in 2005 with Ulcerative Proctosigmoditis after several sigmoidoscopies and a colonoscopy. My symptoms began when I was 1 or 2, as my parents tell me that I was having far too many bowel movements a day even before I was potty trained, and after I got potty trained they knew where every single bathroom in every single shopping store was. Things settled down for a bit as I was growing up — I never knew something was wrong with me. Around when I turned 12 or 13 I noticed some blood after wiping. I thought that maybe I had cut myself or something, and I thought nothing of it. A long time went by. I don’t remember how, but my parents found out about this. Maybe I told them, or maybe I forgot to flush once, but they found out and freaked out. They scheduled an appointment with a GI, and we went through the litany of blood tests and various -scopies that are all too familiar to an IBD patient. I was fortunate in that my GI diagnosed me relatively quickly — I know a lot of people go years without a diagnosis. So, in 2005 I was told I had Ulcerative Colitis.

The day I was told this, I distinctly remember my mom asking the doctor if there were any foods that I should avoid. I remember the doctor shaking his head, saying that no, there was no evidence that food had an effect. I also distinctly remember not caring. My only symptom at the time was a teeny stripe of blood on the toilet paper. I didn’t really care. So what? It didn’t affect my life at all. My doctor put me on Asacol, and I went on my way. I don’t remember if the Asacol helped or not. I do remember that for the next 2 years Ulcerative Colitis played absolutely no role in my life. It didn’t affect me at all, as all I had was still this tiny stripe of blood on the toilet paper. I was having 2 bowel movements a day, one in the morning, and one at night, and I simply didn’t care. I didn’t even bother taking my Asacol most of the time (I later switched to Lialda, which was cheaper). During follow up visits with my GI, that I was told that ” many people with colitis lead completely normal lives”. I remember thinking — how is it possible to NOT lead a normal life with colitis. What the heck is so difficult about it? I thought this until 2007.

I started college in 2007. My daily schedule totally changed. My diet totally changed. My living conditions totally changed. Everything totally changed including my bowel function. I started having 3-4 bowel movements a day. Frequently, I would go before I was ready, knowing that I had an hour long class coming up, and not knowing if I could make it through the class. I would go if I thought there would be no bathroom available. My symptoms started to worsen. Every morning I would wake up with horrible stomach pain that would only go away after I went to the bathroom. My morning bowel movements were formed, but all subsequent ones were a toss up. I had to go every single night last thing before going to bed. If I went even 30 minutes prior to going to bed I would get so stressed out that I would get gassy and have to go again. This was the first time I realized what ulcerative colitis really was.

By my junior year of college I was having 4-5 bowel movements a day. I was constantly in a state of ‘having to go’ — in other words, I never once had an accident, but I always felt pressure like I had to use the bathroom. My days were spent ‘holding it in’. I saw my GI that year and said that things were getting worse, was there anything else that we could do? He suggested 6-MP. He listed a lot of the side effects, but said it was a much stronger drug and I’d feel a lot better. I agreed. Fortunately, my parents disagreed. They were afraid to try 6-MP precisely because of the side effects. At the time, I was really angry at them because I thought that they didn’t realize how bad I was feeling. I felt like they thought I could just ignore it and it would go away. But nevertheless I agreed to not use 6-MP. I just started taking my Lialda more religiously, never skipping a day.

I graduate magna cum laude with a degree in physics, despite being terribly sick. It was difficult for me to make friends in college for all of the usual reasons — anxiety of social situations, lack of bathrooms, not feeling well, etc. I was able to get straight A’s (only 1 B all 4 years) and get into graduate school. During my second semester of graduate school, things got really bad. I was having 5-6 bowel movements a day, which doesn’t seem like a lot to an IBD patient, but the fact is that the rest of the time was spent in a persistent state of ‘holding it in’. I couldn’t function. I never felt relief after going to a bathroom. Stuff would come out that wasn’t quite diarrhea, but wasn’t quite formed either, and I ALWAYS left the bathroom having to go more than when I went in. I was under lots of stress, for many reasons, and I was really scared. This was the first time I became proactive about my disease.

I first discovered SCD some time in the Fall of 2011 on the iHaveUC website. Adam’s videos of himself treating his colitis with the SCD stirred some hope in me. But then I looked into what it entailed. Giving up bread? Rice? Sugar? Homemade yogurt? I could barely cook pasta and they were telling me about making my own yogurt. Why the heck couldn’t I just buy some at the store? I thought SCD was an interesting idea, but I didn’t get around to trying it.

In the spring of 2012 I hit rock bottom. Lying on my parents couch, after the umpteenth time of going to the bathroom and my stomach pain not going away, I called my girlfriend, with whom I was living at the time. I broke down and told her that I just couldn’t do this anymore. I couldn’t live like this. I wanted to try SCD. I begged her to make me some of the 24 hour homemade yogurt according to the instructions that I sent her from the website. I would be at my parents house for the weekend, but I would be back Sunday night, and could she make me some of the yogurt? My wonderful, amazing girlfriend, who is now my fiancee, spent the next day buying the equipment — a thermometer, the proper yogurt starter, which I later learned is only available in 1 store in a 30 mile radius of our apartment, and a heating pad. We did not have a yogurt maker. The only heating pad she could find turned itself off after 2 hours, so the poor girl spent the entire night waking up every 2 hours to turn it back on. I was grateful beyond words. When I got back, we made some chicken soup, and I went on the intro diet on May 15, 2012.

At the same time, I ordered the book, Breaking the Vicious Cycle: Intestinal Health Through Diet, which describes SCD. I read it cover to cover in one day. It made so much sense to me. Perfect sense. I won’t go into the details here. They can be found all over the internet. I understood immediately that SCD had to work. The science made sense. For the first time in 4 years, I had hope for a better future.

I think its definitely a sign that you have hit rock bottom when you commit to a diet like SCD 100%, no cheating, and are able to follow through. My first year has been difficult beyond anything I could have imagined. Not restraining myself from eating SCD illegal food — I have never been tempted. The difficult part for me has been making sure that I have SCD legal food available a few days in advance, and the awkwardness of abstaining from eating at social events. I have not had craving for illegals all year.

What has 1 year on SCD been like? Within 30 days the morning pain was gone. I say that because in my food diary, on day 45, I have written in that I had pain in the morning, as if this was unusual for me. I simply did not have stomach pains in the morning, unless I ate something that was too advanced for me. I was having between 4-6 bowel movements a day, and my weight was dropping fast. I was not eating enough. But the fact that my stomach pain had disappeared was enough motivation for me to continue. I started to go to the bathroom less frequently. My first bowel movement of the day often came in the afternoon, between 2 and 5pm, even though I woke up for work at 7 or 8 every day. After a few months I figured out how to eat enough during the day so that my weight stabilized. I went from 180 lbs to 155 lbs, but it was ok, because I was feeling better. I was having 2-3 bowel movements a day. To be sure, I was still perpetually in a state of ‘holding it in’. My trips to the bathroom were not great. I fluctuated between formed stools and diarrhea, between feeling better after going to the bathroom and not feeling better. I suffered from horrible tenesmus that began right after I had a bowel movement. But I was going to the bathroom much less frequently, and that encouraged me to continue. I experienced many flare-ups over the course of the year, but they were never ever as bad as what I went through prior to SCD. At the one year mark, I am having 2-3 bowel movements a day, mostly formed, with minimal blood, and frequent tenesmus. I usually wake up around 8 feeling a slight pressure like I have to go to the bathroom. When I get to work around 9 I forget about this pressure and I end up going to the bathroom for the first time sometime between 2 and 5pm. I then sometimes have another bowel movement around 8 or 9pm, and finally again before bed. The first one is always formed, the second and third bowel movements are sometimes formed and so metimes not. All are accompanied with a hint of blood, but the amount of blood has been steadily decreasing all year. I have tenesmus after my bowel movements, but I feel as though this has been improving as well. My bowel movements also have been quicker. It used to take me half an hour to have a bowel movement. Now it usually takes me 15 minutes. For the first time in god knows how many years, I feel better after a bowel movement than I did before. I actually feel like I have ‘relieved myself’. I’m extremely happy with the results so far.

I should also mention that 2 months ago I had a reaction to Lialda. I went in for a routine blood test and they discovered that my creatinine levels were too high. I mentioned this to my GI, who took me off the Lialda immediately, as Lialda is known to (rarely) cause this type of problem. I have been off all medication since. I went in for a checkup recently and my creatinine levels are back to normal. I have not had a flare-up since quitting medication. SCD has allowed me to feel great without the use of drugs. SCD has also allowed me to sleep better. I used to spend hours at night tossing and turning and trying to sleep. I fall asleep much faster now, with much less tossing and turning. Just another side benefit to SCD.

I have been sick for over 10 years, but on SCD for just one year, so I know I have a long way to go. It makes me tremendously angry that I was never told about dietary modifications as an option by my doctor when I was first diagnosed (or ever, for that matter). Yes, the studies are not there for SCD (there is nobody to fund them). But doctors should at least mention diets like SCD, Paleo, and GAPS, instead of repeating the jaded line that ‘there is no evidence that diet plays a role’. I wish just one doctor would say ‘there is no evidence that diet doesn’t play a role’. Both of these are true statements, but one of them takes control out of the patients hands and gives it to the doctor, and the other puts the patient in control of their own health.

Another thing that makes me upset is when people say that they tried SCD and it didn’t work for them. When they go into detail about their experience with SCD, one of several things has always occurred — they were only on SCD for a few months, or they stuck to SCD 100%, but snuck the occasional illegal food every once in a while, or they modified SCD to include , say, cream for their coffee, which they just could not give up, or they ate advanced ready-made SCD legal food, such as Larabars, before they were ready for them. These are people who are not truly ready to take control of their health.

Many people are still looking for a magic bullet that they can swallow and it will cure their condition, or, at least, ameliorate many of their symptoms immediately. But this is not how it works. If you take a picture of an IBD patient’s GI tract, you will see a tremendous amount of damage. Ulcers and strictures and various other things wrong with the colon. Pills, injections, random things like tree bark, and other ‘panaceas’ will not fix these. SCD is a lifestyle that allows the GI tract to heal itself. You see, these pills and injections tell the body to stop producing the inflammation, so patients frequently feel better from them. But they do not address the question of why the patient’s body is producing the inflammation to begin with. SCD addresses this. By removing certain things from my diet, I am removing the reason for my body to produce this inflammation. The remaining step is to wait for my body to heal, and this takes an amount of time proportional to how long I’ve been sick.

I have not had a colonoscopy since I started SCD. I am planning one for sometime in the next year. Hopefully I have not jinxed myself by writing this. I am not sure how much healing has taken place in my body, but if I never get any better than I am today, and I have to stick to SCD for the rest of my life just to not get worse, it will be totally worth it. I feel great, and I look forward to how I will feel after another few years on SCD.

Medications:

None!

written by KK-SCDer

submitted in the colitis venting area

20 Responses to “One year on SCD — still going strong”

  1. Kristin
    KristinMay 28, 2013 at 6:19 am #

    Wat to go! Reading stories like this one really want me to get up and cheer! We have also found success with SCD for my daughter. It’s a long road and one we may be on for the rest of our lives but so worth it. I too hope that some day doctors will recognize the importance of diet and put that option on the table for their patients.

  2. ColleenMay 28, 2013 at 6:41 am #

    Hi KK-SCDer,
    I’m also celebrating one year on SCD this month. It hasn’t always been easy, but I’m so glad I’ve stayed the course. I’ve had a number of ups and downs over the year, but I committed myself to sticking to it for two years (the amount of time EG says it may take for UCers to see substantial healing), no going back, and now a year down the line I have a sense of my life back. Are you taking any supplements as well? Bev’s protocol of a strong probiotic and L-Glutamine have helped accelerate my healing. I’ve been pretty restricted to a small number of legal foods on SCD this past year, but still OK with it as I was just happy to be slowly getting better, and stronger. But now that I’m doing even better, I’m able to eat more (some nuts and fruit, for example) and it’s broadened my SCD experience even more. This is not a restricted diet once you can enjoy all the legal foods. The options are endless. Yes, it can be a lot of work with all the food prep. And yes, it can take a while for some of us to see results. But yes, it works. And it’s worth it. And it’s damn delicious. Congratulations on your one-year mark–and props to your fiancee for that first batch of yogurt!

  3. alexMay 28, 2013 at 9:42 am #

    Kk,
    Thanks so much for your story. It is identical to mine in quite a few ways. Im about a year and a half down the scd trail, and want you to know that I am still improving. I just want to drop a quick suggestion and you can do with it what you like. About 2 months ago I started taking a product called “intestive” and it has helped me with that last bit of blood. I have never found a majic pill either , but there are some supplements that I take which I believe have been beneficial. This one is also quite tame as far as ingredients. Started to really help me in about 2 weeks. Good luck on your journey, keep us updated on your success!

  4. Don
    DonMay 28, 2013 at 12:03 pm #

    Great story KK and very similar to my experience. I was diagnosed in 2007 With UC and found great healing on the SCD. I screwed up and ate illegal food after 2 years and ended up sicker than the first time. It’s been a rough road but I am finally seeing results again and slowly getting better. I too get really angry when I think of the arrogant doctors who tell me that diet has nothing to do with this condition. I have proved them wrong. When I went off the diet and got sick again I told the doctor and he said it was probably a coincidence that I flared! Such BS! I refuse to take their drugs. I had a doctor kick me out of his office because I stopped taking Asacol. Must have been cutting into his bonus!
    Later,
    Don

    • bevMay 28, 2013 at 2:13 pm #

      Hurrah!!

      I have had that same experience with my GIs that I have seen over the years. God help me if I try something on my own…and then it works!! The doctor is pissed right off…unbelievable, huh? I am in remission for well over a year now, ON NO MEDS, only on a good probiotic and L-glutamine…and the unimpressed almost offended doctor told me that I was just probably ‘out’ of the flare…by coincidence…that it was going to end anyway. I was so sick on the meds, and as soon as I stopped them, I felt human again. I don’t see her anymore, needless to say…I take care of myself these days.

      I too refuse drugs for this condition. Never again!

      Cheers to you, Don.

      Bev
      :)

  5. bevMay 28, 2013 at 2:08 pm #

    This is so fab!!

    Trying anything natural takes time….that’s why we have to stick with it. People bail out too soon a lot of times, I think, and don’t give natural things, or the SCD diet, time to really heal.

    Such great news KK-SCDer!!

    :)

  6. SCDer4LifeMay 28, 2013 at 2:15 pm #

    Yay for you KK and thanks for sharing. I am about a year in GAPS/SCD and it has made a tremendous difference in my UC (or lack thereof now). I actually consume a lot of homemade bone broth (GAPS) and grass-fed beef and pastured chickens (Weston A. Price Foundation – WAPF). Living this way is wonderful, and it has became a way of life for me. I see it as, I’d rather pay for good, quality (organic, non-gmo) food as opposed to paying the doctors and prescriptions.

    Once again, congrats on your success. And, I wish everyone (gastrointestinal disease or not) had the will power to eat this way. America would be much healthier.

  7. JayMay 28, 2013 at 4:13 pm #

    Bev, are you doing the SCD diet or just taking the probiotic and l-glutamine?

    • bevMay 28, 2013 at 6:18 pm #

      Hi there Jay,

      No diet at all…just the probiotic, L-glut, and astaxanthin. I’m so fortunate…I know…I only have to watch my wheat intake. I can’t eat a lot of wheat, but that’s it.

      If these ever fail me, I would definitely try the SCD!

      Bev
      :)

  8. ColleenMay 28, 2013 at 5:58 pm #

    Just one thing I’d like to add here for people reading this who are considering SCD but feeling overwhelmed. It’s an awesome diet and will change your life, but it’s easy to praise it in the long run. It can be really hard on some days. Especially if you have no assistance other than your sick/weak/exhausted self to cook and do all the food preparation. I definitely felt deprived at moments in the first few months, and yes I sometimes had weak days and cheated a little, mostly with chocolate. This is not ideal and I’m it sure set my healing back, but it didn’t destroy everything positive that SCD gave me. I think Gotschall’s “fanatic adherence” line scares off a lot of people. You do need to stick to the diet totally and completely, but if you falter one day, it doesn’t mean you have to stop or quit or that you’ve ruined everything. You just get back on the horse. And if you are having a week with bad symptoms for some reason, go back to the chicken soup for a few days. It helps reset things. The yogurt adds a whole other level of healing, but some people can’t tolerate it at first. Come back to it and try again if it doesn’t work for you at first. Your first goal is to clear out/kill off the bad bacteria by cutting out grains, lactose, and sugar, and then secondly you need to repopulate your gut with good bacteria, and a probiotic and/or the 24-hour yogurt does this. Good luck to those starting out! It’s worth the journey. Stay the course for the long haul and you’ll see healing. For those veterans on this thread, it’s nice to read from a bunch of SCDers in one place. Congrats everyone, for taking control of your own healing. Your stories are inspiring! Best.

  9. shelly in maineMay 29, 2013 at 3:43 am #

    Hey KK…great follow up and now Med free. Awesome. Not sure if you’ve ever been on te SCD lifestyle site with Jordan R. And..they talk about the “four horseman”? You can just Google it if i include the site it slows it down. I am a lifer with uc as well and actually had to go to about 95-98% SCD as i was getting sicker, losing too much weight and extremely grumpy! I added oatmeal and occasional long grain rice and occ. potatoes! I use Rx strength vsl 3, ult flora-it has a delayed release, spitutein-which has glutamine(not scd legal!)and Chinese herbs, fish oil, vit d and am getting out of a flare (2nd one since being med free)with fingers and toes crossed!
    Hopefully quitting the Med will eliminate your bleeding. If not, maybe Bev’s regimen is your missing piece? Or some variation
    Continued health and healing, Shelly

  10. joannaMay 29, 2013 at 10:50 am #

    I hope you continue to improve.

    I’ve been on scd over 10 months now so just behind you. still struggling with a lot of bleeding but I can’t deny that I’ve gained weight since I started it- which I desperately needed. started at 84 lbs and have added 16 lbs so far. my bloodwork (except iron/hemoglobin) has improved in regards to vitamins/minerals.

    I figure i’ll keep eating this way just because I don’t mind it anymore. I don’t feel deprived- ever- but do wish I could eat more fruit/fiber! I miss a nice big salad sometimes.

    • Carol from Colorado
      CarolMay 29, 2013 at 5:08 pm #

      I was wondering what is the best time to start eating lettuce or is that a bad thing. SCD diet has salads but I am scared of that. Been in remission for 10 months also. What do you think?

      • joannaMay 29, 2013 at 8:04 pm #

        I don’t eat any lettuce at all. I think it’s kind of a pointless food- just makes more and bigger poops! I usually stick to sautéed spinach and less than 1/3 cup at a time.

        might as well try a little out and see what happens. raw is just like a colon cleanse for me.

      • ColleenMay 30, 2013 at 12:04 am #

        Carol, after about 9-10 months on SCD I found that I could tolerate iceberg lettuce. Not exactly the tastiest, but I like the crunch of it. Nice to have texture after mostly having soft foods for the year. Cobb salads work for me, as the majority of the other ingredients are cooked: chicken or shrimp, hard-boiled eggs, bacon, etc. Or something I’ve worked up to digesting: hard cheese, avocado, even some tomato. I use extra virgin olive oil with or without a splash of acid (vinegar or some citrus) for my dressing. Re-introducing salads, even in this mostly cooked form, made me very very happy. Go slow if you try it, in small doses. I think it’s easy to get in a safety zone rut with SCD, only eating the foods that you know you can tolerate well. Sometimes we have to push the boundaries a bit, when we’re craving it, but in a conservative and careful way of course! I think this helps with healing in the long run as well. Best.

        • Carol from Colorado
          CarolMay 30, 2013 at 5:48 am #

          I thank you for that and that makes sense! I forgot to ask do you eat the almond bread in the SCD recipes. There is a basic recipe for the bread but I don’t know really when to start that. If you should wait on that for 9-10 months maybe and if you do how regularly should you eat it? I am being very careful! I get lost in all this sometimes.

          • ColleenMay 30, 2013 at 8:12 pm #

            Carol, I think overeating the almond flour baked goods gets a lot of people in trouble. But in moderation you should be OK, especially if you’re asymptomatic. You said you’ve been in remission for 10 months? How long have you been on SCD? There’s a LOT of nuts in one cup of almond flour, so just proceed cautiously; a good alternative is coconut flour as you generally use less. Here’s a bread recipe I sometimes use: http://www.mariarickerthong.com/coconut-flour-bread/#
            but lots of other yummy recipes about online as well.

        • ShannonAugust 14, 2013 at 12:39 pm #

          I have been reading the stories here, Honestly I just came across this site today, I will be downloading the book and cookbook, I am feeling a bit unsure I have for sure been struggling with foods Why you ask ?? I don’t seem to have any triggers, I am willing to try anything, I was diagnosed about 2 and a half years ago and i have had 5 flare ups I am on meds right now to heal the flare but I am still bleeding alot, I am very worried that it won’t heal this time, I have no pain never do thank god but all the bloody mucosy stuff, bathroom several times a day. so I guess my fear is how will I know where to start with the foods??
          Any Advice ??

  11. UC Family Boy
    uc family boyJune 1, 2013 at 4:23 am #

    SCD has worked extremely well for me when I keep to it. I know the plan was written for it to heal, and so keeping to it is key. I keep to it 95% of the time as it helps, but am realistic to think FMT is most likely to help quicken the healing process. I keep to the SCDiet to manage my disease these days, I am 2 weeks away from doing the FMT (just waiting on the results on my donor) but will keep to the SCDiet due to its goodness.

  12. JEBFebruary 13, 2014 at 11:49 am #

    Have you ever been to a neuropathic or Functional Dr.? I too have suffered with colites/proctitis since I was 15. Started with bleeding with normal daily bowls. I also was told by the Dr. that diet was not really a factor and was stress or emotional related. I remember my parents taking me to psychologists. To practice Yoga! I was 15 what stresses does a 15 old have? I felt so guilty and responsible that I was causing my disease. My symptoms consist of bleeding, bloating, daily gas and constant constipation. At then end of last year I decided to finally try a neuropathic Dr. Which finally ran the necessary tests. They did chemical urine, stool, vitamin and allergy blood test. Well it came back I have severe Candida and allergic to Casein! Casein is a protein within milk which can be in everything even wine. The dots are all connecting…! I due there there was something with milk and carbs. Not one dr every tested for Candida or casein even though I consistently told them I knew there was something that I know tied to it. I asked to be tested for gluten and that came back normal but no one tested me for Candida. No wonder my tongue was consistently white. I have just started with the SCD diet and no dairy. I immediately feel better and barely have any gas or bloating. This is after five days and my tongue is not as white which was actually thrush. All these years suffering and finally an answer. Candida and casein is a main precursor of prostatitis/colitis IBS issues. The next test I want to take is a saliva cortisol test. Most of us sufferers are low in cortisol. We should not be below 50.

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