Success with SCD–Our Experience

Introduction:

I am a nurse, wife, and mother of three kids from Maryland, USA. My husband is 49 years old and has ulcerative colitis diagnosed this year (2012).

Specific Carbohydrate Diet (SCD) Success

My husband “H”. became sick on July 5, 2012. We thought it was an infectious diarrhea, and made several visits to off-hours clinics, where H. was prescribed antibiotics. Two weeks later he was still sick with bloody diarrhea, fever, chills, and some vomiting. At this point we got a call from the lab saying that H.’s white blood cell count was very high and might indicate sepsis. We were told to go to the emergency room immediately. H. was hospitalized for 5 days and treated with IV and oral antibiotics. When he was discharged, he was thrilled, but I still felt very uneasy because he just didn’t seem to be recovering, and we didn’t even know what was wrong because all his cultures were negative, and an abdominal CT showed nonspecific “inflammation.”

A week after discharge, we went to the GI specialist that H. had seen years ago for (I thought) hemorrhoids. At this point, H. was so weak he could not stand at the counter in the doctor’s office to register. His face looked deathly, and he had gone from 175 pounds to 152 pounds in just one month. We went into the doctor’s office, sat down, and told our story. The doctor’s first comment was, “I think this is ulcerative colitis.” It turns out that he had treated H. years before for proctitis. I looked blank, trying to remember what proctitis was, and the doctor explained that this is a mild form of UC. The very next day, H. had a colonoscopy that confirmed the diagnosis of UC involving the entire colon with extensive inflammation. Of course you’re always hoping for a limited version, but this was not the case. I felt relief to know what we were dealing with, even though the chronic nature of the disease was scary. Looking back, we realized that H. had had symptoms for years, but we just interpreted the bleeding as ‘hemorrhoids,’ and the frequent trips to the bathroom seemed like a minor variation on the normal. H. started taking prednisone that evening. He did feel better as the days went by, but continued to have frequent bowel movements, about 6 or 7 per day.

The next week H. started Asacol and Entocort. He stayed on Asacol for about three weeks, and this drug was a disaster for him. Bowel movements eventually increased to 12+ per day. (I stopped counting after 12 because it was too depressing.) Searching online, I discovered that some people have more, not less, diarrhea on Asacol. At this point in time our doctor was on vacation, so we made the decision to stop Asacol, and reassessed our options. We had made a half-hearted attempt at the specific carbohydrate diet a few weeks before, but now, in desperation, we decided to try it 100%. H.’s BMs at this point were about 8 per day off Asacol. During the first week of SCD, H.’s symptoms were the same and he actually lost weight, down to 149 pounds. His clothes were hanging off of him. I got my yogurt-maker in the mail and made the first batch. H.’s bowel movements increased in the first 1 to 2 days of eating the yogurt. Well, I told myself, that’s just the bad bacteria dying off. But I wasn’t really sure.

By day 9 of the diet, we decided that we would continue through the weekend, then stop if there was no improvement. It was just too hard, and we didn’t even know if it would help. The next evening we were sitting on the couch and H. placed his hand on his stomach. “Something is different,” he said. If you are a family member of someone with UC, you know that ‘different’ is often ‘bad,’ and I was almost afraid to ask. But this was a good change–not so much feeling something, but NOT feeling the badness, the sickness, the crampiness. The next day, H. came home from work, stood in the doorway, and began to cry. “Today was a good day,” he said. “I had so much energy.” He was down to 3 to 4 bowels movements a day. Over the next few weeks, the bleeding stopped, his bowel movements became formed, and eventually he was having ONE bowel movement per day.

And that’s where we are today. H. now weighs 169 pounds. (I told him he can stop now.) He has 1 to 3 formed BMs per day, depending on what and how much he eats. We are still weaning the prednisone, and occasionally after a decrease he will have some bleeding or loose stool, but this quickly resolves as his body adjusts to less steroid. I can only attribute my husband’s improvement to SCD. At the time that he improved, we were already weaning down the prednisone, and had not started any new medications. Since then, H. has started 6 MP–he wanted to do this to prevent recurrence and possibly have an option to loosen up the diet in the future. He has stuck to the diet without exception since the day we started. We are so grateful to be where we are right now, and couldn’t have imagined such relief from his symptoms a few months ago. I would have loved to read an encouraging story when we were coping with this illness at its height, so I wanted to share this with others in the hope that it could bring some optimism to someone who needs it. I would be happy to answer any questions about what we do, what we eat, how we made the changes, or the timeline of improvement. Best wishes to all.

written by Cynthia

submitted in the family and friends venting area




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17 Responses to Success with SCD–Our Experience

  1. joanna November 20, 2012 at 9:17 am #

    so how long did your husband follow the intro diet for? what does he typically eat now?

    • Cynthia November 22, 2012 at 8:04 am #

      Hi Joanna,
      For the first 1 week to 10 days, he mostly ate chicken soup with very cooked carrot and celery, baked chicken, beef, lamb, bananas, scrambled eggs with cheese, apple cider, and cooked, peeled zucchini. The next thing that we introduced was other vegetables such as onions and broccoli (no problems), then cauliflower and kale (harder to digest, we found.) When we introduced a new food, we made sure it was in a small amount. For example, I’d make mixed vegetable that was mostly zucchini with just a little broccoli. We waited a few weeks before trying salad, and when that went fine, we were very happy because there are so many types of salads that feel like a complete meal (especially if you add nuts, grated cheese, and salmon, chicken, etc.)

      Currently he eats scrambled eggs or smoothie (coconut milk, banana, yogurt, frozen mango) for breakfast. Lunch at work is usually meat and roasted vegetables or lentil stew with vegetables and or meat. Snacks are banana, 24-hour yogurt, nuts, and cheese cubes. If I’m cooking dinner I try to do something really creative to allow him to feel that he’s not missing anything. For example, last week I made a California white chili with chicken, navy beans, roasted green chiles and poblanos, spices, etc., topped with grated cheddar. I added sour cream to mine and he added yogurt, and it was great! Another favorite is salmon cooked in a foil packet with herbs, shallots, lemon juice, peppers or other vegetables. I would say that roasted vegetables are one thing that we never get tired of. Broccoli roasted with olive oil, lemon juice, and seasoning, topped with pine nuts and Romano cheese is wonderful.

      Some of our frequently used ingredients are almond meal (used in desserts like apple crisp, topping for au gratin dishes, coating for pan-fried chicken or fish); unfiltered apple cider vinegar (salad dressings, added to soups or sauces, deglaze pans after sauteing to make a sauce); and, of course, honey because he does miss sweets.

      Eating out can be challenging because we love ethnic restaurants and that’s difficult. For upscale dining, we usually choose a farm-to-table type place where he can have fish or steak with vegetables on the side. Many places let you order double vegetables to replace the potato. Tapas places are another good choice because there are usually several of the plates that fit the diet. For casual places, we look at diners that serve omelets, naked burrito at Qdoba, and he has even ordered cheese steak without the bread!

      We are starting to try to reduce the fat content of his diet since his weight is now back up. He is looking at shifting away from so much meat and cheese, and relying more on fruits, vegetables, and legal beans now that his symptoms are under control.

      Hope this helps. Sorry it was long but I enjoy talking about food!

      • joanna November 24, 2012 at 4:22 pm #

        thanks for the detailed reply, cynthia. i’ve been following a mix of SCD/paleo for 3 months and although my symptoms have decreased, i still have diarrhea, urgency, and bleeding. i am considering taking bovine colostrum since my supplements now aren’t doing the job. i’d hate to have to add humira but it looks like i might have to.

  2. KK-SCDer November 20, 2012 at 10:24 am #

    HI Cynthia,

    I am from Maryland as well. I have been on SCD for 6 months now, but have not seen as much improvement as your husband has. Of course, I’ve had UC for about 10 years (and it also started out as proctitis, was prescribed asacol, felt worse). I’m curious what your husband eats every day? I have been struggling to find something to eat that is palatable for more than two days in a row. Any help is very much appreciated!!

    • Cynthia November 22, 2012 at 8:18 am #

      Hi,
      See my reply above to Joanna. My husband does struggle with craving both variety, and items like bread, pasta, and rice that he always loved. The funny thing is that even though I don’t have IBD, I do feel better when eating the SCD food, and I see food differently now. I really wonder if anyone should be eating large amounts of processed grains and sugars.

      Looking at recipes online has helped us add variety–both SCD sites and regular sites, as many recipes can easily be altered for SCD. Flavor intense ingredients like capers, roasted garlic, roasted peppers, fresh herbs, lemon, blue cheese, etc. help make salads and other dishes tasty. Soups and stews are a good option too.

      Best of luck to you.

  3. bev November 20, 2012 at 3:59 pm #

    Hi Cynthia…

    I’d like to chime in taht asacol did the same thing to me…it made my symptoms worse instead of better, but my doctor said it was the UC. I stayed on that useless drug for almost 15 years…it’s no wonder I felt so terrible all of that time.

    I’m off all meds now thanks to probiotics. Keep that diet up! Drugs are not the way to go with this ‘condition’.

    Cheers:)

    • Lynn November 24, 2012 at 4:07 pm #

      Our son is 18 years old with uc. Currently tapering off prednisone but what does he do then after the prednisone. His GI doc wants to put him on meds. What probiotic do you use?

      • bev November 24, 2012 at 4:11 pm #

        I use the probiotic ULTIMATE FLORA CRITICAL CARE by RENEWLIFE.

        It’s fabulous…

        If you can’t get that one, get one that has 50+ billion strains.

        Cheers and all the best:)

        • Lynn November 24, 2012 at 4:35 pm #

          Thanks Bev he is taking a good probiotic and additional supplements as suggested from various nps. He was doing well tapering off his first round of prednisone and doing the probiotics but then he had his appendix out! He regressed and went back into a flare. The GI put him on 20 mg for two weeks and he is now tapering and doing the probiotics and supplements. He has an appt. with the GI doctor on Tuesday who wants to put him on meds. This GI doctor does fecal transplants on C.Diff patients but will not try one on our son as he says they do not work on uc patients. All you experienced ucers out there what should we do?

          • bev November 24, 2012 at 5:58 pm #

            That’s too bad about the appendix. He was doing well before that, too, huh? Any little thing seems like it can cause a flare…boy that sure bugs me!

            Doctors always want us to try another med…I know how that is. Before you commit to that try the probiotics again…and give them time. I really hate to say that I don’t believe meds are ever the way to go. They may work for a bit…but then they always seem to fail again…

          • Maria March 23, 2013 at 8:52 pm #

            Hi Lynn, about the fecal translplant, I just wanted to share this info that I found a few days ago about UC patients who have done it, and have great success in going into remission after doing it. Might be worth looking at. :)

            http://www.healingwell.com/community/default.aspx?f=38&m=1612467

  4. Maggie November 21, 2012 at 8:01 am #

    Such an amazing story and more proof that the scd diet works. Keep up the good work!

  5. UC Family Boy
    Uc family boy November 21, 2012 at 12:01 pm #

    Hey Cynthia,

    This feeling of your husbands stomach feeling different is something I can relate to. First time around of taking prednisone and not on any diet restrain, I felt at different times like my stomach was dropping – this really bad feeling of something just wasn’t right inside. After flaring again and being put on prednisone again, I started the SCDiet and well this time no stomach dropping feeling, I feel ok.
    With regards to the sepsis, I was shocked when I read your husband may have sepsis. Not because I have it but because of some recent study I have done about IBD and sepsis was also spoken about. There is basically a link in inflammatory diseases that all suffers have than link us all together with similar attributes caused by something that is missing. I would suggest maybe trying some oral butyrate which is good for IBD and sepsis, I am glad the diet is working.

  6. Efim November 30, 2012 at 1:54 pm #

    Hello Cynthia! It is so nice to get some inspiration from a person whose actually had success with the SCD. I have been sick with this horrible disease for almost 12 years now and i started the SCD diet 5 months ago. I guess everyone reacts differently to this diet because I am still at the same number of bowel movements, and I don’t feel a big improvement. The one thing that has improved though is no gas. Any suggestions you have?

    • Cynthia December 9, 2012 at 9:01 am #

      Hello Efim,
      Are you having 1 to 2 servings of the 24-hour yogurt per day? We found that that was key to reducing my husband’s symptoms. Also, you may want to look into whether Vitamin D supplements would be recommended for you, if you’re not taking them. Vitamin D gets depleted in those with GI disorders, and it’s necessary for intestinal health, according to what I’ve read.

      Another food/supplement that I’ve heard even some mainstream doctors praising is coconut oil. It’s now available in most specialty grocery stores like Wegman’s or Trader Joe’s. It’s delicious and can be used in salad dressings, sweets, etc. My husband mixes coconut oil, honey, and a nut butter together when he wants ‘dessert’ (in a small amount because obviously it’s really fatty!)

      Best of luck to you. I hope you see improvement soon.
      Cynthia

  7. Lynn December 29, 2012 at 6:47 am #

    I know you haven’t heard from me in awhile but I am still reading all your posts and silently thankful for all of you. Our son, the 18 year old college student is on day 4 of the SCD diet. He’s doing well as far as eating the right foods but has watery “D”. It’s controllable but that’s what comes out when he goes. He’s on 15 mgs of prednisone and is trying to taper. My husband and I are doing the diet with him.Wehave 3 doctor appointments in the month of January. One a new GI recommended to us by the doctor and naturopathic doctor we have an appointment with and then an alternative doctor who also recommended this new GI doctor. We are trying to get him ready for his second semester of school starting January 22nd. It’s a miracle he got through the semester with having his appendix out and now dealing with pilonidal and the uc issues. He seems to have so much inflammation all over in his body. Any tips on day 4 of SCD and beyond with “D” would be appreciated.

  8. Najah February 5, 2013 at 4:14 pm #

    Hi Cynthia
    I feel so relieved after reading your story.
    I’m also helping my husband with SCD. He was diagnosed in Aug2012.
    He just started the SCD and he had only 2 days if the intro as he is having formed bowel. He was on predisone for 8 weeks and still on Asacol. He had yogurt everyday before he started the intro of SCD and I don’t know when he starts having the 24 hr homemade yogurt
    again. When did your husband start the yogurt ?
    Thank you
    Nadjah

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