Stopping 6mp Thanks to SCD

a recent picture of me!

a recent picture of me!

Introduction:

I am a 36 year-old, happily married mom of two boys (8 and 13). I am currently attending California State University, Chico with the goal of becoming an elementary school teacher. I was diagnosed with Ulcerative Colitis in 1997 at the age of 19 (almost 20).

Some more about me:

I like the feeling of being fit, so I work out all the time. I enjoy arts and crafts, do-it-yourself projects, sewing and being outside. I have a pretty good sense of humor, love to laugh, love a good joke.

Symptoms:

Currently I have no UC symptoms.

Stopping 6mp Thanks to SCD

This is an update to my story which was submitted around January of 2013 (all of my stories are written here: http://www.ihaveuc.com/author/nikki-in-chico/). At the time I was having a “mild” flare, which by my definition was around five to ten painful bathroom trips per day (plus a couple at night) with some urgency. There was mucus and blood with cramping and fatigue, often feeling like I was in labor during “go time.” And “go time” was never very productive. I don’t know what ever became of the food I was eating, but mostly what came out of me was mucus and blood. Looking back, I’m thinking wondering how I considered that “mild.” Well, I have definitely had it worse, but this flare was big enough to force me to consider going back on stupid Prednisone.

For a year I had been taking 6mp (1 tablet/50 mg per day), plus I had been on Colazal (Balsalazide Disodium, 3 capsules, 3 times per day) for over two years. I didn’t want to add in Prednisone because I had taken it several times before, and it only works while I’m on it. The last few times I have taken it, my symptoms only partially went away.

I have always been embarrassed about having UC.

Only my family and closest friends knew I had it, and I didn’t talk about it much, even when I was sick and in pain. Then I stumbled upon this website, and I read about how the Specific Carbohydrate Diet (SCD) has helped thousands and thousands of people. I had always suspected bacteria as a factor in this disease. I bought the yogurt maker and decided to give it a try. The diet was a bit difficult at first, and I didn’t do it all the way. I just eliminated all of the bad foods and stayed away from nuts and raw fruits and veggies at first, while my insides were healing. I was really missing bread, crackers, chips, cereal, milk, ice cream and chocolate! I checked out a few good websites with healthy and yummy SCD recipes. After a few weeks I was feeling much better, and I was getting used to my new way of eating.

After a few months, my UC symptoms were gone! Soon I was feeling so good that I asked my doctor to take me off of the 6mp. For the past 12 weeks, I have been tapering down off of the drug, and in three days I will be completely off of it! I will post another update in a couple of months, but I believe that the SCD has helped me get my UC under control. I now follow the diet loosely. I don’t pay close attention to spices, for instance, and I drizzle a little ranch on my salads (which I eat almost daily). I have half & half in my coffee (another daily habit), I drink some juices from concentrate (popsicles, yum!). I use a little balsamic or rice vinegar here and there, but that’s about it on the “cheating.”

So yeah, the diet takes a little getting used to, but it’s so worth it! Some people are a little jealous that I “have” to eat so healthy. My skin looks better, and I feel fantastic! I’m SO glad that I am almost done taking the 6mp. I have read that the drug can have side effects that appear months or even years AFTER STOPPING it. That’s a little freaky. I did notice some skin changes on my face when I started lowering my dose– a dime-sized rashy patch on my chin and a couple of water-filled bumps in the crease of my smile that would not go away. Those skin issues lasted for about six weeks, but now I’m better.

If my symptoms do come back, first I will get strict on the SCD. If that doesn’t help, I will try Bev’s regimen of the probiotic and fermented L-Glutamine. If that doesn’t help I will try the Olive Oil. If that doesn’t help, I will go back on shark liver oil from Master Formulas which has put me into remission and kept me there before. If that doesn’t help, I will try some other suggestions which can be found on this site. A shout-out to Adam (and his beautiful wife): This website is amazing. Thanks to this community of UCers, I’m not afraid to talk about my UC. In fact, I have even found others who have similar issues; I’ve told them about the SCD, and they are seeing improvements as well. Thank you, and thanks to Elaine Gottschall, the creator of the diet!

Medications:

6mp worked great for me for almost a year, but while tapering off of it I have noticed strange skin issues pop up on my face. In short, be aware that 6mp can cause side effects even after you stop taking it!

I have done enemas and suppositories, which never worked for me.

I have taken Prednisone so many times in my life that it no longer works for me.

I still take Colazal, which supposedly has no side effects (not sure if I believe that).

written by Nikki

submitted in the colitis venting area









26 Responses to Stopping 6mp Thanks to SCD

  1. Adam August 20, 2013 at 9:36 am #

    Congrats Nikki!!!!

    So So happy for you!

    I totally remember receiving your initial story (and your second one) and it’s so awesome to hear you are doing well and on your own road to recovery and getting back into the swing of things! Super super cool.

    Way to go, and I think you’re for sure living proof that there’s more than one way to skin the cat, especially with getting started with SCD !!

    great job, and we (Michaela just read your story too:) are way proud of you,

    -Adam

    • Nikki in Chico
      nikki August 20, 2013 at 10:20 am #

      Thanks Adam,for creating this site. It truly has changed my life. I apologize for any typos that I miss, I often post comments with my Android phone,which has a sneaky keyboard that likes to play tricks on me! I try to be careful, but, whatever.

      So anyway, yeah,this site has helped me”come out of the closet,” and in doing so I have learned that I’m not alone, even in my community and my circle of friends.

      I think it’s rad that you read so much about UC, and then share what you learn with all of us.

      • Adam August 20, 2013 at 5:02 pm #

        Thanks so much Nikki:)

        but you know (I hope) that this site is nothing without people like you.

        And for sure you don’t need to apologize ever on this site for typos…come on, typos are cool!!
        (unless your typing/texting while behind the wheel)

        best of luck to you up in Sierra nevada land!

  2. shelly in maine August 20, 2013 at 1:19 pm #

    :-) Awesome Nikki…so happy to hear of your update and continuing to become a teacher.
    Best and continued health, Shelly

    • Nikki in Chico
      nikki August 20, 2013 at 1:22 pm #

      Thanks Shelly! :-)

  3. Caroline
    Caroline August 20, 2013 at 4:09 pm #

    Congrats, Nikki! I am so happy for you – I love seeing all the great stories here. Seeing that people really can and do heal from this means so much to me, especially when I was in my awful flare. Keep it up! :)

  4. bev August 20, 2013 at 5:06 pm #

    Good luck Nikki…I hope what I take works for you, too. I wish it would work for EVERYONE of us…

    I am never going back to any type of drug…even if the UC all comes back…I really think I may just opt for colon removal…my body just seems to hate all pharmaceuticals, if you know what I mean.

    Great post, by the way!

    :)

  5. UC Family Boy
    UC family boy August 21, 2013 at 2:48 am #

    Inspiring story.
    Thank you
    Taz

  6. Caroline August 21, 2013 at 11:50 am #

    Congrats Nikki. Thanks so much for taking the time to write your story – it is inspiring!! SCD is an amazing diet/lifestyle. Takes big commitment, but sure seems to pay off in the end.
    I have been creeping out the site for a year and a half now and it certainly has saved me as well. Thirty years of UC, on and off most of the drugs, finally went to have a consult with the surgeon April 2012 but SCD has postponed that … hopefully indefinitely. Bev’s probiotic works wonders and Ultimate Flora has come out with a new one with 80 billion cultures called “colon care”. Might have been out in the US for a while, but just hit Nature’s Fare in Langley, B.C. Works great.
    Thanks also to Adam for all of the time and effort he puts in to this site. You are changing lives!
    Fantastic story, Nikki!

    • Nikki in Chico
      nikki August 21, 2013 at 6:03 pm #

      Caroline,
      It is fantastic to hear that SCD is helping you too! Thanks for letting me know about the new probiotic. I will have to check that out.

  7. Richele
    Richele September 11, 2013 at 7:26 pm #

    Hi Nikki!
    I really loved reading your story. I feel so inspired and recharged by what you wrote. I, too am taking 6mp and also Remicade. Double boo. The more and more I read about SCD, Paleo, Probiotics the more “ill” I feel being on these hard core meds. In the past I tried diet/lifestyle changes as well as accupuncture and a number of other things, and nothing ever seemed to help. I wonder if I gave up too soon? I was pretty sick at the time and…well, who knows.
    Maybe now that I am feeling “pretty ok” is the time to start fresh and get off meds for good. In fact, today, I started to get into the swing of things and made a conscious effort to eliminate crackers, bagels, donuts, whatever…my usual suspects. Baby steps.
    Did you take baby steps towards SCD or did you dive right in?? Any advice would be mucho appreciated.
    Best of everything to you,
    Richele

    • Nikki in Chico
      nikki September 12, 2013 at 3:40 am #

      Hi Richele,
      As far as elimination of foods goes, I would say I dove right in. At first I even stopped drinking coffee and just drank plain Lipton tea in the morning. I did not do that for long-just a couple of weeks. The first thing I reintroduced was half-n-half. I started putting that in my tea (which is actually pretty tasty!)

      But I clearly remember the day I had my first cup of coffee again. Oh man, that was heaven!

      I had a tough time on Valentine’s Day with no candy, but then I found a recipe for Almond Roca made with honey, butter and slivered almonds. Whoo, boy! I ate most of that batch within one week!

      I have made lots of almond milk ice cream with homemade almond milk, rock salt and plastic baggies (no ice cream maker needed!) I have made delicious pizza crust with almond flour and fresh Parmesan cheese. I have made deliciously crispy “nacho cheese tortilla chips” with almond flour and sharp cheddar. I have also made “mug cake”: a personal sized cake that you male in the microwave. Literally takes 5 minutes (requires legal coconut or almond milk) and is delicious!

      I spent a few months experimenting with recipes. Now that I’ve been on the diet I don’t miss those “bad” foods as much. I mean hardly at all. I do cheat with spices, salad dressing and half-n-half. I chew sugarless gum sometimes. I feel so much better that eating sugars and starches seems silly to me now. I don’t want to be sick. Ain’t nobody got time for that!

      I hope this helps. I hope that soon we find an easier way to conquer this disease, but the diet is a miracle for me.

      Warm wishes and happy thoughts,
      Nikki

  8. Richele
    Richele September 12, 2013 at 5:58 am #

    Thank you for your insight! I think I’m gonna keep eliminating this and that and see where it goes :)
    Take care!

  9. Nathan September 19, 2013 at 4:12 am #

    Hi Nikki,
    Great story! So happy for you! Are you still going strong? I hope so.

    My doc wants to put me on 6MP too starting next week since im in a months long flare and Asacol isnt working. Currently on Prednison since 2 weeks and tapering off. Also started SCD since 2 weeks.
    I’m quite scared of the 6MP, but maybe its the best choice together with SCD and when i get into remission i can always taper off like you did.
    Or i should maybe give SCD a longer time before choosing 6MP.
    I dont know what to do!!! :(
    I cant decide. Could you give me any advice? I know its hard to give.
    But just be honest.

    I was in hospital on IV Prednison 50mg/day for a week. First big flare. Now am out and have leftsided medium/severe UC. BM around 5/6x with occasional bleeding but nice and formed since Pred/SCD (dont know which did it)
    (and actually since some days a lot of small morning D’s, clear though. weird)

  10. Nikki in Chico
    Nikki September 19, 2013 at 1:14 pm #

    Hey Nathan!

    My opinion about the drugs for Ulcerative Colitis is this: they are only a temporary fix. Prednisone was a blessing for me! At first. 6mp, aside from being scary as hell, was also a blessing for me. At first. Prednisone started losing its luster for me after several cycles of it. I eventually got to the point where I was dependent on it, meaning, I would have a flare, go through a cycle of Prednisone, feel better while I was taking it, and have another flare as soon as the cycle ended.

    I started the SCD because 6mp stopped working for me after 9 months. It did take me out of a flare, but only for a while. So I was left with two choices: keep experimenting with drugs, or try the diet. I opted for the diet. I felt much better after just a few weeks. I was still on the 6mp, though. But my recovery from that flare was one of continuous improvement. I am still well. I have been completely off of 6mp for about a month.

    The best advice I can give you is , since you are on the Prednisone and your stools are formed, and if you can handle putting off the 6mp for a few weeks, do it. Give the diet an honest try. If you have a few weeks left in your Prednisone cycle, and you are seeing improvement, why not? After you have cycled off of the Prednisone, if your symptoms come back, you know the diet isn’t working for you. But by all means, if you are sick, and if UC is disrupting your life beyond that which you can handle, get on the 6mp.

    It took about a month for me to stop having urgency in the morning. It really does take a long time for the intestines to heal. Starting 6mp is a big decision. It is a commitment that involves monitoring of your liver and blood. I’m not saying that the drug is evil, but it is much more risky than the diet, hands down. And once you start taking it, you will be on it for a while. It took some effort and time on my part to get my doctor to approve of me stopping the stuff.

    I wish the best for you, and I hope that you continue to feel better and better every day!

    =Nikki+

    • Nathan October 6, 2013 at 12:39 pm #

      Hi Nikki,
      Thanks for your reply!
      I have been thinking about it very hard and long now and decided to not go on 6MP as of yet.
      Im not that scared anymore of the drug. Some people are superpositive and some people really negative about the drug, so its just a gamble anyways if it will help you.
      I am on SCD for 1 whole month now and want to see what happens when i go off Prednisone.
      I am doing really well. Currently on 25mg and a month more of tapering to do. We’ll see!

      • Nikki in Chico
        nikki October 6, 2013 at 3:36 pm #

        Hi Nathan,
        It’s nice to hear that you are feeling well. I think Prednisone and SCD is a great way to get into remission. I wouldn’t be surprised one bit if the SCD kept you there. In still going strong, even as busy as I am these days. I can’t say enough good things about the diet!
        Wishing you well,
        Nikki

  11. Ann October 3, 2013 at 11:43 am #

    Hi Nikki, I just read your post. I too have started the SCD 9/4/13. I am tapering my Prednisone from a really bad flare form 40mg now down to 20 mg. I am on 800 mg tabs of asacol per day as well. I was trying to not have meds at all but after this last flare, I am willing to take them if I need to. I’m not ready to have my colon taken out… I was glad to see you do cheat on the diet. I have been afraid to cheat and am not sure if I should until I am off the prednisone. If I do flare, I want to know the cause and if I do too many differernt things at once it is hard to tell. 6mp is the same as Asacol, right? I should know this but I’m not sure. Glad for you comment about half and half in your coffee…I’m going to try heavy cream with honey in my coffee this weekend since heavy cream has the least amount of lactose in it. Good luck to you! Ann

  12. Nikki in Chico
    nikki October 3, 2013 at 12:47 pm #

    Hi Ann,
    I wholeheartedly agree that at this stage, taking drugs is a better alternative to total colon removal! The drug I was taking (6mp) is a TNF blocker or something like that. Much more intense than Asacol. I am taking Colazal still, which is similar to Asacol. I plan on stopping that drug as well, but maybe during summer break next year. Right now I don’t want to risk it, especially since I do have half n half in my coffee, etc. :-) My thinking was the same as yours when I decided to introduce the half n half: more fat, less lactose. I did use heavy cream before I went to half n half. Good luck with that this weekend! And either way, ENJOY that coffee! Lactose is a disaccharide, so my logic behind trying it was that it isn’t as bad as a starch! Glad the Prednisone helped you with your flare. The stuff just doesn’t work for me anymore.

    Take care, and thanks for commenting. It’s such a great feeling to discuss this stuff with people who understand!
    =Nikki=

  13. Ann October 5, 2013 at 6:23 am #

    Good Morning Nikki, I just had my first coffee in months with heavy whipping cream and honey…it was awesome! Each day I am feeling better is a celebration…enjoy your weekend! Ann

    • Nikki in Chico
      nikki October 5, 2013 at 7:57 am #

      Ann,
      I know that feeling! Best day ever!
      Cheers!

      Nikki

  14. Ann March 4, 2014 at 12:08 pm #

    Hi Nikki, I have not posted in a long time but just ran across your profile. I have been on the SCD since September 2013, taking 800 mg 3 tabs in the morning, a multivitamin and 1 1/2 T of evoo in the morning. That’s it. I have not had any blood for 3 months now…my bm’s are solid too! Whether it is the SCD or the asacol, I am not yet sure. I plan on staying on the SCD and just reduced the asacol to 800 mg 2 tabs in the morning. I am still enjoying my coffee every morning but put honey and almond milk in it. I have also discovered coconut flour. I just made pizza with coconut flour crust and it was pretty good. I am finally starting to work out with pilates and am almost 100% in my overall health. I hope to hear good news from you. Take care, Ann

    • Nikki in Chico
      Nikki March 4, 2014 at 5:54 pm #

      Hi Ann!

      It’s wonderful to hear that the SCD is working for yet another person! Sounds like you are doing a combination of things to keep your health in check. I tried using homemade almond milk in my coffee, but did not like it at all. I drink at least three cups of coffee every single day, and I use half & half and honey. Pilates is a challenging workout! I strongly feel that yoga and Pilates are the fountains of youth! I don’t get enough of either. I am extremely busy with school and work, so I work out as often as possible, usually at least five days a week, but only for about 30 minutes at a time. I really only have time for that much. When school’s out I kick it up a notch.

      As far as my health is concerned, I am still doing great, despite my busy schedule! I cannot give the SCD enough praise! The only problem I ever encounter is occasional constipation, but that is easily relieved by drinking some medicinal tea with senna in it. I am still on the Colazal, but mostly for security purposes. I keep meaning to talk to my doctor about weaning off of it. I like how you’re doing that with the Asacol.

      The SCD absolutely changed my life, gave me hope, and restored my health. Thanks for writing!

      Warm wishes,
      Nikki

  15. Ann March 5, 2014 at 7:23 am #

    Hi Nikki,
    I, too, am having problems with constipation…never thought that would happen! I will try the medicinal tea with senna. What medicinal teas do you drink? I have many in my pantry. Tension Tamer/Celestial Seasonings, Ginger, Mint and Chamomille but I have read this one may cause constipation. Where do you buy senna? I hope more people start to get serious about the SCD. I had to get really sick before I decided I needed to take action. Thank you for responding. Take Care, Ann

  16. Nikki in Chico
    Nikki March 5, 2014 at 7:46 am #

    Hey Ann,
    How interesting that Chamomile may cause constipation! I have been drinking Sleepytime from Celestial Seasonings for the past few weeks (which contains chamomile, and now that I think of it, I’ve noticed I have more constipation over the past few weeks since I started drinking it! I have a bunch of teas in my cupboard, and my favorite brand is Traditional Medicinals. They have a tea called Smooth Move, and it works very nicely. One cup in the evening is all you need. I get it at a store in Chico, CA called Raley’s (forgot where you are from?). Lots of health food stores around here carry this brand.

    EVOO is on my list as a backup, should the SCD stop working. Have you gained weight from taking it?

    Nikki

  17. Ann March 5, 2014 at 8:09 am #

    I will try the Smooth Move. As far as the evoo goes, I have not gained weight. I lost 15 pounds when I was really sick in August 2013 and plateaued when I gained 10 of it back. My weight is less since I’ve been on the SCD. I eat 1/2 banana and 2 eggs every morning, SCD soup or fish for lunch and a salad with meat prepared according to the SCD for dinner. I have nosugar peanut butter (Smuckers) with honey and nuts for a snack in the afternoon. I have somewhat of a sweet tooth so I make hot chocolate with almond milk, cocoa and honey sometimes before bed. I am from Michigan. We have a very nice Whole Foods Market where I will try getting the tea and senna. One more foodie favorite, I mix 1 Cup coconut oil, 1 1/2 Cup unsweetened coconut flakes, 6 T honey, 1 t vanilla extract, 2-4 drops of peppermint essential oil (doTerra) roll into little balls then rolled in hemp seeds and store them in the freeezer. Another quick fix for my sweet tooth!

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No matter what, colitis flares don't last forever, don't forget it:)