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UPDATE – 16 Years with UC, Still Active and Happy

Nikki in AugustMeet Nikki

I am a 35 year-old female. I am married to a handsome, loving guy and have two sons, ages 12 and seven. I live in Chico, CA.

Some more about me:

I work out (I am currently into the “Insanity” videos). I also take Karate lessons with my two sons four days a week. I’m a full-time student, working on a BA in Liberal Studies+Teaching Credential. Mostly I like to hang out with my family. Weekdays are full and busy, so weekends are for relaxing and shopping. I have a pretty good sense of humor. I like to joke around and be goofy.

Colitis Symptoms:

I have been having a mild flare. Middle of the night potty visit, major cramping, blood.

UPDATE – 16 Years with UC, Still Active and Happy

I have had UC since January of 1997. Diagnosed at age 20.  I really just wanted to update my story because I wrote that I was just starting a casual version of the SCD that so many UC’ers are raving about.

I had ordered the yogurt maker and was anxious to try it out. Well, I made the easy-peezy yogurt and it turned out tasty! I think my body is still adjusting to it but I am still seeing improvement in my symptoms–mostly in the form of actual logs (or more like large sticks). This is something I hadn’t done in quite a few months!

I don’t miss grains or sugars at all because thankfully I’ve come across some absolutely WONDERFUL and easy recipes for bread, muffins, even chips! I have been handing out samples to my friends and family and they all love the stuff. Even my kids love it! I kind of feel blessed that I am on this diet because it is a healthier way to eat. I still can’t quite give up that splash of milk in my tea or that dab of ranch mixed in with my vinegar for dressing, but I am finding new recipes to replace these things; it’s just a matter of taking the time to prepare them.

Like I mentioned before, I have had this disease since 1997–16 years. I have read all kinds of stuff in that amount of time. I have always been proactive in seeking my own truth about this disease. I have also learned how to really listen to my body. I know that junk food is bad for me and that most things that come in a box or a can are junk, but convenience can be so tempting! Cutting out the grains and sugars has been surprisingly easy (and delicious!)

I haven’t started the “Actual” SCD. I plan on giving it a try by this summer.

You know what? Having a poopie problem is humbling, yes, but it’s not the end of the world. Science is coming closer to finding a tolerable medicine for this crap, and the SCD works for thousands of people. I am grateful to Adam and this website for connecting all of us.

Colitis Medications

I’m on 6mp. So far, so good, although I have been having a mild flare for the past few months. Also taking Colazal. I have taken Shark Liver Oil in the past. It put me into remission. It was from a brand called Master Formulas. One time I switched brands and my symptoms came back.

written by Nikki

submitted in the colitis venting area

12 thoughts on “UPDATE – 16 Years with UC, Still Active and Happy”

  1. KimberlyHI

    Hi Nikki! Nice to hear your update, and with good news that you are feeling better! Do you ever venture south to the San Diego area? My husband and I have a home in Oceanside. I used to know someone who lived in Chico, and we had thought of living in northern cali, it looks so pretty.
    I am still loving making the yogurt, I am making a batch once a week. I use part of it to make ice cream and the rest in smoothies or with fruit added. Yesterday I finally made a homemade spaghetti sauce, wow. So much fresher tasting than jarred. I find that I am having trouble eating too many nuts and fruits and veggies, so I am reevaluating everything to figure out what to do. Like the increase in those foods has given me tummy trouble, not necessarily a flare but just some pain and gas. I went back to my regular diet 3 days ago and it is better today. So many diets to try and whatnot, I believe I’ll need to create my own. Have you had any of this? I wondered if I should try SCD again or try something else but for now I’m giving myself a diet break and eating what I normally would. But I feel great and am able to do things and feel energized so no complaints here, whether on SCD or my regular diet my energy level is the same. Anyway, great to see you are doing well!

    1. Nikki in Chico

      Hey Kimberly,
      My husband is from Escondido. We do want to take a trip to SoCal in the near future to at least show the kids where he grew up.

      I do find that so many foods can irritate me, but so far my symptoms are improving every day on my version of the SCD. I now have no pain, no blood, solid bms and the urgency is almost gone. I know that too many nuts are bad for me, but I do ok with raw almonds (no more than a serving a day, not including my homemade almond milk–wow!) I made some “ice cream” with it last night (ziplock bag method). My kids love to make ice cream that way.

      I have been avoiding sugar and grains like the plague. I have eaten at a few restaurants but ordered safe stuff like eggs, avocado, fruit and coffee. I use honey and half&half in my coffee. I drink a few cups a day. I am certain that grains and refined sugar are bad for me.

      My big plan is to start a strict SCD, not to improve my symptoms but to start doing “intros”, see what my body can tolerate. I like to exercise and want to see if my body can handle sweet potatoes and plantains.

      I want to try your spaghetti sauce recipe. Please post if you have time. I’m glad to hear your symptoms are improving, even while eating what you like. Happy healing!

  2. Nikki – can you tell me more about 6MP. Or if anyone else is reading this who is on 6MP? My doctor wants to put me on that and I am concerned about side symptoms. Any problems with it? Did it make a difference for you right away?

    1. Nikki in Chico

      Hi Zayna,

      6MP wildly improved my symptoms, and quickly. I was not responding to Prednisone anymore, so I was ready to try something different. I’ll admit, I was scared. I had read about increased risk of infection and even death! What put me at ease was knowing that I was going on a very low dose–the lowest possible dose for my weight, and that I was going to be monitored to see how my body reacted to the drug.

      I have been on 6MP for 13 months and have had no adverse reaction. I have read about people, including kids who have been on the drug for several years with still no problems. 6MP has lost its luster for me; after being on it for about ten months I had a flare. Rather than up my dose of 6MP I decided to see if the SCD could kick me out of the relatively mild flare I was having.

      So far I have been seeing major improvement with diet alone, but it has taken several weeks for the urgency, pain, blood and frequency to finally go away. I recommend 6MP if your flare is severe like mine was 13 months ago (15-20 bloody bms/day, up all night, pain, urgency, etc). I recommend the SCD if your flare is mild, like 1/3 of the “severe” description. I’m not a doctor, but I even think 6MP might be safer than Prednisone.

      I hope this helps. get well soon.

      1. Hi Nikki,
        thanks so much for the info on 6MP. I forgot to check the box that alerts me about responses – so I just saw your response to my question. Loved reading your post – look forward to getting more updates.

        1. Nikki in Chico

          Hey Zayna,
          I am still on the diet and getting better every day. In fact I feel cured! I’m thinking about telling my doctor that I want to stop the meds. I ran into a lady at the store while i was buying almond flour. She was buying some too. Soon we discovered that both of us were on the SCD. She says she’s convinced it works.I guess she was in pretty bad shape before she started the diet too. Thanks for your reply!

          1. Hi Nikki,

            I am so happy for you that SCD is working! Are you trying the recipes with your kids? Do they like the almond flour? I got a yoghurt maker from Lucy’s Kitchen for SCD yoghurt and it is really good – I think great for kids too with honey and fruit.

            Keep me posted and how things are going. I need inspiration right now :-) Let me know what your doctor says about going off the 6MP. When I started on SCD 3.5 years ago I went off my medicines myself after 6 months and stayed healthy for 3 years before I got sloppy on the diet. Right now I am on strict SCD, back on prednisone and 4 Lialda/day. And about to start the L-glutamine and probiotics that Bev posts about. Can’t wait to see if that works for me :-) For some reason it is taking a long time to get better – the first time I went on SCD it only took about two months.

            My doctor wants me to get hepatitis vaccinations before I go on 6MP or Remicade because I travel. Have you heard of that?

            Keep me posted!

  3. Nikki,

    All I can say is stick with the diet!! Whichever one works for you! I found gluten-free alone has been enough to set me into remission and off all of my medications, but if I were to have quit after a few months I would never have known. It took at least 3-4 months for my intestines to heal and be healthy. I was diagnosed about 13 years ago. I have been on asacol, colazol, prednisone, imuran, enemas, lomotil, had blood transfusion, YOU NAME IT! Some would work for a while, but the effect would eventually ware off. After 12 years I finally threw in the towel, when I was paying hundreds of dollars for these medications and none were working anymore. Finally I said I’m done with the meds, I feel just as bad on them then not! My symptoms were bloody, mucousy stool several times a day (and night), cramping, fatigue, all the fun stuff, I had a “flare” constant for like 5 years! I enjoy life now and actually enjoy coming up with new gluten free recipes! When I first started I ate rice everyday, but now I make tacos, mac and cheese, bread, the extra cost at the grocery store is so worth it and actually I’m probably saving money in the long run. I am thankful that this site is here, because when you are going through something as personal as UC it is so comforting knowing there are others out there that can relate and give good advice. Have an awesome day!!!

    Meds: NONE! Gluten-free diet, Vitamin B12, Vit E, zinc, Evening primrose oil, exercise

    Years w/ UC: 13

    Years in remission: 1 (Yay!)

    1. Nikki in Chico

      Nice, sher! I am thinking about introducing a few foods sooner or later. Looking back, i sort of know what caused problems for me:corn especially. Right now i am enjoying my renewed health. It’s encouraging to read that even after a year,the diet is still working for you,as it is for so many others. Crazy how it took us so many years and meds to figure out that diet is the key to getting better. I agree that every body is different and so different foods may or may not cause problems. Cheers!

  4. Hi Ladies,
    I was searching this website for inspiration and I stumbled upon your converstaion. I just started the SCD this week. I was wondering what your experience was when you first started? When did you start to notice any improvements? ALSO do you think you really need to “ease” into the diet? I’m not terribly symptomatic right now (because I’m on asacol and prednisone) so I I’ve just been avoiding all the “illegial” food and the ones they say to wait 6 months to start like nut flour, almond milk etc. Like you Nikki, I’m really active, so it seems really hard to sip on chicken soup for a few days lol! I can’t tell you how motivating and helpful reading people’s stories have been…I look forward to any suggestions, tips or advice. Also, I just ordered a yogurt maker- any recommendation on a good starter?
    Thanks in advance!

    1. Nikki in Chico

      Hey Laurie,
      So you’re starting the SCD? That’s awesome. I am eternally grateful to Elaine Gottschall for coming up with the diet, writing a book On it, and continuing to answer questions about it. I’m also grateful for this site, because without it I would not have been motivated to try the diet!

      My experience: I began the diet by buying the yogurt maker. The starter I use is by Yogourmet from Lyo-San inc. and is the L.bulgaricus,S.thermophilus,L.acidophilus one. It costs less than $5 at my local health food store and makes three 2-quart batches. I use whole cow’s milk and strain my yogurt for about 4-5 hours before eating it. I eat about 1/2 to 1 cup every single morning.

      I never did the phases of the diet; like you I just eliminated what I was supposed to eliminate. It took only a week or so for me to notice any improvement, and I had to avoid most nuts to really feel better. But after a few weeks I was convinced that this diet was healing me. Nut flours were ok for me an. soon I was able to really add variety to my diet.

      I have been on the SCD since late-January, and I am never going back to the way I was eating before. After about a month on the diet I could eat all the nuts and seeds I wanted, and after two months on the diet I stopped worrying about the trace amounts of starch in spices, which made eating at restaurants easier.

      I eat salads a lot right now. I eat lots of fruit. I drink orange juice from concentrate occasionally as long as the label says “no added sugar”. I make popsicles out of it. I get a lot of my food at Costco because they have canned food that’s SCD legal. Honey is cheap there. So is almond flour, which I haven’t been using lately.

      I am symptom-free and have been for months; a far cry from where I was in mid-January.

      I hope this helps, and I know the diet will heal you! I eat better than all of my friends. All that processed food is bad for you anyway, so it’s a win-win! Oh and I eat bananas for energy. Sometimes I go with half of a banana and a tablespploon of all natural peanut butter as a pre- or post-workout snack. I really haven’t noticed a loss in energy. Good luck!

  5. Nikki in Chico

    By the way, Zayna, there was no “reply” button under your comment. I never realized you had posted a reply to me. In response to your questions (from months ago, lol!) Your doc probably wants to make sure your liver status healthy while you’re on 6mp; I’m guessing the same is true for Remicade.

    I recently tried stopping the Colazal and after a week off of it I started to feel bloated and constipated, which,to me, was a sign that my colon was becoming inflamed. So i chickened out and got back on the Colazal. I am still determined to get off all the meds, so next I’m going to order that fermented L-Glutamine that beautiful Bev is always talking about. I think outs the key to keeping the inflammation under control. After a month on that I’m going to try stopping the mess again, starting with the Colazal.

    My kids and husband love my homemade nacho chips and Cheeze-It crackers. They also love my banana bread and cinnamon bun muffins, oh, and my pizza! I make pretty normal dinners and I eat fruit while they eat rice or noodles. If they’re having tacos,I’m having taco salad. We have taco night at least once a week. A lot of times my kids ask to have fruit instead of starch. Fine with me!

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