Ulcerative Colitis Tips


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16 Years with UC, Athletic Married Female with Two Kids

Nikki in AugustIntroduction:

I am a 35 year-old female. I live in Chico, CA. I have two sons ages seven and twelve. I am happily married. I have never had a problem in the relationship department. I was diagnosed with UC in 1997 just before my 20th birthday (16 years ago).

Some more about me:

I am a full-time student working towards a Bachelor’s degree in Liberal Studies and a teaching credential. I work out. Right now I am doing the Insanity videos. I have already done Insanity twice. I also did P90X twice. I still do P90X abs because it’s AWESOME! My sons and I started karate lessons a few months ago. We will be testing for our yellow belts soon.
I like arts and crafts but haven’t had much time to indulge in that for the last few years.

Colitis Symptoms:

For the past few weeks I have been experiencing a mild flare. Major stomach pain in the morning. Pooping feels like birthing a child. My insides do what they want, wrenching and contracting like I’m in labor! I try to breathe through it and relax my muscles. When I finally stand up there is a pathetically small amount of poop, along with several small floating science project-looking globs of bubbly mucus/blood in the toilet. Gross! This happens with each of my three to five morning trips to the potty.

Five or six times throughout the day I pass some pinkish-beige mucus(?) Poop(?) I don’t know what it is. I just know it has to come out or I will have urgency later. Fortunately I don’t have a lot of problems with urgency during the day, just sometimes in the morning. I can usually keep my morning urgency under control too, as long as I try to pass Something. I get a little crampy, and I always feel “off,” but I’m thankful I’m not in horrible pain and I don’t have urgency.

My Colitis Story

I was diagnosed with UC in 1997 at the age of 20. I had been ignoring my symptoms for over six months (wet farts-yuck, small amounts of mucus, stomach pain, fatigue). Even though I was in a lot of pain I thought I was just sick. I thought that it would go away. Then one day I was driving and I couldn’t hold it. I had to stop at a gas station, ASK FOR A KEY, and run to the bathroom (a separate building a hundred yards away). In the bathroom my bowels unleashed a horrendous amount of blood all inside my pants and in the toilet (literally think “The Shining”). I spent a half hour cleaning up, returned the key and went home to cry in the bathtub. That was it. I had to go to the emergency room.

They told me I had hemorrhoids. When I insisted that it was more than just hemorrhoids they referred me to a specialist who had a two month waiting list. I waited. I took a day off work here and there if I felt horrible; I zombied my way through classes. Finally I got to the doctor who took one look at my colon and said “You should have come here sooner! Your colon looks like hamburger!” I told her that her office had a two-month waiting list. She said “You should have told us it was an emergency.” (Make sure you tell your doctor how you really feel). Then she told me I have a chronic disease. I said “What, you mean I’m going to have this for THE REST OF MY LIFE!!!???” and I burst into tears.

For about a year, maybe two, it was on and off the Prednisone, six Asacol a day, enemas, suppositories, nothing really worked well. The Prednisone worked well at first, but then a flare would come as soon as I stopped. I thought “This is it, my life is ruined. I’m a poopy mess. Nobody will ever love me. I’m doomed to live in diapers, or worse (?), wear a poop bag. The Prednisone will eat my bones, make me fat and give me pimply moon face.” The enemas and suppositories? Come on! How do you explain that to your bed mate? “Uh excuse me honey, I have to shove something up my butt real quick.” Before I got sick I had been planning to go work on cruise ships and travel the world. Now I was trapped in my own body and buried in costly (and worthless) meds. Those were the early days (months).

In 1998 (a year after my diagnosis) I found a miracle called Shark Liver Oil. I was in the middle of a bad flare and nothing was working. I took it for a month or two and my symptoms disappeared! I kept taking the stuff, sticking to that brand plus Asacol and the symptoms stayed gone.

In 1999 I met another guy and got pregnant. I kept taking the Shark Liver Oil (and Asacol) but two months before I was due I SWITCHED BRANDS of the Shark Liver Oil. Big mistake. My symptoms had been gone for a year and a half and as soon as I switched brands they came back. I had my healthy baby boy in 2000 (nine days late!) and breastfed him. I switched back to my old brand of Shark Liver Oil. Every time I breastfed I had the urge to use the toilet! Reluctantly, I stopped breastfeeding after three months and slowly my symptoms went away (I kept taking the Shark Liver Oil and Asacol).

In 2003 I stopped taking the Shark Liver Oil and all meds. My symptoms stayed gone for over a year. In 2004 I got pregnant and in 2005, just before my first son turned five, I had my second healthy baby boy (nine days late, again!). Two months before I had him, though, my symptoms had returned. I breastfed for three months and once I stopped, my symptoms slowly went away (no meds!)

For about four or five years I stayed off the meds and was mostly symptom-free until 2010. That June, I started to see symptoms of a flare. I had to do a lot of hoop-jumping because I had lost touch with my doctor (don’t lose touch with your doctor, even when you are feeling good!) I had to go to the emergency room a couple of times, and also the local family health clinic where I saw a random family practitioner. I begged them to take a stool sample.

A week later I was shocked to discover that my stool came back positive for Campylobacter, a CDC-flagged pathogen that is transmitted to food by unwashed hands! I couldn’t recall where I might have acquired the bacteria, but then again it had been two months since my symptoms first began. To me, it seems strange that doctors don’t routinely monitor our stool for bacteria, which is believed to be a suspect in what causes our disease. After all, Helicobacter Pylori is believed to be what causes stomach ulcers!

Anyhoo, in September (three full months after my symptoms had begun) I was hospitalized for six days. I had lost about twenty pounds from my already small frame. They gave me a colonoscopy, a shot of Methotrexate, Flagyl, some other antibiotic, Prednisone and Asacol (I’m allergic to Sulfa). When they released me they gave me a prescription for Colazal, the rest of my Prednisone and antibiotics and a few more Methotrexate tablets. Slowly but surely I got better, but never great. I started to become steroid-dependent.

In January of 2012 my doctor put me on 6MP. I went straight into remission. I had normal log poops for the first couple of months! Then my stool got softer but I still felt great! Then I started to get a little irregular. Then I started pooping more frequently. Now I’m having a mild flare. Bummer.

While my current flare is still “mild,” I’m going to slowly make the transition to the SCD lifestyle. My hope is to achieve remission without changing or adding meds. I ordered a Yogourmet yogurt maker and the starter powder. I hope I got the right stuff. I’m going to wean off of milk, bread and sugar. The SCD is dramatically different from the diet I’m used to, so I’m taking baby steps.

I read that VSL#3 is helping some people achieve and maintain remission. VSL#3 is a powerful probiotic containing around 900 billion cells. If I could afford it I would try it. I think the SCD yoghurt is my best option at this point. I plan on buying the Feeling Crappy to Feeling Happy/cook book combo next paycheck. I’m actually kind of excited to try this diet! I think it will make me healthier than I’ve ever been in my life. I want to thank you, Adam for being such a positive inspiration and for providing a forum and a ton of information for all of us with UC!

Fortunately, science is making great strides towards better treatments for our disease. I truly believe that we are close to understanding what the heck makes our colons so special. (Haha) A few up-and-coming drugs are Tofacitinib, Vedolizumab (why the crazy names?) and MDX1100, among others. While these are designed to treat the symptoms and not the cause of UC, they sure have the potential to make life more comfortable while we wait for a cure.

My family is very supportive, especially my husband. I have been “coming out of the closet” more often lately with friends and acquaintances. I guess now that I’m older I care less about what other people think of me.

Colitis Medications:

Colazal (2.5 years). 6MP (one year). 6Mp works pretty well; this flare-up is mild. Have taken lots of Asacol, not so great. Prednisone doesn’t even work anymore for me. I take probiotics every day, like 40 billion cells. I often take multivitamins.

written by Nikki

submitted in the colitis venting area




22 Responses to 16 Years with UC, Athletic Married Female with Two Kids

  1. alex February 11, 2013 at 8:34 am #

    Thanks so much for your story. I really relate to your fears at early diagnosis. Unfortunately I still have those fears.
    Im just curious, why not start the shark liver oil again? Ive never heard of it before, what brand worked for you?
    Hope u get better real soon…….like now!

    • Nikki in Chico
      nikki February 13, 2013 at 11:36 am #

      Hi Alex!
      I tried going back on my brand of Shark Liver Oil (Master Formulas, which can be found on Vitasalus.net) in 2010 when I had my most recent bad flare, but it didn’t work that time. The reason for it not working could have been that I was also fighting Campylobacter, but I don’t know. I am considering trying it again but I am seeing improvement with the semi-SCD thing I’m doing right now. At $40 a bottle it’s quite an investment, but worth it if it works. I am planning on refining my SCD regimen first, and then going back on the Shark Liver Oil. Thanks for your reply!

  2. KimberlyHI
    Kimberly February 11, 2013 at 11:48 am #

    Hi Nikki,

    I was on asacol for years, I am allergic to sulfa too. But I was getting really bad flares so I started imuran and remicade to control my UC. I am in remission at the moment but I was in a bad flare for most of 2012! Imuran is a 6mp drug.
    Just wanted to say I started the SCD about 2 weeks ago and it is not the easiest but at the same time I feel great on it. I am normally eating breads and pastas, lots of sugary foods (I have a bad sweet tooth) and I love dairy. So I was inspired by this site and reading the breaking the cycle SCD book to try the diet which I was and still am very excited about. It’s a little weird because it’s like a major turn from my normal diet, but I am finding I feel pretty good energy wise and feel less heavy.
    The yogurt is really great, making your own yogurt is kind of neat and it is good stuff. I thought it would be a pain but it is not. I am now making my own yogurt and using it to make ice cream that is SCD approved.
    I had a breakdown one day and ate a chocolate bar! And one day I went to lunch with my daughter (13 months) and husband, and it was like oh forget it I am just going to eat. So I did, but I am back on track now. I am about 70-80% on the diet, I am taking it slow like you plan to. I did not want to throw out all my food so I am slowly weaning off old foods and not buying it any more, for example I am using my store bought salad dressing. I am honestly not missing breads pastas or rice at all. I only seem to miss snack stuff like grabbing some tostitos or a candy bar! But I keep thinking, that stuff is so bad for me anyway.
    But like sunday is always “pizza day” at my house, we always ordered pizza. Now, my husband and daughter eat it and I make my own SCD pizza using almond flour, I really like it and I feel better about eating it than I would eating the dominos pizza. So it has really overall been a good experience. :) I wish you the best of luck and am hoping you feel better soon!

    • Gail February 11, 2013 at 1:23 pm #

      Great post Kimberly and glad to see you are getting some good results. It takes time and change won’t happen overnight but to start healing and feeling better is worth the small effort of a diet and lifestyle change. Making your own food is the way to go because then you know what you are eating. Dairy seems to be a real problem for a lot of people, and gluten and sugar too. I hope you are following Bev’s advice of a good probiotic as well because it’s important to get the gut flora back in balance. It seems that issues in the gut, where the immune system stems from, creates all kinds of other problems throughout the body. Vitamin D is also crucial, especially in northern climates with less sunshine.
      Good for you for taking charge of your own health.

      Nikki, good for you too for doing the same – there’s nothing to lose and so much to gain. I’m glad to see you are taking a good probiotic. Please keep sending updates. Good luck to you. There’s lots of information and recipes online. I hope you start feeling better soon.

      • Nikki in Chico
        nikki February 13, 2013 at 11:50 am #

        Thanks Gail,
        It’s so refreshing to connect with people here.

    • Angela February 11, 2013 at 2:03 pm #

      Hi Kimberly,

      I’m also always eating pasta and breads (can’t seem to give it up completely) and I’ve started only using this pasta by Dream Fields, it was made for diabetics so it has a low gylcemic index and is “low carb” but it tastes and cooks like regular pasta (I don’t seem to care for whole wheat pastas, its not the same). Now if I do go and have regular pasta I can’t believe how bad I feel afterwards. Love this stuff. It’s pretty much available in a lot of regular grocery stores in the pasta section.

      http://www.dreamfieldsfoods.com/

      Another trick with a UC friendly diet, which you’re already starting to do, is make your own versions of things (like chips, etc.). Then you get your munchies in moderation but they’re better for you because a big problem with a lot of foods is they are heavily processed and contain a lot of preservatives which can trigger flares) which homemade don’t have.

      Angela

      • KimberlyHI
        Kimberly February 11, 2013 at 11:50 pm #

        Thanks Gail Angela and Bev! Well you know I do take multivitamins and probiotics, I get a ton of sun living in Hawaii so hopefully I don’t need Vit D ;)
        It has been really great trying this diet and having this site as support. Angela, I have already tried a ton of the SCD recipes already so I could kind of curb my munchie craving. I have not made any chip type things though, that would be great, I’ll have to look for a recipe. The ice cream is a blessing I must say. For a foodie addict like myself anyway.
        I am looking at that pasta site Angela, that is pretty neat. I may just have to try that!

    • Nikki in Chico
      nikki February 13, 2013 at 11:38 am #

      Thanks Kimberly! Could you please post the pizza recipe or a link to it? I’m dying for some pizza!

      • KimberlyHI
        Kimberly February 13, 2013 at 2:35 pm #

        Nikki thank you for the chip and muffin recipes, I can’t wait to try them! So I used the pizza crust recipe right out of the Breaking the Vicious Cycle book:

        1/2 Cup Almond Flour
        1 Egg
        1 tsp EVOO
        1/4 tsp Salt
        Add spices such as basil, oregano, to taste

        You’ll mix these ingredients together and add more almond flour to create a ball and workable dough. Grease a pizza pan or baking sheet, place the ball on the sheet and use hands to press the dough into the shape of a small pizza crust. The crust may not take up the whole pizza pan and I think making it a little thin will be better. Put the pan in the oven and preheat it to 350. This allows the crust to cook a little while the oven preheats. Once preheated, remove the crust from oven and add toppings. You can drizzle more EVOO on the toppings if you’d like.
        You can use whatever SCD legal veggies and cheeses you like. Then here is a SCD legal tomato sauce you can use as well, from the Eat Well Feel Well recipe book:

        1/4 cup EVOO
        1 Small Onion
        6 Cloves Garlic, chopped
        1 Carrot, peeled and chopped
        2 28 oz cans italian whole tomatos
        1 bay leaf
        2 tbsp unsalted butter
        1 cup fresh basil
        salt, pepper to taste

        Heat oil in saucepan over medium high heat. Add onion and cook until translucent (5 minutes or so). Add garlic and cook for another minute. Add carrot, salt, and pepper, cook for 10 more minutes, stirring occasionally to prevent burning. Add tomatoes and bay leaf, lower heat, and simmer for 1 hour, uncovered. Remove bay leaf and add butter.
        When sauce has cooled a little, place in food processor/blender in batches and puree with basil. Ready to use with pizza.

        I have seen other crust and sauce recipes but this one seems the easiest and I’m all about less work :) The crust is super easy the sauce just takes a little time. In my opinion it is worth it for that special sunday treat. I use shredded block cheddar plus parm, romano, and asiago cheese, and I have used artichokes and spinach as toppings!

        • Nikki February 14, 2013 at 10:59 am #

          Thanks for the recipe Kimberly. Looks like I’m gonna have to buy those books. I checked them out at Barnes&Noble and thought the recipes might be hard to follow. I really want to get officially started on the diet, though. Looks like the best way to do out is to buy the book.

          • KimberlyHI
            kimberly February 15, 2013 at 12:34 am #

            The books have been good for me for a couple recipes, not so much meals. The pizza, breads and cookies, yogurt, ice cream, things like that. I use them more than I thought because it isn’t as bad as I had thought. When I first saw the yogurt making process I was like oh what? No way! But its easier than I thought. :)

        • Nikki in Chico
          nikki February 15, 2013 at 6:21 am #

          Well Kimberly, here is one more recipe that will knock your socks off. (If you’re craving sandwich bread, that is). For this recipe I used organic peanut butter instead of the ridiculously expensive cashew butter and had fabulous results. I also multiplied all the ingredients by 1.5 and baked the bread for 60 minutes.

          http://www.againstallgrain.com/2012/05/21/grain-free-white-bread-paleo-and-scd/

  3. bev February 11, 2013 at 3:10 pm #

    What a fabulous post Kimberly!

    It does appear that no one drug works for very long. This condition is not best treated with meds. It’s too bad, but it is reality. I swear by probiotics. I refuse to do the meds any more, after 15 years on them, and not a hell of a lot of relief from them. In fact, medications always made me feel 10 times worse. I guess I’m ultra sensitive, just like alot of others with UC.

    I agree with you. I believe that new and more natural ways of managing UC are just around the corner!

    Cheers, and thanks for the good read! Excellent!!

    Bev
    :)

    • Nikki in Chico
      nikki February 13, 2013 at 11:39 am #

      Hi Bev,
      I’m looking forward to getting off the meds someday!

      • bev February 13, 2013 at 12:08 pm #

        I hope that you will Nikki…it’s the best feeling ever!!

        The meds made me feel so out of sorts. It’s great to feel ‘mormal’ again.

        :)

  4. Keisha February 11, 2013 at 5:58 pm #

    Hi! I can really relate to your story! I’m 32, married with 2 young girls and your symptoms sound so similar to mine! I’m just getting out of a rough flare that lasted about 2 weeks. I was nodding my head, “Yes!” as I read your story. I’m on the maximum dosage of Lialda. Last year before I got pregnant with my infant daughter, I had a flare and the doctor added the suppositories to the Lialda. It was embarassing to me, but my husband helped me with them and told me I didnt have to be embarassed about it. Its good to have a husband & family members who are supportive of me. Going to work is hard and each day is a challenge. Some days I wear pads or adult diapers if I’m having a bad time. I just want to thank you for sharing your story because it really helps me to know I’m not alone in this. I’m thinking of trying the diet too, I just dont know where to begin. (btw I have to wait till my next paycheck comes to get the book combo, too :) )I’m a little nervous because I’m small already, 118 lbs (I lost all my baby weight due to the flare, even with my first baby, too) and I dont want to lose anymore weight. My clothes are falling off of me. I have on the same pants I wore in college, and I was small then, over 10 year ago! I can pull them all the way up over my stomach like Urkel! lol Anyway, I just hope changing the way I eat can help. Thank you so much for sharing, and making me feel better. Good luck to you! :)

    • Nikki in Chico
      nikki February 13, 2013 at 11:46 am #

      Ha Ha Keisha!
      Urkel is the best!! I think if you do the SCD right, you may not have a problem keeping the weight on. Your belly may feel less bloated though! I’ve been eating eggs and avocados like they’re going extinct and I strain my whole milk SCD yogurt so it gets all nice and fatty and creamy. Yum! I also made these DELICIOUS cinnamon bun muffins using almond flour. Oh my GOSH! http://comfybelly.com/2011/07/cinnamon-bun-muffins/#.UQc5Lmdy-S4
      Sorry I don’t know how to hyperlink it but you should check it out! Take care. :)

      • KimberlyHI
        Kimberly February 13, 2013 at 2:43 pm #

        Keisha, I agree with Nikki, I think you may be able to try the diet and still gain weight, there are a lot of SCD foods that are high in calories, like the honey, avocados, and cheeses. You can make the yogurt with high fat and calorie milks and creams or half and half, and if you feel ok to eat it lots of the recipes use nut flours which are also high in calories, plus most the recipes use butter. That is such a struggle to be super thin and not be able to eat and stuff! My last flare I was so frail when I started getting better, my leg and arm muscles were completely gone and I literally looked like a stick. This i definately a good diet for someone who wants to lose weight, but I’m thinking you could also be on it and gain weight, you’d just have to try to eat more of the SCD legal foods.

  5. Barb February 18, 2013 at 9:20 am #

    Hi Nikki, I too just found out that I am know steroid dependent and no longer on the Ascal. So what meds are you taking now if any?

  6. zinnat ara January 16, 2014 at 6:14 am #

    u r so courageous …..i’m 34…blessed with one daughter….when i was thinking abt my next baby then i came to know that i’ve uc…oct’13..i. come to know that pregnancy brings flare up..is it true ?love to se ur smiling face….

    • Nikki in Chico
      nikki January 16, 2014 at 6:04 pm #

      Hi!
      I personally had flare-ups near the end of both of my pregnancies, and also during the months that I breast-fed. But the good news is that I’ve read many stories about women who say that pregnancy head the opposite effect on them! They say that while they are pregnant they go into remission!

      I cannot say enough good things about the SCD! I am still well because of it, and it has been about five months since I stopped taking 6mp.

      Good luck to you and thanks for your reply! It’s always nice to hear from others on this site!

      Nikki

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