Ulcerative Colitis Tips


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Ulcerative Colitis Survival

Liz Kooymans from Colitis Survival

Liz with her daughter

Meet Liz Kooymans:

I was recently diagnosed with ulcerative colitis in July 2012. I’ve been on the Specific Carbohydrate Diet and symptom free for about 4 months now. To keep my perspective, I write articles to help others with colitis at www.colitissurvival.com, a resource for those with ulcerative colitis and other IBDs.

More About Liz:

I love to cycle and run. Exercise makes me feel good. Exercising with ulcerative colitis is always a challenge because I feel tired often.

Colitis Symptoms:

I currently have occasional gas, bleeding, and pain when I eat something I’m not supposed to. Otherwise, I’m symptom free on the Specific Carbohydrate Diet!

Liz’s Colitis Story:

My UC started in February 2011 while I was pregnant…pregnancy really messes up a body. I basically ignored it thinking it was part of pregnancy for the next year. The diagnosis finally came in July 2012 when I reluctantly had a colonoscopy. That colonoscopy prep is NO FUN!

I was given Canasa and sent on my way after the colonoscopy determined that I had a mild case of ulcerative colitis, only affecting the lower portion of the colon. Determined not to take medication the rest of my life and unable to take medication as a pilot without notifying the FAA of my colitis…I was desperate to find a diet to control my colitis. That’s when I found the Specific Carbohydrate Diet. Of all the diets out there, this one stood out because the science made sense and matched up with the elimination of anything from my diet that could possibly cause an immune response or inflammation.

So, I jump started the healing process with a couple of days of Canasa and started the Specific Carbohydrate Diet. Other than one flare up from eating something I shouldn’t, I’ve been pretty much symptom free since I got serious about the diet in late July. As a female, I have a little recurrence of my symptoms each month when my hormones go crazy, but I know when to expect that and one Canasa nips it in the bud.

Overall, I’m thankful that diet is keeping me in remission for the most part and I’m not taking medications constantly. From everything I’ve read, it seems like some of the medications like Canasa lose their effectiveness over time if taken constantly, which is scary. That’s yet another reason I’m big on the diet.

To keep myself from getting depressed and going insane from this frustrating disease, I write articles to help others with colitis on colitissurvival.com.  If I can help even one person, it’s worth the effort. I definitely recommend converting your frustration from colitis into fuel to help others…keeps everything in perspective.

My questions for everyone:

  • Do other women have problems with recurrence of colitis symptoms during that special time of the month?
  • What about getting pregnant with Ulcerative Colitis? Now that I developed UC during my first pregnancy I’m afraid it’ll become worse or debilitating if I get pregnant again! Any advice?
  • Does anyone else get really embarrassed when you eat something slightly wrong and get the world’s worst gas in front of anyone other than your spouse?

Medications:

Canasa occasionally during colitis flare ups does it for me. Also, Garden of Life Women’s Raw Probiotic (of course they have men’s too), Vitamin D, Garden of Life Omega-Zyme enzymes, and cod liver oil supplements also help as well.
I also think all UCers should consider fecal infusions…nasty but potentially very effective.

written by Liz Kooymans

submitted in the colitis venting area




pregnant, SCD

15 Responses to Ulcerative Colitis Survival

  1. Adam
    Adam December 22, 2012 at 2:21 pm #

    Hey Liz,

    Congrats again to you for figuring out your UC!

    I’m hoping that some others can give you some pregnant/pregnancy feedback. From the stories I’ve read over the years, it really seems case by case, lots of people have gone through a full pregnancy with minimal/no issues/flare ups, and others have mentioned some difficulties. Whether its really pregnancy related or just the usual come and go symptoms seems hard to really get a grasp on. (BUT, I did receive an email a few days ago from a previous poster here who is well into her pregnancy and doing just fine! So its for sure possible:)

    Cheers again, and thanks for starting your own website spreading the word about UC!

    Happy holidays to you and your fam,
    -Adam

    • Carol from Colorado
      Carol December 23, 2012 at 6:02 pm #

      I have been doing well and am in remission for 6 months but am still on Imuran which has helped. I am taking a low dosage. On the SCD and dong well with it. Into photography and hike with Ginger and Petey around Canon City and beyond. I hope you have a Merry Christmas.

  2. bev December 22, 2012 at 5:19 pm #

    This is so excellent, Liz! You are doing what it takes when you have this disease. I took control myself, about 11 months ago, and took a wonderful probiotic and L-glutamine…and went off the meds for good.

    I am living in remission and it is fabulous!

    Thanks for the great post. UCers need to know and have alternatives to these awful medications. You never know what will work for you, as UC seems to be a very specific condition. It does not hurt to try any natural way that can get you there!!

    Cheers:)

  3. Sanne
    Sanne van Kralingen December 27, 2012 at 3:32 pm #

    Dear Liz,

    Thanks for sharing your story. I was diagnosed with UC in mid 2008 and I got pregnant at the end of that year. At that moment I was symptom free and was on mesalazine. I had a perfect pregnancy, but I had to keep taking my meds. I haven’t had any symptoms and was able to breastfeed my daughter for 8 months.

    From what I’ve heard and read, it really is different for everyone whether they will have flare ups during pregnancy or not, but it is best to get pregnant at a time when your symptoms are minimal.

    I’m having a really bad time with my UC right now, so unfortunately, my daughter doesn’t have a sibling yet. I’m very interested in the diet! For me, garlic, yoghurt, fennel and white rice are foods that make me feel better.

  4. Busy UC Mom
    BusyUCMom December 29, 2012 at 11:21 pm #

    Liz, I am so glad to hear that the SCD worked for you. I have just started on it because I refuse to let this disease win. I was diagnosed after pregnancy. I began having symptoms about 6 months pregnant but of course the doctor thought it was just hemorroids reemerging after pregnancy number 1, eventhough I only gained 25 pounds total in with each baby and eventhough I had c-sections. After baby came, the doctors said the cramping and horrible gas was due to hormones and to wait until after I stopped breastfeeding and the hormones could subside. One year later, and dealing with major UC, we finally all realized it wasn’t the baby, stress or hormones. Of course, now my doctor says the pregnancy likely did trigger the UC. Who knows really. What I do know is that I want to control it without medication. So since you have been on the diet so long, can you give me a few good ideas for breakast, lunch and dinner? I am having a hard time coming up with ideas and as a busy working mother with two boys, I don’t have a lot of time to prepare the food in the back of the book.
    thanks for your help and have a happy and symptom free 2013.

    • Laura January 2, 2013 at 9:00 pm #

      I also first was diagnosed at 30 after my first pregnancy and was told not to get pregnant again unless I was in full remission or it would be worse and I suffered almost 2 yrs and it was only lower colon, finally a hydrocortisone enema helped and then I got pregnant months later with my second child. It was the worse pregnancy ever and lost 30 pounds first trimester until I found a great gastro and he put me on prednisone through out remaining pregnancy (i then gained 55 pounds) The stress made me go into early labor, my water broke at 32 weeks! i had her 2 months early! Luckily she was fine and I just weaned off steroids and was fine too! Never had a flare up until 4 yrs later when I became pregnant again and was put immediately on prednisone and went full term and was fine after her for a year. Then I quit smoking and got a bad flare up for a month. Now it’s been ten yrs and no flare up till oct and its non stop and my entire colon this time since I quit smoking again”
      It seems like for me it’s hormonal or when I quit smoking, I am 47 and wonder if its hormonal again, maybe going through my changes soon? Idk
      I have tried all med’s and then 6mp which gave me to many side effects as I sit in hospital now, and trying to decide my next move. My Dr really wants me to try remicade and I want to do diet and probiotics and that’s what I’m gonna try first . So…. Sorry I carried on, but I can use some diet advice too, I have 3 kids with active schedules . Any advice is welcome!!! Please
      Wishing you all well success and glad we can be supportive for each other on this site! Great people!

      • Liz Kooymans
        Liz March 22, 2013 at 8:03 am #

        Laura,
        I hope you’re feeling better by now! Did you try SCD? If so, I hope it’s working well for you. To get good results you’ve really gotta follow it closely!
        You can do it!
        Liz

    • Liz Kooymans
      Liz March 22, 2013 at 7:59 am #

      BusyUCMom,
      The best thing to do as a busy mom following the SCD is to cook 2 or 3 days for seven. On the weekend, I’ll cook a double batch of banana nut muffins and 2 crock pots of chicken soup. Then one other day that week I’ll cook another meal like a full crock pot of spaghetti sauce and two spaghetti squash. Then freeze what you don’t use the first 2 days of each meal. That right there should cover about 6 days of lunches and dinners. Then we usually go out one night to restaurant I trust. I also eat quick snack foods for lunches some days like the ones on the colitis survival snack ideas page at http://www.colitissurvival.com/scd-snack-ideas/.
      If you’re really really busy, you can buy stuff like SCD muffins and bread online at places like http://www.scdbakery.com/.
      Good luck and hope SCD is working well for you!!!! I know it’s hard when you’re busy!

  5. Brittany in Atlanta
    Britt January 5, 2013 at 7:00 pm #

    We have similar stories! I was diagnosed with severe UC when I was pregnant too! I also have a harder time with my UC once a month, my stomach just kind of gets out of whack for about 2 days, then slowly back to normal. I am nervous about getting pregnant with our second child bc I don’t know how it will affect my pregnancy and how the baby will do with all the meds I am currently on. I actually had a miscarriage about 2 months ago, so now I am even more nervous. Although I did miscarriage years ago before I even had UC, so I am thinking my body just doesn’t handle pregnancy well…I would love to be pregnant again soon though so I will keep you posted.

  6. Lesa January 28, 2013 at 8:16 pm #

    For 11years I have suffered, whilst doctors told me there was nothing wrong with me. Three days ago I saw a new doctor, he sent me for tests and this morning told me I have Ulcerative colitis. He told me it was the worse he had ever seen, my calprotectin was 722. He has referred me to a specialist and I am also having a colonoscopy. Not sure how bad it is going to be, I’ve been in a lot of pain for a long time now. All I know is I am very grateful to my new doctor, now that I know what is wrong with me, I can start to heal. No more toilet every few hours, no more farting ( my partner will be very happy to hear that, or should I say not hear that ).
    The past 5years have been the worst, but I am happy to say that 2years ago I gave birth to my beautiful baby girl. During my pregnancy I actually felt better than I normally do ( except for the diabetes ). And considering I have had 7misscarriages, 5 of which were in the last 10 years, I think it would be fair to say that uc may not affect pregnancy. Having said that, don’t leave anything to chance when it comes to your baby, and always trust your instincts. I knew that I wasn’t well, I just had to find the right person to listen to me.

    • Liz Kooymans
      Liz March 22, 2013 at 8:08 am #

      Lesa,
      I’m so glad you found a good doctor! It really stinks when they won’t listen. I still can’t believe the first gastroenterologist I saw told me diet wouldn’t make a difference. I hope you’re feeling better now that you know what’s going on! Are you trying a diet? If so I hope it’s going well! Now that I’ve been on a probiotic without bifidobacteria for a while, I’ve been pretty much symptom free, so I might try for a second kiddo soon….we’ll see.
      Liz

      • Carol from Colorado
        Carol March 24, 2013 at 4:50 pm #

        May I ask what kind of probiotic medicine you are using? And what does bifidobacteria mean?

        • Liz Kooymans
          Colitis Survival March 24, 2013 at 7:12 pm #

          Carol,
          I’m currently using an SCD legal probiotic called GI Pro Health SCDophilus 10+. Bifido bacteria also known as bifidis or bifidus is just a strain of “friently” bacteria for the gut commonly found in probiotics. For those who are having issues with the population of good bacteria in the gut like us UCers, bifido bacteria have a tendency to overgrow and cause further problems like the never ending flare up or the situation where you’re just barely maintaining remission. Bifido bacteria strains (any strain begining with “bifid..”) are not allowed on the Specific Carbohydrate diet. Here’s what the Elaine Gottschall (creator of the SCD) says about bifidis which is good info even if you’re not using the SCD: http://www.breakingtheviciouscycle.info/knowledge_base/detail/bifidus/
          Just something to consider when choosing a probiotic. I am so much better now that I’m not taking a probiotic with bifido bacteria.

        • bev March 24, 2013 at 9:56 pm #

          Hi Carol…the probiotic that I use is ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. I’m not sure what Liz is on, because mine DOES have bifido bacteria in it, and I’m doing great on it.

          Bev
          :)

  7. Maria July 26, 2013 at 11:14 pm #

    Hi,
    I was wondering what your “specific carbohydrate diet” you are one consists of and who lead you towards this treatment option? Please e-mail me–diagnosed this year.

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