When Will It Stop?

recent picture of me!

recent picture of me!

Intro:

1986: lived in Madrid for the summer. Partied hard til I woke up one day with bloody diarrhea. The doctor there told me I had colitis and that I needed to rest and eat a very bland diet of omelets, fish, applesauce. I did that for 3 weeks and was actually cured. I was 20 years old.

2002: Extremely ill for 6 months, then colonoscopy finds I had UC. After Asacol didn’t work, they then put me on Colazal and within about a month I was in remission. Symptom free for almost 8 years on the Colazal.

2010: Thyroid Cancer diagnosed at Mayo Clinic, Jacksonville. After surgery I was cured! Doctor who found the thyroid cancer was my gastroenterologist so I stuck with him.
2011-2014: Back and forth to Mayo Clinic for colonoscopies and various meds. Prednisone, enemas, Colazal the whole time and still I have flares 9 months of the year every year. Currently in a flare that has lasted 6 months, even though I gave up gluten and dairy.

After reading the entire book and cookbook last weekend, I am hopeful that I can turn this around with diet, as I did in 1986.

Some more about me:

I was actually born and raised very near Adam in San Mateo, CA. I went to college at Santa Barbara as well. I have lived in Spain a few times and speak Spanish. I have lived in Virginia for the past 20 years with my husband and two children. I am now a full-time portrait photographer. I survived thyroid cancer in 2010. I go to Mayo Clinic once per year to have my “health vacation” and I love my doctors there, but I still haven’t found them to be very forward thinking about the connection with diet.

Symptoms:

Bloody stool, bloody tissue, losing weight, fatigue, weakness, achy joints.

When Will It Stop?

Have been on a gluten-free, dairy-free diet for over 6 months, and yet my colitis has been in flare for almost the entire time. I have been on mesalamine enemas and Colazal for that time. A few weeks ago it was changed to Cortifoam enemas. And finally last week I had my fourth colonoscopy in 3 years and am now on Lialda and the cortifoam enemas (for 6 weeks).

My main issue with UC now is that I cannot plan anything for early in the morning. I cringe if I have to leave my house before 11:00 as most of my diarrhea is in the morning.

I would like to know how quickly people felt better after changing to the SCD diet.

Do they ever cheat?

What happens if they cheat?

How do they live the rest of their lives without a single grain?!

What foods do you eat for breakfast during a flare? Do you juice? How do you handle social events like the Superbowl parties? I had to bring all of my own food.

The SCD diet says I can have a little bit of dry wine. I actually don’t notice any difference whether I drink a little wine or not. Definitely have given up all hard alcohol.

How do you handle stress? I am highly motivated to make others happy, and often it leaves me stressed and unhappy (work) so I am sure that adds to my UC problems.

Has anyone ever used biofeedback? What were the results?

My family is supportive, and luckily one of my college roommates (UCSB) has Crohn’s so she and I can share the most intimate of issues. She has now cured herself with a strict diet as well and is off all medication.

Currently on Lialda 4pills/day. Cortifoam enemas (6 weeks). SCD Diet. Been in a flare since August 2013.

written by Kristen S

Adam, founder of iHaveUC lounging in the main galley of the "Conception", 80 ft. dive boat out of Santa Barbara...back in the day...(pre colitis)...in honor of Kristen, the SB party girl!

Adam, founder of iHaveUC lounging in the main galley of the “Conception”, 80 ft. dive boat out of Santa Barbara…back in the day…(pre colitis)…in honor of Kristen, the SB party girl!

Ask Adam:

“Fellow Bay Area, Santa Barbara aficionado: I am wondering how long it took you to be out of flare once you changed your diet (although you were on Prednisone, correct)? I have had good days and bad days, but yesterday I had a Tropical Smoothie and today I’m passing bloody tissue. I hate UC!”

Hey Kristen,

Thanks for sharing your story and including so many details!  And thanks for your really nice review on the ebooks I wrote.

As for your questions, it was only a matter of a few days before I noticed definite changes in symptoms once starting the diet.  Things were not completely 100% cleared up, but there was significant improvement which was awesome as I’d hit a standstill with that prior.  And yes, I was on a low dose of prednisone when I started the diet for the first time as I explained in the ebook.  Several months earlier I was on a very high dose (60 mg/day) and come August when I started my diet changes, I was down to 15-20 mg/day.  The full taper was very slow and not until end of October was I through with Prednisone completely.  I would say that between 4-6 weeks after starting the diet, I was out of the flare, with no more symptoms, and my mental state was not so concerned with UC as it had been for so long.

As for Tropical Smoothies…I would not go there if you are seeing symptoms.  Often there’s just too much sugar in those types of drinks for our fragile systems to handle when symptoms are present.  Better to wait til things clear up and make sure to make them on your own.

You’ve got a ton of other great questions I hope some others will jump in on, buy I wanted to let you know how I handle things like Super Bowl Parties (or bachelor parties), or birthday parties etc…

Real simple actually for me:  WATER.  Lots of water drinking and not being caught without a glass of water in my hand.  Especially when people are doing the whole “Cheers” thing.

Yes Yes, seems lame right.  Especially after all the hardcore partying I’m sure you got into down in SB back in the day, but it will help you.

As the years have rolled on, I’m realzing its not so much pressure from others to eat (or drink) things I know will hurt my colon.  But rather, its more a pressure that I put on myself not to offend others.  (For example, last night we had two friends over for dinner.  Ryan and Olivia.  We met them three weeks ago.  Anyways, the deal was we (Michaela and I) were going to make them dinner.  But…Olivia, the coolest girl ever, went ahead and made a pasta salad dish and brought that over too.  No NO NO.  Yeah it looked good.  Yeah, she wanted me to try it.  But NO.  No way.  Couldn’t do it.  Not allowed for me right!  I’d told her about my UC and how I treat it with diet last week when we were at her husband Ryan’s birthday party.  Everyone there drinking like crazy.  Especially the Spainard Carlos from Barthhhhelona.  No joke.  But not me.  Water, Water, Water.  OK, a tiny bit of red wine too.

Do your best.  Keep us posted and I wish you the best.

Adam

19 Responses to “When Will It Stop?”

  1. Tim B
    Tim B.February 21, 2014 at 7:25 am #

    I would definitely start keeping a food journal if you are not already. Even with sticking with a diet, there could be foods that are approved on the diet that don’t agree with you or possibly drinks. If you are still doing carbonated beverages or caffeine that could be a culprit. The diet is a good baseline, but I do believe modifications are critical to determine your specific triggers. Ultimately, depending where your inflammation is can determine which foods irritate the colon, which is a guessing game since doctors don’t seem to think diet impacts it. Personally, I got worse on a no-grain diet and do better with low-fiber white breads.

    Good luck.

    Tim

  2. Donna G
    Donna GFebruary 21, 2014 at 9:08 am #

    Eating SCD has worked for me. I could tell a difference pretty quickly. During a flare you need to eat lower insoluable fiber, cook vegetables longer, avoid foods that are super high in fiber like beans. I eat a lot of soups and stew and avoid raw foods during a flare. It makes sense if you think about it because your colon is ulcerated and insoluable fiber scratches the damaged tissue. For me personally towards the end of a flare I need more protein to heal the damage. I do find the diet a bit isolating but there are websites that deal with the emotional aspects and mostly I think you just have to be open and tell people what is going on with you and hope you can make them understand. For events if you bring something to share at least you’ll have something there that you can eat, and honestly it is such a healthy way to eat others will enjoy your food too.

    Donna

  3. SherFebruary 21, 2014 at 12:32 pm #

    Kristen,

    First of all y

    • SherFebruary 21, 2014 at 12:34 pm #

      Oops my comment above cut off! I was going to say… First of all your

      • SherFebruary 21, 2014 at 12:43 pm #

        Photo is beautiful! And I can relate to what you are going through with the…. Can’t be anywhere before 11 am as my issues are horrible in the AM… Do you use any anti-diarrhea med? Lomotil works for my morning flare ups and I can usually get through the work day. Yes, it is a prescribed med… But so is prednisone, colozal, cortifoam, etc… I used a “proctofoam” I wonder if that is the same. Anyway thanks for sharing, as for diet we are all so different in what sets it off. I can do gluten free meats, so as far as Super Bowl I could do the chicken wings without too much an issue… But like I said we are all different and if I’m in a horrible flare I have to agree with Adam… water :-(

        Sorry about the above comments, my iPhone had a freak out moment!

        PS try not to stress too much at work, etc… Ask yourself ” is this going to matter when I’m 90?” Prob not! … Hope you have a speedy recovery

  4. Kristen S
    Kristen StaplesFebruary 21, 2014 at 1:48 pm #

    Thank you so much for the support. I have now been on the diet for almost 3 weeks and I am 98% cured! If I cheat a little, like having a little square of chocolate, I see the results the next day. But I have also found, even in this short time, that when I get to that point I just need to dial it back to basics, and then my symptoms subside. This is life changing and I only wish I’d known about it years ago. As much as I dread the dinner parties where I can’t eat anything, I realize it’s a WIN to be out with my friends and not laying in bed in pain. Thanks to everyone here and to Adam!

  5. Roger W
    RogerFebruary 21, 2014 at 2:36 pm #

    Hi Kristen, I think you’re on the right track focusing on diet/lifestyle. There aren’t the kind of double-blind studies out there for doctors to confidently recommend diet as a treatment and in today’s litigious society they unfortunately have to cover their asses. No one wants to step out on the ledge and take a chance. The other issue is I don’t think doctors believe patients will reliably follow the protocols of the diet to the letter as it is a difficult thing to get used to. It’s easier to just have them take pills, etc.

    To answer your questions.

    Do I ever cheat? I did not cheat for a solid six months on the diet. After six months I had allowed a few cheat meals during a trip to Barcelona but then quickly got back on the program. Now, about a year into the diet, I’ll allow one meal a weekthat has a small cheat involved (a little rice with some sushi, a bbq sauce i know contains some sugar, etc) but I don’t go crazy. No pizza slices or six packs of beer sadly. Although it was hard in the beginning I’m so happy with how I feel I rarely have the urge to cheat.

    What happens if I cheat? On the trip to Spain I noticed by the end of the trip some discomfort but otherwise I seem to have got lucky. When I returned home I doubled-down on the VSL#3 for a week and have been fine since.

    For breakfast, flare or not (as I’ve yet to have a flare since my last prednisone cycle… I’m one of those weirdos who feels spectacular on prednisone, other than the insomnia and eventual withdrawal symptoms) I have a cup of blueberries with SCD yogurt (grass fed milk to boot!), a banana with almond-cashew butter, and scrambled eggs, and black coffee. I have one quality BM after breakfast before showering and I’m usually good for the day after that.

    I try to show up to social events pre-fed so that it’s not too much of a drag to avoid all the food I’m not allowed.

    I can’t seem to discern any differences amongst the wine varietals. All seem to go down easy and not have any negative effects on my guts. Scotch and bourbon seem to be fine in moderation as well.

    I work in a highly stressful environment but typically the stress is good stress vs bad stress. I take a zen approach to stress and use it as an educational tool. If I’m stressed out I try to tell myself that a learning experience has presented itself and things are good vs bad. A positive attitude seems to really help. And this is coming from a guy no known for his positive attitude. :)

    In addition to the SCD I take one packet of VSL#3 daily, 10-50grams of L-Glutamine, AOR boswellia extract and curcumin three times a day with meals, and Krill oil.

    Best of luck. :)

  6. Graham from England
    Graham leeFebruary 21, 2014 at 3:07 pm #

    Kristen,

    I lead a busy life as I’m sure most of us do so I’m always looking for the easy to apply options for my UC. Ive learned lots over the last 2 years and ditched a shocking diet but I refuse to carry an approved list around with me. I support anyone who can follow a strict diet but I just couldn’t manage it. I think the regular reading allows me to make instinctive and sensible choices when available. I may have my head in the sand but I don’t want the stress of a strict diet so mine are more a set of principles to follow. This is made easier as I am very well at the moment though I really do appreciate how we can get in a panic when it’s going in the wrong direction.

    Sleep is now a valuable commodity to me, for recovery and immune system benefits. I find it almost impossible to relax or sit still so I now have “relaxing activities” where my mind can escape if not my body. I also adopted an easy breathing technique which is very simple and brings me back down without having to stop what I am doing. http://eiriu-eolas.org/online-version/

    If you’ve not done so already consider your body’s oils. Many inflammatory illnesses are improved by bringing the balance back to where we were before the industrial diet. Some take fish oils and or cut out the bad, I swear by EVOO.
    You can find one of my posts about oils and EVOO by using the search feature.

    Yours is a great picture BTW, I really should renew mine, perhaps a little less smug, though I was a happy boy that day. Good health!

  7. Allison-3
    AllisonFebruary 22, 2014 at 4:26 am #

    Hi Kristen-
    I’d like to acknowledge what an incredibly strong person you are. And with that “can do” attitude you will absolutely beat this- just like cancer.
    It took me nearly 3 1/2 years to get serious about the SCD diet. I would go a few weeks and then fall off the wagon & it didn’t help that doctors were super unsupportive (and it felt so restrictive back then)…
    So, what helped me most in the beginning was doing the intro diet and each and every stage diligently. I ended up doing a stricter intro diet which eliminated nightshades, cow dairy, nuts and eggs for the 1st 30 days. I figured out I was reacting badly to eggs and nuts (oh and sadly chocolate). It has been nearly 6 months and I am slowly introducing those things again. But, I feel so good- I have a new career, I hike and can fully engage with my teenage boys… and a year ago I was still in bed most days. It was nearly impossible to imagine vitality back then.
    Oh- how I love a glass of wine but I also don’t drink at all now because I would bleed the following morning and feel like complete garbage. Now- I bring a bottle of kombucha to parties and restaurants and pour it into a fancy glass- it is my ‘mocktail’. And I know it is actually good for me and reminiscent of champagne (well kind of).
    You have a great attitude, you are doing the research and you found this site so you have the tools to get to remission. It is hard work but the best things in life usually are…
    All the best :)
    Allison
    P.S. I have discovered a plethora of tasty and creative recipes all over the internet and cookbooks through my library.

  8. Joe H
    Joe H.February 23, 2014 at 7:15 pm #

    Hola Kristen, At age 66 in 2012 I had my first flare from no where. I had just retired in Dec of 2011 and was working a part time job with Enterprise car rentals when this surprise illness hit me.
    I had two more flares in 2013 while on several meds. only prednisone calmed the flare, all three times. Through this site I learned about the SCDiet and probiotics. I was just finishing the last prednisone in Dec of 2013 and started the diet. So far so good.
    I cheated today with a big helping of beans & rice. Lots of rumbly in the tumbly … just gas. We’ll see what the morning brings. :)

    The diet has also helped with acid reflux which I’ve dealt with since the 70′s. I have not had any heart burn since January. I also dropped 15 pounds in just 2 mo. I do go to a gym two or three days a week. I spend 30 min. on machines & weights and 30 min on a stationary bike.
    I have 2 to three BM’s a day. They vary from firm to loose, but mostly somewhere in between.
    My wife and I are enjoying many of the recipes, found in the SCD book, “Breaking the Vicious Cycle”, Especially the muffins and Lois Lang’s Luscious Bread.
    Another strange benefit is that it seems to be controlling my cholesterol, even though I’m eating more eggs, butter, and cheese than before.
    I also make my own smoothies with fresh & frozen fruits and veggies. I haven’t made my own yogurt yet, I’m using a plain fat free Greek style by Wal-Mart’s, Great Value brand. The only ingredient is cultured non-fat milk.
    Peace & Blessings , Joe

  9. Joe H
    Joe H.February 23, 2014 at 7:18 pm #

    I always forget to check on email notification. :)

  10. Sarah A
    SarahFebruary 28, 2014 at 3:51 pm #

    Hi Kristen,

    Great photo by the way! Sorry to hear you’re still struggling with this, but it sounds like you’re doing so much better. I found the SCD diet difficult to adhere to; I’m still partially flaring (entering remission?) and most of what the diet recommends makes my symptoms worse, believe it or not. Bland carbs–but not gluten, I’m gluten-free–are some of the only things that give me a peaceful day (and night) as well as consuming lean proteins. Strangely, I do best on eggs and raw fish. Beer and hard liquor irritate my guts, however red wine doesn’t have an effect either way. I’ve had more than a few glasses at parties over the holidays and even with that extreme cheat my symptoms have been exactly the same. I gave up all alcohol for 60+ days straight between September and November and my colitis actually got much worse. I’m back to drinking only red wine in moderation and am continuing to improve. Though I probably have to credit most of that to the Remicade (the only med that made any difference at all) I’m also crediting the super probiotic VSL#3 and my attempts at stress reduction. I’ve just started acupuncture, both to treat the colitis and to help me stay calm. Though my physical UC symptoms haven’t improved, my anxiety about this and everything else is way down, and my overall energy is way up. I’ve started working out as rigorously as I used to and doing P90X, which wasn’t even an option thirty days ago. All I can say is, this disease is different for everyone, which means the cures are too. What works for you is what works best, so continue with your diet, play around with stress reduction techniques, and stay focused on the positive. You seem to have a very fulfilling and rich life outside of UC, I wish you the best!

  11. Tracy PerkinsMarch 1, 2014 at 8:48 pm #

    Hi . I just found this website and so happy that I have. I just was diagnosed with UC a month ago. Its been the absolute worst month of my life :( and yes reading that DR’s don’t believe that a diet helps makes it even harder to cope my situation seems a lot like Kristen’s, I have to be at work at 8:00am. Its soo difficult to be on time when your in the bathroom :( where can I purchase thus diet book? I also am on predisone and enemas (which I cried about having to be on at the age of 41). I appreciate and welcome any suggestions to help me get better. A month ago, I weighed 130, now down to 122. I am an active, beach living, kayaking , outdoors person. But not lately. Please help me get back out there…

  12. DavidMarch 7, 2014 at 3:43 pm #

    I think one of the big take-aways from this thread is that it’s going to take a while for you to figure out the changes that you need to make in order to keep this thing under control. For me, its SCD + Asacol (both ends) and VSL#3. If I deviate, I pay for it the next day. I find it difficult when I’ve had a number of “normal” days in a row as it breeds confidence and I think I can cheat because I feel good. Nine times out of ten I will regret it the next day. Its a big deal adjusting to a brand new way of living. And diet is such a personal thing – we actually grow to LOVE the foods that we enjoy. Thus giving them up ain’t easy. Personally I am still in denial about chocolate and alcohol. I’d rather give up air! I wish you guys all the best in figuring out your unique formula.

  13. chris arnoldMarch 17, 2014 at 4:12 am #

    Like you i was in my twenties when i was first diagnosed. Definitely a stressed professional life contributed then and for the next 30 years. I had 5 big flairs and all were handled with the typicl drugs. Now at 53 (male, married, 3 kids) i fired my gastro doc a year ago before going from too much prednizone to a recommendation to start Remicade. I then tried the SCD diet but followed it losely with poor results. And my condition was bad (active UC only in the simoid area).

    I should mention that reading this site, finding this site was a revelation. I cried to learn i was not alone and there were options beyond meds. In April 2013 i went cold turkey and followed SCD 100%. It was hard. My family and friends were great but it is a real sacrifice especially for someone who loves food. I was ok with alcohol. Mostly whiskey and red wine was fine, thank god! But i stuck to it and around October things really stared to improve. By November i was without symptoms, went off my diet slowly starting on Thanksgiving and by February 2014 symptoms ramped up. Well, i am back on the diet and after 4 weeks see marked improvemenr. This time i will stay on for the recommended one year after symptoms.

    Try the diet. It is worth it. I cant imagine living on drugs and the fear of complications from the drugs ever again. I have lost weight, feel better and the dicipline of dieting strengthens my will in other areas. My kids see it as a strong example and my wife loves discussing her occasionaldiets in contrast to SCD.

  14. Kristen S
    Kristen StaplesMarch 19, 2014 at 11:20 am #

    I want to follow up and say that six weeks into my SCD diet and I’m feeling great! I am having no blood, only one stool per day. I have actually started LIKING the way I am eating, and enjoying learning how to cook! I feel better than I have in years and people are telling me how healthy I look. Today I went in for my annual check up with my regular doc and I had nothing to report – which was major for me! I actually envisioned a life without doctors and I hope that vision comes true. I am spreading the word, telling everyone about SCD and IHAVEUC and Against All Grains cookbook, etc. So happy I found this!

  15. Joe H
    Joe HayMarch 19, 2014 at 12:03 pm #

    That’s great news! I started SCD right after Christmas last year. It has helped more than the symptoms of UC. I dropped 15 pounds in the last three months, my blood pressure is normal and lower than it’s ever been, it’s cured my acid reflux (I took Nexium and Prilosec for many years) so I take no meds for it now. It even lowered my total cholesterol.
    I’m being quite daring now and adding in thing not in the SCD plan. After only 4 months, I’ve added rice and beans. Being half Puerto Rican this is a meal I’ve eaten all my life. So far so good, I’m not seeing any change in my BM’s. I do like to cook and I’m enjoying trying all the new healthy recipes.

  16. Karen MendelsohnMarch 20, 2014 at 7:50 pm #

    I have a grandson newly diagnosed and two
    different GI docs have discouraged him from
    Any diet ideas. I have given him Adam’s site
    and info on SCD diet, but he’s hesitant to do
    anything other than Dr’s orders ( meds) .
    He’s had a rough go since diagnosis in Dec.
    What’s with these doctors? So many positive
    feedback on diet controlled symptoms….

    • Joe H
      Joe HayMarch 21, 2014 at 12:52 pm #

      I would say that initially his body may need medication to relieve his system, to give his GI tract a chance to calm down & heal and at the same time start watching his diet to eliminate things that would aggravate his symptoms.
      I started by taking a high potency probiotic and going on the SCD diet plan and so far after 4 moths I have normal BM’s and no symptoms of UC. It seems we all go through the same routine with the drugs. They try one, then another AND another. They increase the strength and sometime we end up with bad side effects that make our condition worse. Food has no side effects, if it doesn’t work for you at least you didn’t poison yourself. A steroid called Prednisone was the only drug that got rid of my symptoms totally, but you may have to deal with weight gain, joint pain and acne, and long term use is not recommended.
      I had three flare ups in the year I was on medication.
      I feel that if we all get the proper exercise and rest and eat a proper diet less of us would even have this disease. If no one got sick what would doctors & drug companies do? …$$$ is on their mind in my opinion. ;) Joe

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