Diet Is Just a Piece of the Puzzle {Ulcerative Colitis Update}

Helloooooo!

I feel like I have so much to tell you guys on the colitis front. I almost feel like I am finally starting to figure things out. Well, sort of. I’m still not in total remission, but I’m getting close, and I definitely have a better perspective on the disease. More on this in minute. First, a quick recap from earlier today!

My new favorite breakfast: Oatmeal with sweet potato + apple puree with ground flaxseed meal and chicken sausage. It’s a delicious sweet + savory combo, and it is soooo incredibly filling””no need for second breakfast today!

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After breakfast, Mal and I dropped off Quinn at daycare and then drove to MGH. We both had doctor’s appointments this morning, so we carpooled together. We took the HOV lane and ended up arriving a good 30 minutes before our appointments, so we popped into Whole Foods for a couple of iced coffees. (DO YOU SEE THE SNOW!?! Ugh, go away!)

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I actually ordered a decaf iced latte made with rice milk, which was excellent. I lovvvvveee the espresso at Whole Foods!

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Mal and I laughed about the ridiculously long straws at Whole Foods, so we snapped a pic on the way out. Wicked long straws? I dunno. It’s the little things in life! Haha!

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I had a two-hour Remicade infusion””everything went fine””and then I met Mal for lunch at Anna’s Taqueria. I ordered a chicken and veggie quesadilla with salsa and, of course, it was de-lic-ious. We are such Anna’s lovers.

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So, colitis stuff”¦ a lot has happened in the past few months. Ok, where do I start? How about a quick recap?

Last October, I went on Remicade. It started working immediately, but I was getting frequent “loading” infusions, so there was a lot of Remicade pumping through my body. In December, I started getting infusions every 8 weeks, and I made it to February without any major issues. However, I was still having some minor symptoms on and off””nothing major (a little blood, a little urgency, a few more trips to the bathroom than usual), but nothing too scary.

Around this time, I started to get a little frustrated with my symptoms. Basically, I was on this hardcore, chemically drug, but I still wasn’t 100% healthy. I know Remicade is a wonderful drug and, obviously, it gave me my life back, but I wanted to be completely healthy with no UC symptoms. I started to look into holistic options again, and I made an appointment with Mark Mincolla, a natural health care practitioner, who is kind of a big deal around here. He’s helped thousands of people””some of which I know personally””so I thought he might be the key to making me better.

I went to my appointment, and, truthfully, I’m not sure how I feel about Dr. Mincolla. He was friendly and personable (a totally nice guy), but when I told him I had Ulcerative Colits, his reply was simply “that’s easy,” which was extremely off-putting. EASY!? Oh, yea, dealing with this disease for the past four years was walk in the park! Jeez, Louise. BUT, the diet he gave me has actually calmed down my symptoms, so that’s good. He knows his stuff.

I was super strict with the diet for about a week and then it started to make me a little crazy. It’s basically an anti-inflammatory diet with a bunch of specific restrictions, but it was reminiscent of the many diets I’ve done in the past, and it was starting to make me pretty unhappy. I’m okay giving up some of my favorite foods, but when it’s ALL OF THEM (or at least a lot of them), it makes me sad, especially in social situations and when dining out. It just makes me feel like I am missing out, ya know? But, OF COURSE, I will give up my favorite foods for the benefit of my health. I just thought there had to be a better way to balance the two or at least think about holistic healing and improving my health.

Insert the Crohn’s & Colitis Nutrition Foundation (CCNF)!

The Crohns & Colitis Nutrition Foundation is a non-profit organization, which was created to provide affordable nutritional and lifestyle services to those suffering from Crohn’s Disease, Ulcerative Colitis, Multiple Sclerosis, Fibromyalgia, and other autoimmune diseases. They believe patients can drastically change their health and reverse symptoms of their disease through nutrition. The foundation connects experts (Client Advocates, Life Coaches, Nutritionists, and Educators) with patients and organizes specialized Nutrition Heals Retreats with the goal of lifestyle changes and ultimately remission. It’s a pretty amazing organization, and they put me in touch with the co-founder and fellow UC suffer, Dane Johnson.

Dane Johnson was diagnosed with Ulcerative Colitis in 2009. After months of treatment with western medicines, he was on the verge of liver failure and his weight was below 140lbs. Faced with surgery, he decided to use nutrition and lifestyle management to change his life, but it wasn’t easy. During  the hardest part of Dane’s transition, Phyllis Johnson remembers her son saying: “Mom, is there a place I can go where someone can help me get well? I can’t do this myself!” Dane’s new regimen helped him gain 30lbs in 60 days! Today he is living a successful, healthy life; symptom and drug-free!

Talking with Dane was amazing. He talked to me for almost 2 hours on the phone, and it was so great to connect with someone who has lived the IBD life and knows how unpleasant and frustrating the disease can be. There were so many things that could go unsaid and didn’t need to be explained. Dane also said so many things that really hit home and changed my perspective on how I live with the disease, like there’s SO MUCH more to the puzzle than just food. Here are my favorites from our conversation:

  • Healing is more than just physical. The emotional part of how you perceive the disease is really important. If you have positive energy, there can be a huge ripple effect in how it affects healing.
  • What you eat is huge, but it is just a piece of the puzzle. Colitis (and other autoimmune diseases) cannot be reduced to just one thing. You need to look at the big picture and how you are living your life.
  • Your goal is to be in remission. Dane said: “If Remicade is working, you are in a great position. Don’t think drugs are bad.”
  • Think about what you can do to solve day-to-day/lifestyle problems. Are you having trouble sleeping? Go to bed earlier. Read a book. Use essential oils. Tackle one thing at a time to move yourself toward remission; otherwise, it can be too overwhelming.
  • Healing holistically takes awhile. If one thing doesn’t work, find another way. Look for solutions. Pay attention to small victories to keep you motivated. Believe you can heal yourself.
  • Be your own doctor. Listen to your inner voice. If it makes sense as a human being (specifically in regard to diet), do that (i.e. gluten-free bread versus a potato). Basically, eat whole foods and pay attention to how they react in your body.

Dane had so many wonderful words of wisdom to share, and they left me feeling more in control of my health than I have ever felt since being diagnosed with UC. For once in a long time, I really, truly think I can get better. Someday, I would like to be off Remicade and live a drug-free life, but, right now, I am focused on living the healthiest and happiest life I can. I will continue to update you guys in the coming months with how things are going.

Dane also told me about Food Matters TV, which I haven’t checked out quite yet, but I wanted to pass it along as a resource just in case you haven’t heard of it.

The end. (This was a much longer post than I planned to write!)

60 Comments

    1. @Jeff Doroh: It’s just steamed and pureed apples and sweet potato mixed into oatmeal. I make the pureed apples + sweet potato in our baby food maker, but you could easily do it in a blender! 🙂

  1. Great to hear things are looking up! The diet changes will hurt initially but the benefit of feeling awesome after a while if you stick with it will make you want to stick to it…aim for 80% of the time 🙂

  2. its called discipline and accepting your illness
    the food you put in your body is extremely important
    just because you exercise doesn’t make it okay to eat unhealthy foods
    the information you give out to your readers is not a way to promote your blog

    1. I am pretty sure Tina is just trying to help others. No need to write rude comments. Thanks Tina for your blog, I value your honesty with your readers and that you are normal! 🙂

  3. I am so glad you are feeling in control of your health again; that is such a powerful feeling. Dane seems like a wonderful, inspirational person. I’m sure living with UC can be a nightmare, but a positive attitude can be so helpful. Stay strong!

  4. Thank you for sharing and for the resources! I just had my first remicade infusion last Monday and within 48 hours the improvement was undeniable. 6 months of a flare seems to be tapering. And while I am not thrilled about being on something so hardcore I can’t deny what it is doing. As I walked to the train this morning for the first time since October it hit me that I wasn’t panicky about finding the train car with the bathroom. I don’t think there is any way to explain to someone just how hard it can be, and isolating.
    But I understand what you are saying. If I heard one more thing about a cure all diet, or was questioned on my decision to eat something I was seriously ready to punch someone. However as the remicade (hopefully) continues to work it’s magic I do plan to pay closer attention to how dietary choices effect me. Before it was impossible since I was miserable 24/7. But I do think it all is intertwined.

  5. big hugs to you. UC is a huge deal (what kind of a dr says it isn’t!?😔) my hubby has crohns so I’m very familiar with te symptoms, drugs, etc. No advice really just a big hug (and ignore that stupid comment from Kim above…you eat well with an appropriate number of indulgences and you exercise like a crazy person. You are just fine!!!😄😄). Keep on posting. I love your blog. 😃

  6. I am glad you are starting to get more pieces to your puzzle figured out. Health issues are not fun and can be so draining and time consuming to deal with. Glad you are looking into many different options again to help you feel better and not getting down on yourself for going on the medication. Everybody is so different and I can understand your frustration when the doctor made that statement. Love these updates.

  7. Thanks for sharing! I know it is always a relief for me to talk to people who have been through things that I have: addiction, recovery, or just trying to find a way to live life on life’s terms. There’s a level of understanding from those people that you don’t get from those who haven’t experienced it.

    Im glad that you are feeling better about everything and I know you’ll figure it out!

  8. As always, I am so happy that you are feeling better, and that you are finding answers! And thank you for sharing about CCNF–definitely something that I need to check out. I can’t tell you how many people over the years have tried to tell me that “if I just ate [this way]” that my Crohn’s would go away. Well, I can tell you that it just isn’t that simple! These are diseases that are individual to each of us, and that means personalized therapy. Diet is a big piece of the puzzle, but sometimes you need more. I’m not so sure how I would have reacted if someone told me that IBD was “easy.” That completely negates the struggle that you have been through. Honestly, I might have walked out on him. But some doctors absolutely lack social graces/bedside manner, and that can be a tough pill to swallow (pun not intended, but a good one nevertheless, lol).

    Ok, a long comment, but I am just happy that you are finding help that seems to be putting you in the right direction. Because above everything else (including me wanting to punch that guy in the face and tell him that if it was “easy” I’d be happy to give him my entire digestive system and would trade. But I digress) you improving in a sustainable way for your life and body is the most important.

  9. i dont know why but this post almost made me cry! i am finally tapering off of steroids and on a two drug regimen for my recent (most likely diagnosis) of Crohn’s disease. i found a new doctor who really listened to me and had a whole protocol for IBD. i am hoping to get as close to 100% as possible. my diet is the next change i am making…i am going to try gluten free (for the most part) to see how i feel. my doctor also recommended PepoGest…it helps with digestive discomfort. wanted to share in case you hadn’t heard of it and it might give someone relief. thank you again for sharing your IBD journey. i have found it extremely helpful.

  10. I was just diagnosed with celiac disease. Not the same thing as ulcerative colitis, I know, but some of the things you have shared in this post and linked to have inspired me. Thanks for sharing your story and I wish you the best!

  11. Over 10 years ago my mom took us all to Mincolla. It was really interesting. And I followed it strictly for a while. It was surprising to see how many foods fell into the “no” camp. I was also a vegan at the time, so that impacted things too. Now I don’t – but I am mindful of it.

    My mom ended up going to him again a few years ago again and went for a long time. She also referred a number of people to him. She definitely swears by him!

  12. I can’t imagine how frustrating what you’ve been through has been. My Mom has RA and she struggled for years to find her “balance” aka the right way to deal with it for her. There’s no one right way for everyone. That’s for sure!

  13. This was so encouraging, thank you! I’m going through another round of trying to figure out why my body is screwed up, mostly related to digestion issues. What you said at the end about being your own doctor is so crucial! There’s that balance of listening to the highly educated professionals, then also researching from reputable sources and following your gut. Thank you!

  14. Thanks for the UC update. I was debating with my husband this AM about calling the Dr. as I am in the middle of a UC flare but scared that they are going to put me back on prednisone. Its so uplifting to hear other people’s experiences and to know that I am not alone.

  15. This is great. I was diagnosed with rheumatoid arthritis last May and I’ve been trying all sorts of diets to control the disorder. This really gave me some insight, so thank you!

  16. Hi Tina! I’m a long-time reader, and I just wanted to thank you for sharing these updates about your UC. I don’t personally suffer from it, but I still find all of this information fascinating (maybe that makes me super weird!). I tend to lean toward the belief that our food and overall nutrition is the best medicine, but I’ve definitely learned and continue to learn that it’s all about a balance and finding what works for each of us individually. I wish you the best of luck with everything!

  17. Hi Tina,

    Can I just say thank you so much for sharing this aspect of your life?!

    I was diagnosed with Ulcerative Colitis during my first year of college. It’s such a confusing disease with so many ups and downs. Hearing your story and your positive attitude means so much. You are so real and that means so much.

    Knowing that others are going through a similar journey helps me stay positive. Thank you!!

    Brenda

  18. Tina thank you for this post . I have an AI disease also and have found that I have to be so proactive about my disease with MD’s. Sometimes I feel like I am
    Teaching them! So thanks for confirming that we can and should be our own best advocates !!! Also thank you for being so real .

  19. It’s so wonderful to hear that things are looking up for you health wise. Especially with your marathon coming up! Praying for a healthy and settled stomach.
    Savory oatmeal?! What? I don’t know if I could necessarily get behind it, but I do love sausage!

  20. Wow Tina, thanks for sharing all of this! The CCNF sounds like such a great resource and one I will remember. It’s so true, living with UC is awful and your goal is to always remain in remission but it sounds like you have such a good outlook now. It would be so easy to get pissed and want to give up, but you are staying strong and beating this thing! So proud of you!

  21. Thanks for the update Tina! I’m always wondering how you are doing and praying you are feeling better.
    Dane is so right! It’s never just one thing when dealing with autoimmune. Diet is very important and going really strict (at certain points in time) can be very helpful but also trusting in yourself and believing your body can heal itself is super important. It’s important to dig deeper into the emotional aspect of the disease. Some triggers stem from emotions so it helps to understand what those are. You can journal, meditate, speak with a counselor, EFT tapping, cranio sacral therapy (CST), many holisitic therapies that can help with this.
    Wishing you all the best! You will get there, trust in the process and take it one day at a time. xoxo

  22. As a marathon runner and Boston qualifier and person with UC I am wondering if your Dr has discussed “runners colitis or ischemic colitis” with you which could cause the same symptoms as UC flare and look similar on endoscopy ( the only difference is biopsy from what my dr said). I was on prednisone while training but still had symptoms and it turns out I had this on top of UC. It sounds like your Dr. Is well aware of your training, running and active lifestyle so he/she may have already ruled this out but it may be worth looking into. From experience, the only treatment is reducing running. But as always, everyone is different and should only follow their Dr’s advice. I’m just trying to help find answers. Good luck at Boston!

    1. We’ve talked about “runner’s colitis,” but it doesn’t seem to happen to me. Or at least my symptoms haven’t gotten worse during marathon training. I know some people get stomach issues while/after running, but, luckily, I haven’t really experienced that.

  23. I imagine that having someone like Dane to talk to may make you feel less alone with this illness, which surely can only help. CCNF seems like a wonderful organization. Your point about diet alone made me wonder how exercise impacts your illness. I imagine that most work outs help you mentally as they do for everyone. I was wondering if CCNF advocates for certain types of exercise and/or suggest that certain ones be avoided? Have you noticed certain workout routines you regularly perform (ie running or crossfit) makes it better, worse or no different?

    1. I actually think not exercising makes my symptoms worse. Anytime I take time off from it, I get worse. It’s so good for my mental health, and I enjoy it so much.

  24. Tina, thank you for sharing this. I had no idea. Your story reminds me of Meghan Telpner, a Canadian holistic nutritionist. I have learnt a lot from her undiet way of life. I pray that as you continue with this journey, you will be able to find solutions that are best suited for you. By reading your article, I know that with your positive mental attitude and open mind, you are on your way there :))).

  25. Tina,

    As everyone else said, THANK YOU for sharing. My daughter who is 6, has UC. I will look into all the link you mentioned. I have been trying SO HARD to find alt methods, besides drugs, for her UC. Poor girl, I have put her on SO MANY different diets… She has urgency (has accidents in her undies almost daily) she has blood (not a lot but it looks like a lot in the water) BUT, she has a shape to her poops (TMI) and no pain (thank GOD!) You seem SO FINE on your meds. No side effects at all??

    Please advise…

    1. Right now, I don’t experience too many side effects from the Remicade. I have low platelets, frequent dizziness, and bloody noses, but they’re all pretty minor.

  26. Hi Tina!

    Thank you for sharing your story, I know it’s difficult to share with the world such a personal condition! Crohns and colitis runs in my family, I was ‘lucky’ enough to end up just with IBS. I have been able to control it with diet, thankfully. But, trust me I know the difficulties of trying to live a ‘normal’ social life while balancing the internal issues.
    Thank you again, and I’m glad to hear you are starting to feel better 🙂

    Take care

  27. I have to say ive never had oatmeal with sausages and sweet potato(Sounds more like a dinner to me) but, everyone has their preference 🙂

    Im glad you are feeling better with the whole colitis situation. Ive always loved the holistic approach to things and Im a firm believer that we can heal ourselves from the inside out. However, I also understand that drugs can make an incredible difference as well. So perhaps a balanced combination is best in certain situations.

  28. Thank you for sharing! So glad that this update is a good one! It’s always nice to hear about someone else’s experience, especially one I feel like I can relate a lot too (UC diagnosed 2013). And you are SO right, diet is just one piece of the puzzle. If it were that simple, everyone would be in remission! Keep trusting your instincts, I’ve found they’re usually the most accurate (even if it doesn’t agree with the dr.)

  29. Thanks so much for this post. One thing I’ve learned after years with UC is that everyone is different and different foods affect each person differently. They even affect you differently at different times. It’s a lot of trial and error and you have to take the time to figure out what works for you and what doesn’t. I appreciate you saying the diet is only part if it, because some people think if you just stop eating this or start eating that you’ll be fine. But it’s not that easy. Nothing about it is easy.

    Best wishes in figuring out this horrible disease and thanks for sharing your experience and progress.

  30. Thank you so much for sharing this. I’ve got UC, I’ve been in active flare since November of 2014 and after going on Prednisone, I noticed some definite decrease of symptoms related to the UC, but the side effects of the Prednisone were just as bad. I felt like I traded a deal with the devil for a deal with his demons. Now that I’m down on my Prednisone taper to 10mg, all of my symptoms have come back and actually come back worse.

    Today I finally got the word that I’ve qualified to do Remicade, and I’m over-the-moon and so hopeful that I’m finally on the brink of ending up where you are. And thanks to people like you, I’ve overcome my fear of talking about it. Thank you so much!

  31. Hello,
    Is there any way I could exchange emails with you? I was diagnosed with ulcerative proctitis last year, but my condition has gotten progressively worse. And after a visit with my GI today, he thinks I am part of the rare 10 % of people whose proctitis evolves into colitis. :'( Needless to say, the past two weeks have been some of the worst days of my life experiencing my first real flare up. I live on the south shore and work in the city. I am starting a few new medications but I really want to try and find a way to be in remission without meds. I was debating on saving up the money to see Mark Mincolla or a naturopathic doctor. (I’m young, 23, full time nanny, full time student, who pays all of her own bills, tuition etc and therefore $300 is a lot to spend on a doc visit). I would love to ask you some questions if you are available for that. Thanks!

  32. I am so frustrated. At this point I don’t know what to eat. I was diagnosed with ulcerative colitis disease maybe 4 months ago. To date it has been 1 year that I have not had a normal bowel movement. At this point it would probably hurt me. I’m tired of running to the restroom all day every day I’m to the point I’m only eating once a day. Still chronic in diarrhea. The medication I was prescribed first I was allergic to. The second one medication did nothing. So at this point I’m in limbo , sad depressed aggravated. Can anyone give any advice please???????????????

  33. Hi Tina and other people of good will on this blog,

    Many thanks for sharing your story and journey, along with resources. I hope that you are continuing to feel better 🙂 I’ve been trying to access the Crohns Colitis Nutrition Foundation website — now called nutritionheals.org. without success. Anyone knows what’s going on?

    Cheers

  34. I, too, have Ulcerative Colitis. What you are consuming is about what I was consuming about a couple of years ago. I got even stricter with my diet after getting another flare up and having to get Remicade infusions plus oral 6MP. I now follow a low fodmap, anti-inflammatory diet. High fodmap foods give gas and diarrhea, which triggers inflammation, and of course inflammatory foods cause inflammation.

    The breakfast you are consuming includes apples and chicken sausage. Apples are very high in fodmaps. The chicken sausage probably contains onions and/or garlic (although there is one kind I found that doesn’t). Onions (the white part) and garlic are high in fodmaps. I tried rice milk in the hospital and really liked it. But when I got out of the hospital, I couldn’t find rice milk in the stores that didn’t have something pro-inflammatory added to it. So I had to scratch rice milk off my list of things I could consume. The wrap is probably made from wheat. Wheat causes leaky gut, which causes fructose malabsorption, which can trigger flares. Leaky gut also causes many auto-immune diseases. The wrap looks delicious though. I love wraps. I used to eat Indian veggie wraps all the time.

    Foods/ingredients high in fodmaps and/or pro-inflammatory:

    cane sugar
    artificial sugars
    substitute sugars
    lactose
    high fructose (including honey and juice)
    polyols
    wheat, rye, barley,…
    legumes
    omega-6 oils
    omega-6 nuts
    caffeine
    chocolate
    onions (white part)
    garlic
    GMOs

    Low fodmap and anti-inflammatory:

    low fodmap vegetables (Monash publishes a booklet on fodmaps)
    low fodmap fruits (Monash publishes a booklet on fodmaps)
    homemade yogurt (made with A2 milk, search for the SCD diet for how to make)
    homemade bone broth soups
    fermented foods, such as kimchi and sauerkraut (high in probiotics)
    chestnuts and macadamia nuts
    juiced vegetables (do not juice fruits)
    aged, hard cheese (doesn’t contain lactose)
    coconut milk (with no additives, from the Chinese food store)
    unsweetened oatmeal
    rice, rice noodles
    “real” extra virgin olive oil
    poultry
    fish
    seafood
    low fodmap herbal teas

    I make everything from scratch, even ketchup.
    If it tastes out of this world, then there is probably something in it that is high fodmap and/or pro-inflammatory.

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