• Enjoy Your Life

    October 4, 2012

    Yesterday afternoon, I headed into Boston for my appointment with my new gastroenterologist at MGH.

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    I drove to the T, parked my car, and then took the train into the city. I don’t trust the MTBA to get me anywhere without an issue, so I always give myself plenty of extra time when I take public transportation into Boston.

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    Surprisingly, everything went smoothly, and I ended up at Charles/MGH about 30 minutes before my appointment, so I popped into Whole Foods to do a little grocery shopping and buy a snack. (I always need a snack.) Plus, I heard a rumor (thanks, Kim!) that Whole Foods now sells coconut aminos, so I went in search of a bottle.

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    Success! Found it!

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    A lot of the recipes in Well Fed, including the Paleo Pad Thai, call for coconut aminos, but I haven’t been able to find them, so I’ve just been making the recipes without. Now, I’m really excited to taste those recipes!

    Then, it was time for my doctor’s appointment at the Crohn’s & Colitis Center. As soon as I saw the office, I felt really good about my decision to switch doctors.

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    So, my appointment… I don’t even know where to begin, but it was awesome. I love my new doctor. He’s friendly. He’s funny. He listens. He doesn’t blow off my questions like my previous doctor, so he’s already an improvement! He also told me he only drinks water and beer, so I think we’re a good match. Haha! But, in all seriousness, I think he’ll be a great doctor for me. I met with him and his Nurse Practitioner for more than an hour, and they answered all of my questions.

    Ok, let me see if I can summarize what we talked about. Let’s start with diet since it’s been such a hot topic on CNC lately.

    I told my doctor about all of the changes I’ve made to my diet and what I’ve been eating. He listened, took it all in, and then replied: “Enjoy your life.” (Obviously, he could tell I was a tad stressed out about it.) He explained no single diet or eating plan works for everyone with ulcerative colitis. What you eat and how your body responds all depends on what part of your intestine is affected and what symptoms you have. Then, I asked him about the Specific Carbohydrate Diet and Paleo and whether any of his patients have had success with either of them. He said, yes, some of his patients felt better when they followed these diets, but it was difficult for them to maintain long-term. He said if eating a Paleo-like diet makes me feel good, I should keep doing it.

    I also asked my doctor about specific foods (nut butter, protein powder, red meat) and whether I should be eating them or not. To this, he simply replied: “Eat whatever you can tolerate.” He explained that ulcerative colitis varies from person to person and even changes within the same person over time. What works for one person might not work for another, so I really just need to figure out what foods work best for me. He did mention, however, during a flare, I should avoid nuts, seeds, corn, raw veggies, and salad since their “shape” can upset the intestines. Additionally, he said, endoscopically, certain foods don’t heal the intestines, but it’s an organ that is constantly repairing itself.

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    Ok, then…

    Enjoy your life.

    Eat whatever you can tolerate.

    I’m planning to pretty much keep doing what I’m doing with my diet because it makes me feel great, but I’m going to play around with some new (and old) foods to see how they jive with my system and affect my symptoms. I’ve sort of been doing this all along, but, this time, I’m really going to focus on enjoying my life and not letting my food choices stress me out.

    As far as what this means for the Paleo Challenge, Mal and I chatted about it last night and we decided we’re still going to participate—we don’t want to let down our teammates and we still want to achieve our fitness goals—but we’re just going to do our own thing and see how closely we eat a Paleo diet. Hey, it’ll be a fun experiment for us!

    Onto exercise… I asked my doctor about intense workouts and whether they’d bring on a flare or affect my symptoms, and he said probably not. I told him all about CrossFit and the type of workouts we do there, and he told me they shouldn’t be an issue. Sweet. I’m going to CrossFit tonight! BOOM!

    And a long-term plan… this is where things got tough for me. (I may or may not have cried because I’m a loser.) I asked my doctor about my ultimate goal of managing this disease without prescription drugs, and, in the nicest way possible, he said it’s probably not possible, especially since my body isn’t responding quickly to the steroids, which means more of my colon is probably infected. (Of course, he doesn’t know this for sure. He wants to do a colonoscopy if I’m not better in 4 weeks when I go for a follow-up appointment.) So, then, I asked him what a good long-term plan would be for me, and he replied: “Get off steroids, stay on Colozol, keep taking VSL#3, and do a handstand.” (Not going to lie, I love that he threw “do a handstand” in there. I think he just wanted to make me laugh because I was on the verge of tears, but it was much appreciated.) I’m not totally psyched with his answer, but I know I’ve spent way too much time and energy trying to figure out this disease, which just isn’t possible, so accepting this and moving forward will hopefully do me some good.

    So, yea, good news and bad news, I guess. I have a lot to think about and definitely a road to recovery ahead. I’m not sure what else to say because I’m still trying to process everything, but I want you guys to know I truly appreciate all of your support over the past several weeks. It hasn’t been easy for me, especially with all of my diet changes and attempts at weirdo home remedies, but it means a lot to me that you continue to read and show your support.

    Snack

    After my doctor’s appointment, I walked back toward the T and then broke out the snack I bought for myself at Whole Foods. When I opened my bag, I was surprised to see the coconut aminos spilled all over. GAH! (The top of the bottle wasn’t screwed on all of the way.) I cleaned up everything the best I could, but, as you can see, my snacks were covered in coconut aminos.

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    On the drive home, not even kidding, the “check engine” light went on in my car. Seriously, car, wtf?

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    The car repair shop was on my way home, so I swung in to get it checked out. It turns out it was another sensor issue. (The rain may have confused it and caused it to turn on.) The mechanic cleared the codes, so the “check engine” light is off for now. Hopefully, it stays that way!

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    Dinner

    Dinner was Pot Roast with Cider-Maple Gravy and Mashed Butternut Squash and it was really good. It was a simple recipe (just 7 ingredients), so it sort of tasted that way. Not bad, just not amazing, ya know? I ended up adding curry, paprika, cinnamon, and onion powder to my butternut squash to jazz it up.

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    I’m off to NuVal for my last time!

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    { 102 comments… read them below or add one }

    tammy brown October 4, 2012 at 4:39 pm

    I am so happy to hear you have found a doctor you like! That is so important, espcially with UC. I have it as well. I love my GI doctor & if I didn’t it would make having this disease rougher. So many things that he said are exactly what my GI doc has told me in the past…minus the handstand. LOL So good to hear. My first 2 years with it were rough, finding out what your body will tolerate, getting the right drug for you, etc. But once you work out all the kinks it’s not so bad. At least this has been my experience. I take my illness very seriously, it’s a part of me and I had to accept it. A healthy diet, no caffeine & taking my meds daily has been my answer. Did your doctor say which stage of UC you are in? Mine told me there are 3. 1 being the lowest. My first colonoscopy said a 1, but after 2 years of unhealthy eating, not taking my meds, etc it went to stage 2. : ( However, I’ve been in remission for over 2 yrs now because of my meds and healthy eating and I am enjoying life.

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    Tina October 4, 2012 at 4:43 pm

    He thinks I’m on the border of 1 and 2, but he won’t be totally sure until he does a colonoscopy. I’m glad to hear you’re doing ok with it!

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    Kristy @ Southern In-Law October 4, 2012 at 5:38 pm

    I am so glad that I’m not the only one who cries at the doctor! Every time I have a specialist appointment, I always end up in tears out of frustration because I feel like I only ever hear “well we’re not sure” or “we don’t know” – or the worst “only time will tell”.

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    laine October 4, 2012 at 5:42 pm

    That must have been such a relief to meet with your new doctor (and I love that handstand goal, since that was one of mine last year!) but also frustrating that there is no certain cause/cure/thing that will work for everyone.
    One of my good friends has UC and is gluten free and is doing the paleo challenge (and is a cross fitter).
    And I have cried at the doctor a bunch of times, I think that’s normal! Health issues can be scary and frustrating.

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    Karyn October 4, 2012 at 6:00 pm

    Happy to read that there was good news coming out of your appointment. I’m going tomorrow to my new GI that had ordered an MRI for me so I’m getting those results. Good news so far is that it’s still ulcerative colitis and not Crohn’s. You’ll be back on track soon! It’s all about finding out what works best for your body.
    What is VSL#3? Is that a prescription?

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    Christina @ The Beautiful Balance October 4, 2012 at 6:39 pm

    Doctors make all the difference in the world, depending on their personality and patient care routine. I hope that he can help get your UC under control. I can only imagine how frustrating it has been for you to try and cure yourself.

    I was told at 9 years old I had thyroid cancer. I didn’t even know what a thyroid was. Needless to say I did NOT have thyroid cancer, and just hypothyroidism. The tears that poured out of me were enough to make me never go to that doctor again. I see a specialist every 6 months now. Specialists, like yours, will take more care of you and have better attention to detail.

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    Katie October 4, 2012 at 6:47 pm

    Tina, I really appreciate sharing your struggles with us. I have a chronic illness too and there is honestly a true grieving process. Hang in there and God bless!

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    Erica October 4, 2012 at 7:19 pm

    Im so happy to hear that you finally got some answers from (what sounds like) an amazing doc! :) I bet you are just utterly relieved.

    Just know, I am always sending you good vibes! :D

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    Tina October 4, 2012 at 7:23 pm

    Thank you!! :)

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    Lydia October 4, 2012 at 7:26 pm

    Tina, thank you so much for sharing this and being so open about it. I was recently diagnosed with UC after many years of colonoscopies, appointments, and tests. It has flipped me & my family’s world upside down- but for good reason. My beloved aunt had UC as well and ended up dying soon after of colon cancer. That being said, she didn’t take care of herself at all and she had ALOT of stress in her life. As a Christian, I trust in God to take care of me. As a human though, of course I worry, especially since I just had a baby girl and the thought of possibly missing out on her life someday is heartbreaking (not that UC is a death sentence in any way- but anyone who says they haven’t thought about the potential is probably lying). I have been contemplating going on the SCD and it just seems SO hard. I love food so much and want to be able to, as your doc said, enjoy my life. So I really felt encouraged reading your post. It is awesome to be able to read about this on your blog and feel like I’m in good company and I hope you continue posting updates- they are much, much appreciated by those of us going through the same thing. You will be in my prayers!

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    Katie H. October 4, 2012 at 7:37 pm

    That sounds like fantastic advice for ANYbody!

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    Sarah October 4, 2012 at 7:38 pm

    Hi Tina!
    So happy for you about finding a great doctor. I commend you for always having such a great outlook on things; it is truly inspirational! I am curious about how you intend to readjust your workout schedule based on what your doctor said about intense workouts. Are you planning on going back to doing Crossfit 4 or 5 times a week, or stick with what you have been doing recently? Have a wonderful time in Seattle and thanks for your amazing blog!

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    Tina October 4, 2012 at 7:52 pm

    I’ll probably just keep doing what I’m doing. Rest days make a HUGE difference in my performance at CrossFit! :)

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    Mary October 4, 2012 at 8:28 pm

    Why so much stress in your life? Maybe you really should simply enjoy it and accept you can’t control everything? Would some counseling help your trust issues and get you over the hump? Your diet has changed so much, yet you still struggle, drugs and therapy may actually bridge the gap to where you want to be. Just a thought……….

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    Tina October 4, 2012 at 8:30 pm

    I’m hoping that having NuVal off my plate will help! :)

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    Angela October 4, 2012 at 8:39 pm

    Nice post. Sounds like a great doctor. Actually, eating more lean meat and cutting back on grains based on your blog has helped my own tummy pains, so thanks!!

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    Tina October 4, 2012 at 9:12 pm

    Yay! :)

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    Jenica October 4, 2012 at 8:42 pm

    Sounds like a productive visit with the doctor. Thanks for the tip about coconut aminos!

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    Amy October 4, 2012 at 8:45 pm

    Just wanted to send an e-hug. When your body betrays you when you work so hard, it’s a tough pill to swallow. I know I was super resentful over migraines and IBS when I felt I was doing all I could to properly manage my health. I also remember coming home from doctors crying that no one could help. It did clear itself up, though! I think it was just an aging and chiling out thing. Anyhoo, I wanted to send an e-hug that you find relief. Can you feel me senidng the zen? “Oooooohhhmmmm.” Best, Amy

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    purelymichelle October 4, 2012 at 9:14 pm

    thinking of you Tina!! I agree with the doctor just enjoy what your body can handle!! Great news about CrossFit though ;)

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    Amelia @ Eating Made Easy October 4, 2012 at 9:31 pm

    Finding a doctor you like can revolutionize whatever condition you have, in my opinion. I had a great GI in Boston when I had chronic undiagnosed belly issues –she was so supportive and it sounds like your doctor is too…and funny which is so great. I love him and I don’t even know him!

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    Katie @ Talk Less, Say More October 4, 2012 at 10:03 pm

    This doctor sounds MUCH better. The gastroenterologist I went to when living in NJ was awful and when my celiac test came back negative, told me I just couldn’t control my stress. I was so angry I almost hit him (but decided that wouldn’t help my case). I ended up seeing a nutritionist who helped me realize I wasn’t eating enough protein and too much “roughage.” After paying closer attention to what I was eating and how much of each thing, and ultimately how each thing made me feel and my system is in a MUCH better place. Now keep in mind that I’ve never been diagnosed with colitis but I’ve had major issues most of my life and maybe “unofficially” have it….

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    luv what you do October 4, 2012 at 10:05 pm

    Thanks for sharing all the details. I love that your doctor took the time to listen and stressed the importance of balance! That sounds like a great fit for you. Best of luck with the challenge and enjoy it!

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    Pam October 4, 2012 at 10:21 pm

    So glad you have a better doctor now that listens, has valuable input, AND a sense of humor – BONUS!
    I always cry when I go to the doc. Don’t feel bad about it.
    This guy seems like he can really help you and that is wonderful! He is right, everyone is different and you have to see what foods work best for you and what you can tolerate in small amounts. I think the nut butters in small amounts would be best, their high fat content makes them harder to digest. You can thin out your nut butter with some almond milk (2:1 ratio) to make a nut butter topping/sauce.

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    Tasha October 5, 2012 at 7:38 am

    Your doctor sounds awesome and exactly what you needed. I know that you’re sad about having to be on medication for the long term, but I hope it will end or seriously reduce your flares so that you can continue to lead a healthy, happy lifestyle.

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    Sabrina @ Nutritiously Sweet October 5, 2012 at 8:25 am

    Wow! Sounds likr a lot of good info from the doctor. I get frustrated myself with food due to my darn allergies. Hopefully are bodies can become happy and healthy :)

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    Sara October 5, 2012 at 8:27 am

    I am glad you had a good experience with your new doctor. I am enjoying reading about your journey. It seems you have broken the habit of eating something sweet after dinner (I have the same habit and want to break it!) did you just make the decision and stop or was there a method?

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    Tina October 9, 2012 at 3:56 pm
    Chelsea @ One Healthy Munchkin October 5, 2012 at 8:29 am

    I’m glad you’re liking your new doctor – he sounds like he really listens to you which is great! :)

    I actually just learned about UC in my clinical nutrition class last night and thought of you! We were taught pretty much exactly what your doctor said – that there is no one way that works for everyone. But hopefully with more time and experimenting you’ll figure it out.

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    Mo October 5, 2012 at 8:48 am

    I’m so glad you found a doctor you like! Being able to connect with a doctor is just as important as them being able to treat you!

    I LOVE coconut aminos!! It adds that extra ummpph to any meal!

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    Kelly@BalancedDaily October 5, 2012 at 11:32 am

    Well even if you do end up having to take medication, hopefully it will be a low dosage that will leave you feeling better and get things cleared up. Its always so much better having a doctor who you feel like actually listens to you and genuinely cares. I don’t know if anyone’s ever mentioned the “squatty potty” to you, but I saw it on a random website a few days ago, and this youtube video is worth a watch I think: http://www.youtube.com/watch?v=pYcv6odWfTM&feature=player_embedded

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    Tina October 9, 2012 at 3:52 pm

    Someone else sent me that same link! So interesting (and funny)!

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    Alyssa October 5, 2012 at 12:26 pm

    I’m so glad you got a lot of questions cleared up at the doctor’s! At least now you know you can do more of the things that you want to do. It does stink that you have to stay on medication, but honestly, if it’s going to help then it’s definitely worth it. Cheer up & enjoy your life!

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    Lauren @ The Homeostatic Mindset October 5, 2012 at 8:26 pm

    OMG. I want to cry. This post makes me SO happy for you! I have been struggling with some health issues too, and to find a doctor like this- WOWWOWWOW! It’s so refreshing to hear about the good M.D.’s out there! Big hug! I hope you feel better really soon <3

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    Brit October 5, 2012 at 8:34 pm

    I don’t have UC, but I do have a condition that will require medication and treatment for the rest of my life, and from one to another – it blows! Congrats to you, though, for getting to a new doctor and accepting (or getting towards accepting…) a new life plan, with medicine. It may not be the one you thought it’d be, but it can still be awesome.

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    Sarah October 7, 2012 at 8:18 pm

    I can relate to you on this one. First off I love that your feeling good about this doctor and that he was so up front with you and able to make you laugh. Laughter through this stuff is a good thing :) Honestly you’ve just got to keep a smile, focus on what is good, and ENJOY YOUR LIFE. Live your life. My father has Crohn’s and I see a gastro over at Brigham and Women’s also in Boston… still in testing phases which is stressful but again, keeping positive. I think diet and stress levels are the biggest two components to controlling flare ups. VSL#3 works wonders so I’m happy to see your using it. I hope your feeling better soon and keep that smile lady :))

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    Kelly October 8, 2012 at 5:25 am

    Tina, I have been enjoying your blog and I randomly, however now I see purposefully, stumbled across this particular blog. I myself have struggled with GI issues, however I was never diagnosed with UC, but rather IBS. More relevant to you is my mother who was recently diagnosed with colitis. She was told that from now on, the flares could only be controlled with medications. She was not satisfied with this answer as she prefers not to take medications and went to an accupuncturist. The colitis is now under control and she rather has any flare ups and better yet, medicine free!!! I also had a similar experience with my IBS and treating it with accupuncture-no more discomfort for me! I am a nurse and think there is purpose with Western Medicine, however I ALWAYS recommend accupuncture to everyone and it sounds like you could possibly benefit!! Have a blessed day!

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    DEE November 1, 2012 at 10:37 am

    Regardless of the results of your doctor’s testing for celiac disease, you should all consider that your conditions could be related to gluten. I recommend information you can find at the website which has this article: http://www.weightandwellness.com/resources/articles-and-videos/the-deli-detective/gluten-free-eating/

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    Nina February 14, 2013 at 5:29 pm

    Hi Tina! I just found this post – - I’ve been following your blog for a while, but didn’t see many of your UC-related posts until now. I’ve also been recently diagnosed with UC (like, 2 weeks ago, but I’ve had symptoms for a long time), and I’m so grateful to hear how similar your stories are to mine. When my doctor gave me the diagnosis and walked me through the treatment plan, I immediately dreaded the thought of a life-long pill regimen. I like to think I eat a very healthy, nutritious diet, but am now struggling more with managing the UC-diet thing. I can’t wait to read the rest of your posts to hear more about your success/challenges!

    PS: After a few years of other GI’s telling me I just have heartburn, I now go to the MGH Crohn’s & Colitis Center – - they are AMAZING. I’m so blown away by their level of care. So happy you found a doc you like :)

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