I Know Everything and Nothing About Ulcerative Colitis

In honor of World IBD Day today, I wanted to share some advice about what has helped me over the years with anyone who is newly diagnosed or struggling with IBD on a regular basis. Nearly 5 years after my own diagnosis, I still don’t have all the answers, but I’m more than happy to share my experience with the hope of it helping others.

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Find a doctor who you trust and respect – This is always my #1 piece of advice to those who ask me about IBD. About a year after being diagnosed, I switched GI doctors because my first one was a total d-bag. Ugh, he was awful. Now, I’m totally obsessed with my current GI doctor and only have wonderful things to say about him. I respect him so much and trust that he has my best interests in mind. He’s compassionate, caring, and pretty funny, which, of course, helps navigate this crappy disease.

Speaking of trusting my doctor”¦

Inquire about Entyvio – Oooooh, how I fought biologics. I know I’ve said this before, but my poor doctor”¦ and poor Mal. I was so resistant to trying Remicade and tried so many things to avoid it. I was on Remicade for a little over a year, but when it stopped working, my doctor was PUMPED to put me on Entyvio. I still remember many months ago when Entyvio was first approved, he was giddy with excitement, so it was an easy decision for me. For anyone struggling with UC, I highly recommend asking your doctor about Entyvio. It’s gut-specific, so it doesn’t have the same side effects as other biologics and, supposedly, it works better. It’s sometimes tricky to get the drug approved by health insurance because you have to fail another biologic first, but if you’re in this boat, don’t give up after an insurance denial. Keep trying and don’t take no for an answer. You are your best health advocate!

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Try a more plant-based diet – As mentioned above, I know everything and nothing about IBD, but after trying EVERY diet out there, I finally tried a more plant-based diet last Fall and had some improvement in my symptoms. I know everyone is different with regard to diet, so I suggest trying everything and anything to see what works for you, but most plant-based diets are anti-inflammatory, which is essential to calming down the immune system.

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Along the same lines”¦

Avoid Polyunsaturated Fats (PUFAs) in your diet– All of the information out there about dietary fat is so confusing… eat more fat, eat less fat, eat only “healthy” fats, but what are those exactly? I’m still trying to make sense of it all, but, from what I understand, limiting PUFAs, which can increase inflammation, is the best way to get a handle on the omega 3:6 balance. PUFAs are in everything, so Nicole has me watching my daily consumption and limiting them as much as possible. She recommends consuming only 6-12 grams per day, which gives me a little wiggle room for living a “normal life,” so I can eat my favorite foods and dine out every once in a while. (FYI: I use Cron-O-Meter to keep track.) Nicole says it can take months, even years, depending on what you eat, of course, to balance out the omega-6s in your body, so it’s a constant work in progress. More info on PUFAs: Ulcerative Colitis and Dietary PUFAs, Are All PUFA Bad? and The Biggest Dietary Change In American History.

Speaking of Nicole…

Find a GOOD Registered Dietitian to address nutritional deficiencies – This is super important since IBD folks do not absorb nutrients well because of their compromised digestive system, and it’s a bummer than not more traditional doctors recommend it. And what I mean by “good” is a RD who constantly seeks out new information, questions what the media tells them, and doesn’t regurgitate standard recommendations. I’m lucky to have found Nicole. She’s smart. She’s real. She cares a lot. She’s the first health professional that really took the time to understand what was going on with my disease and related symptoms. She asked me a zillion questions during our initial consult, but only because she wanted to get the full scope of what was going on. Now, we’re working to balance my hormones while addressing various related nutritional deficiencies, both of which can affect UC symptoms. (FYI: Nicole had me do a mineral analysis test and the results were super interesting. It was also really affordable unlike a lot of tests out there nowadays.) So, remember those insane night sweats that I used to get? After just 2.5 months of working with Nicole, they are SO MUCH BETTER, almost non-existent. Even though they’re likely related to hormones, there’s a strong link between hormones (progesterone) and IBD inflammation, so I’m hoping my UC symptoms will continue to improve.

Incorporate collagen into your diet – It’s such an easy thing to do (it mixes well into both hot and cold liquids) and helps to promote healthy digestion. I add a serving to my iced coffee every morning as well as a orange juice + seltzer combo in the afternoons/evenings.

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Read 10% Happier – As you probably remember, 10% Happier made a huge impact on my life, and I’ve sung it’s praises on CNC many times in the past. If you have issues with anxiety or sleep, which often go hand-in-hand with IBD, I highly recommend it.

Question of the Day

IBD peeps: What has helped improve your symptoms over the years?

Want to get involved? Consider:

  • Joining your local CCFA chapter to take action throughout the year
  • Spreading the word about #WorldIBDDay on Facebook or Twitter
  • Wearing purple today
  • Donating to help CCFA scientists find better treatments and cures

33 Comments

  1. Thanks for sharing, I also have a good piece of advice Id like to share, look into drug researches. I’m currently in my second (humera vs remicade) and it was easy to get into. You get the drug free, and are given excellent resources to better understand and moniter.

  2. It’s been quite the journey and I give you so much credit for your honesty and being so open about IBD. If there’s one thing I’m sure of, it’s that you have to be proactive and engaged in your personal health and wellbeing.

  3. IBD is a fickle group of diseases, as you and I both unfortunately know. You do what you can, and you do the best that you can. I have actually just started looking into collagen for soft tissue recovery–you are the 4th or 5th person who has mentioned it in the past few months, so I think I might as well try it! From one IBD thriver to another, thank you for raising awareness for what we go through.

  4. Can I ask what has helped with the night sweats? I’m 36 and have been struggling with cold night sweats for the past year. It’s wretched and I have other indicators of hormone issues but my doc just said perimenopause and wrote me off. I’d love to be able to try a dietary tweak!

    1. Jen! I was just reading through these comments and saw yours and couldn’t help but respond. You should look into essential oils! Peppermint applied to the back of the neck is very cooling. Other oils can help too. If you do decide to use them, make sure you use the highest quality oils out there! @Jen:

  5. so I’m coming off of the worst flare I’ve ever had, over a year!! so much this, waiting, wait some more. I’m starting entyvio in a few weeks, are you starting to feel results? I tried the collagen and honestly didn’t feel any difference. I think the hardest part about this condition is knowing that different things work for different people. It’s overwhelming that every book about it sends you off trying something different. Thanks for sharing your story, it’s been very meaningful to me.

    1. I’m so glad to hear you’re starting Entyvio. I saw results almost immediately, but I was in pretty rough shape at the time, so anything was better than what I was dealing with on Remicade. Most people start to see real results during weeks 8-12, which is when I saw it really kick in. I’m having some symptoms now, but I think it’s mostly because I’m due for another infusion soon. I might be a 6-7 weeker instead of 8. We’ll see. As far as the collagen goes, I don’t think it alone will improve your symptoms, but, in the overall scheme of things, I don’t think it hurts to add to your diet since it helps repair the intestinal walls and breaks down food in the stomach for better digestion, which is so important/helpful to us UC people.

  6. I have Rheumatoid Arthritis and live in the Boston area (and just started Remicade!), so I always enjoy these posts of yours- even though our illnesses are quite different.
    I have been thinking about seeing a nutritionist and wonder how it works with Nicole if she is based in Maryland? Do you see her in person? How was she able to run tests?

    Thanks for any info you can provide!

    1. We do everything by phone, email, and mail. We talk on the phone every 3 weeks and communicate by email on a regular basis. The testing was all done by mail, and it was super easy. I definitely recommend reaching out to her!

  7. Thanks for posting. It is ironic it is World lBD day because I have my first appointment today to explore what has been causing my chronic diarrhea, abdominal pain, bleeding, weight loss, hair loss, fatigue, sleep disruption, headaches and chronic low grade fever. Any ideas, LOL. I am not looking forward to this journey but having been a reader for 8 years I have seen that life is still possible even dealing with chronic disease. So Thank YOU! so much.

  8. I don’t suffer from any related diseases, but I still found this post very interesting. It’s very brave of you to open up about this topic to the blog world and share your ups & downs & what you have learned. I’m happy to hear that you have found solutions that are currently working well for you.

  9. Hi Tina,
    I’ve been a reader for years and admire your path to wellness. I have another autoimmune (chronic Lyme), but am always reading on ways to strengthen the gut, as I believe our wellness begins there. So, in addition to a plant heavy diet, Bone broth has been a wonderful healer to me and acupuncture, as I believe we can learn so much from Eastern Medicine. We are all brave in our journeys and sharing knowledge is power.
    I’m sure you’ve helped many. I do think, while it may be difficult for you, that sharing your disease when symptoms flare, in detail (lol!) may help others even more, some may silently suffer and not know what they have! Be well!

  10. Hi Tina! Lovely post!

    I’m a dietitian who works in a very specialized field, so I wanted to add something to your note above. While all dietitians are trained in a similar manner, the field of nutrition is so diverse that not everyone is going to have the same education level on every disease state out there. Finding a dietitian who has experience with IBD would be so important! I work in bariatrics (weight loss surgery) so when people come in who also want education about their kidney disease or food allergies it can be really hard for me to counsel them effectively. I hope people don’t ever feel bad about “shopping around” a bit for a dietitian who has the experience you need!

    Glad to hear you found someone who works well with you 🙂

    1. Definitely! I totally agree. Even some specialized dietitians don’t have the same education levels as others, so it’s super important to shop around and find someone who fits with your needs.

  11. Thank you so much for sharing. I love your UC post as I also have the disease and have struggled with ups and downs for the past 8 years. Once I started eating a more pescetarian diet, I really was able to see improvements. Luckily, I am in remission due to pregnancy, but still take maintenance medication (Lialda) everyday even though it cost $500/month. Hoping that the labor and delivery won’t start a flare. Also hoping that I will be able to get on Rowasa instead of the Lialda after delivery as I have read that Lialda is not great on babies tummies. Will definitely be trying more of your pointers in the future.

  12. Interesting post, and I second the collagen. It has so many benefits to those with IBD, outside of digestion it is also good for your bones which is good for those of us that have been on the dreaded prednisone.

    Entyvio didnt work for me and actually is the one drug that gave me the most side effects. I would feel so awful the next few days. Entyvio was what actually led me to the surgery path! I’m glad it is working for you!

  13. I have never had any problems until right after the holidays and then everything changed. Now I am at the worst point and just starting to figure out what is causing all of these problems. I have followed your blog for many years and really enjoy it but today I really needed this post. I am in the process of food triggers and I saw you do white rice and was wondering if whole wheat is harder to digest? I was also wondering what is your worst trigger food? Thanks so.much for putting your journey out there.

    1. White rice is super easy for most people to digest (myself included), so I eat it quite frequently. Unfortunately, I haven’t been able to nail down too many triggers, except for mayo, which I always have issues with, probably because of the PUFAs.

  14. this is random,but if most of your symptoms went away while you were pregnant, did you try taking extra progesterone? I know a lot of people have hormones that are considered “normal” levels,but once they get a little more feel much better,etc. Just a thought. 🙂

      1. Which doctor is prescribing the progesterone? I have other issues (horrible migraines, nearly daily) that go away when I’m pregnant. I can’t get anyone to prescribe a pre-menopausal woman hormones and it makes me crazy!

        1. It’s not a prescription… just OTC from Amazon. Nicole suggested giving it a whirl for a few months and then weaning off of it.

  15. Interesting about the collagen I will have to do some research.

    I agree about the doctor. I am on GI number 3 who is amaaaazing. It is so important to click so you are team advocating for your health.

    Remicade is a miracle for me. I forgot I was even due for my infusion yesterday that is how good I am feeling which is a blessing. But I am happy that there are other impressive biologics on the pipe line in case it does ever fail. Glad that entyvio has helped you so much!

  16. I think finding the right doctor is so important in any situation. It is so important to find a doctor that aligns with your way of thinking (natural, medication, etc)..

  17. Hi Tina!
    Love this post! I am an RN and nurse practitioner student and just completed a case study about IBD today. Reading your posts has given me a lot of insight into this disease and what patients go through.

    I have been looking into collagen for my arthritis for a little while. So happy to see you post about your supplement today. Is there a particular reason that you use the marine collagen? Thanks!

  18. Hi Tina!
    I apologize if you’ve already addressed this question in a previous post or comment, but do you know anything about the pros/cons of taking collagen powder versus a capsule? I have done a bit of research on this issue, but haven’t arrived at anything definitive. Thanks in advance 🙂

  19. I feel like we have a lot of the same story. Tried every diet and supplement out there for 3 years and last month I finally broke and decided to try Humira-still scared but I need some relief! Started last week, now fingers crossed things start to turn around soon! Thanks for the UC posts, it’s nice to know someone else can understand!

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