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.
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!
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.
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.
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: