Remicade Infusion #2 + Everything I Tried to Fix Myself {Ulcerative Colitis}

Good morning!

I had my second Remicade infusion yesterday morning, but before I headed into the city for my appointment, I had a nice morning with my boys.

I ate breakfast with Mal.

SAMSUNG CSC

And then we headed outside with Quinn and Murphy for a family walk.

photo 3 (22) (800x600)

It was a chilly morning, so I broke out our winter gear for the season.

photo 4 (13) (800x600)

We walked for about 30 minutes and then Mal drove me to the T, so I could head into the city.

photo 2 (5) (800x600)

photo 1 (14) (600x800)

I arrived at Charles/MGH with about 15 minutes to spare before my appointment, so I stopped into the nearby Whole Foods for an iced soy latte and second breakfast.

photo 4 (7) (800x600)

Second breakfast = the best.

photo 1 (2) (800x600)

I worked non-stop during my nearly 3-hour infusion. (I’m feeling a lot better, and I’m down to 20mg of Prednisone!) Mal sent me cute baby and pugs pics while I was at the hospital.

photo 3 (21) (452x800)photo 2 (452x800)

When I got home, we snapped Quinn’s 5-month pic. I can’t believe how big he is getting!

SAMSUNG CSC

Then I snacked on a whole wheat wrap with almond butter, pumpkin cream cheese, and banana slices inside. Oh, yes, it was delicious!

SAMSUNG CSC

I also drank a big mug of Sugar Cookie Sleigh Ride, which is my favorite holiday tea.

sugar_cookie_sleigh_ride_

So, I’ve been meaning to put all of this info in one place for awhile now. I get so many questions about UC stuff, and I thought it would be helpful to anyone struggling with IBD or who was recently diagnosed. I definitely don’t have all of the answers, but I am more than willing to share my experiences and offer any sort of support that I can. IBD is a terribly frustrating disease and if there is anything I can do to make it easier for someone who is dealing with it, I am more than happy to help.

Here’s a quick history and background of my disease: I was diagnosed with Ulcerative Colitis in June 2011 right before I turned 31 years old. It came out of nowhere and no one in my family has IBD or autoimmune diseases. I guess I am just lucky. Here’s a little timeline of how my disease has played out over the years.

Below I have listed all of the different things I’ve tried over the years to get my symptoms and flares under control. Besides Prednisone and pregnancy, nothing I did ever made me 100% healthy. I always had some sort of symptoms. However, I don’t regret trying any of these things one bit. I needed to try them. I needed to know if they would work or not. Unfortunately, things didn’t work out for me, but they might for someone else. I’ve heard so many successful stories of IBD patients managing their disease with things other than drugs, so I know it’s possible, and I want to make others aware of what’s out there. (Obviously, I am not a doctor, so please talk to yours before trying any of these things.)

Clearly, remission without “hardcore” (immunosuppressor) drugs wasn’t in the cards for me, so, with that said, here’s a list of everything I tried before Remicade. Various blog posts are linked below, so check them out for additional information. And, of course, feel free to contact me if you have specific questions. I’ll do my best to answer them.

DRUGS

  • Lialda
  • Rowasa
  • Asacol
  • Apriso
  • Cortifoam
  • Hydrocortisone
  • Uceris <— I paid $900 for it and it didn’t work at all!
  • Canasa
  • Prednisone <— The only drug that worked.

DIET CHANGES

SUPPLEMENTS

  • Probiotics (VSL3, VSL3 DS, Natren Healthy Trinity)
  • Tumero Active
  • Resvero Active
  • Super Oxicell
  • Nitric Balance
  • L-glutamine
  • Ultra D (high dose of vitamin D)
  • Gastro ULC
  • Parastonil
  • i-flora
  • Glutathione Recycler
  • Gabatone
  • Wheat grass
  • Aloe vera

TESTS

  • Food sensitivities
  • GI Effects Microbial Ecology Profile (stool test)
  • Intestinal Antigenic Permeability Screen
  • Nutritional Response Therapy

STOPPING HIGH-INTENSITY EXERCISE

ACUPUNCTURE

Chicco TRE Giveaway

Thanks to everyone who entered to win a high-performance TRE jogging stroller from Chicco! Here is your winner:

Angela

The one hand fold sounds so convenient! I’m due with my first little one in December and I need all the help I can get. :)

Congrats, Angela! Please email me at tina@carrotsncake.com with your full name, mailing address, and stroller color preference.

Questions of the Day

Have you ever struggled with a chronic disease? What ultimately put you into remission/made you healthy? 

76 Comments

  1. I know you’ve tried so many things, but I just wanted to make sure she was on your radar as someone to either talk to, reach out to, or just read about her story. Lauren Geertsen, a Nutritional Therapy Practitioner, writes at the blog Empowered Sustenance. Her story is incredible (healing from severe ulcerative colitis) and she’s full of knowledge. Anyway, just wanted to point her out in case you hadn’t heard of her before, in case it could help at all.

  2. I struggle with migraine. I’ve tried so many things over the years and every time I think I’ve got them beat I’ll get one. It’s so frustrating ’cause I take meds every day and it seems like the minute I start thinking about working with my doc to taper off I’ll get 2 or 3 in a row.

  3. Ugh, what a long haul you’ve had! I’m sure you’ve had such ups and downs. I can understand that emotional roller coaster a bit as I sustained three injuries in the span of nine months (I always had 2 simultaneously), two of which I sought treatment for for a long time and nothing I did seemed to help. At one point my orthopedist didn’t even know what was wrong with me with one of the injuries. That’s a scary feeling, especially when the disability the injury caused kept getting worse. And of course the mental part of it can make it just as bad.
    I also had a few years where I would get migraines at least once a week. At one point it was so bad that I would miss most days of the week at work. Taking a leave of absence was scary, but allowed me to focus on my health and get back on track. Now I only get bad migraines a few times a year.
    And the big doozie-I had anorexia when I was in middle school. I was hospitalized twice and ended up seeing all kinds of people-nutritionists, doctors, therapists-over the course of a few years. It’s a weird thing to have because you can’t take medicine for it and be better (though antidepressents/anti-anxiety meds can help take the edge off) and can be a lifelong struggle.
    Hang in there! I’m glad you’ve found something that’s working!

  4. Hi Tina! I’m so sorry to hear that you’ve been struggling lately. My husband and my brother have Crohn’s so I am very familiar with what you are going through and I know it is so tough. I’m curious – has your doctor ever recommended Humira? Both my husband and brother are on it and are doing very well. My husband was on Remicaid which worked for him too for a while, but Humira is definitely more convenient (just a shot as opposed to several hours at the doctor). Also – have you become involved with CCFA at all? It’s a great organization that does lots of wonderful work for Crohn’s and Colitis research. Hope you feel better soon. xoxoxo,
    Leah

  5. Hi Tina,
    Thank you for your blog, it is comforting knowing there are other people out there struggling with the same thing. I was diagnosed with UC about 15 years ago. Managed it with Lialda and enemas, however these 3 months I’ve been in the longest flare. Finally started Remicade but not sure if it’s working. I am at a higher dose (10mg/kg) but still not symptom free. I still have urgency and frequent bowl movements. How did you know Remicade wasn’t right for you? When did you make the switch to Entiviyo? Are you still on Entiviyo?

Leave a Reply

Your email address will not be published. Required fields are marked *