My First Remicade Appointment + IBD Resources

Mastermind Weekend 1/16

Hey there!

I'm Tina

I’m the owner of Carrots ‘N’ Cake as well as a Certified Nutrition Coach and Functional Diagnostic Nutrition Practitioner (FDN-P). I use macros and functional nutrition to help women find balance within their diets while achieving their body composition goals.

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I had my first Remicade infusion on Monday afternoon and it wasn’t so bad. It was actually kind of enjoyable!

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Ok, so let’s rewind a little. I didn’t tell you guys the whole story the other day. It didn’t want to start the week off on such a negative note on CNC, and I was still waiting to hear back from my doctor, so I only gave you the gist of what was going on.

So, what did I last tell you? Oh, yea, I stopped taking Lialda and weened myself down to 2.5 mg of Prednisone. I was feeling great and my body handled this well for a few days, but then everything came crashing down and got worse and worse and, holy crap, so much worse.

**TMI/real life warning**

Thursday through the weekend, I was going the bathroom more than 20 times a day and seeing straight up blood in the toilet. Guys, seriously, there was so much blood. I’ve never seen anything like it before. In addition to these lovely symptoms, I was also dealing with painful cramping, cold shakes, night sweats (still am), and the high dose of steroids (60mg) was/is making me crazy. Basically, by the time Sunday rolled around, I was a complete mess and so, so, soooo tired.

I talked to my doctor on Sunday, and he said he would do his best to get me in for my first Remicade infusion on Monday. The infusion center at the MGH Crohn’s and Colitis Center was totally booked, but my doctor’s nurse (she is the greatest – I love her) finagled an appointment in a different infusion center on another floor of the hospital. It was amazing. I was so grateful and relieved (I even cried) when she called to tell me that I had an appointment later that afternoon. (It’s funny how my opinion of Remicade changed, huh? I was so resistant to it for years and now I was practically begging for it. I guess when you’re that sick, you’ll do anything to feel well.)

Mal stayed home from school on Monday to watch Quinn, so, as soon as I had an appointment, I headed into the city. I was a little nervous about my first infusion and bummed that Mal couldn’t come with me, but I put on my big girl panties and everything was fine in the end. Actually, things were more than fine.

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The nurse, who gave me my first infusion, was so incredibly nice. Maybe she could tell that I was feeling a little uneasy because she made the whole thing seem like no big deal. She talked my ear off while she took my blood and hooked me up to the IV and, before I knew it, I was reclining back in a comfy chair and holding a TV remote in my hand.

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And it gets better!

The nurse brought me snacks and warm blankets. Helloooo. It was so nice, especially for a new mom! Haha! And Mal and Quinn sent me funny pics while I was there, so the 2.5 hours ended up flying by. (Two hours for the actual infusion + 30 minute to monitor me afterward to make sure nothing bad happened. I didn’t feel any effects of the infusion… just a little tired when it first started, but I felt fine and totally normal by the end.)

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So, yea, my first Remicade infusion went well. I am writing this post on Tuesday afternoon, and I definitely feel better, but it’s tough to know whether it’s the Remicade working or the steroids or a combination of both. I’m still not a 100%, but my doctor said it might take up to 3 infusions to see some real results, so I’m just taking it day-by-day and enjoying the health that I have at this current moment.

I also wanted to share some of the IBD resources that I’ve found helpful over the years. If you’re struggling with IBD or any sort of digestion/GI issues, I hope they help you too!

Question of the Day

Any favorite health resources to share? 

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93 Comments

  1. Feel better. I cannot imagine going through all this… Especially with a needy little one!! (And a needy little furry one!)

  2. As someone with IBD, I know how horrible a flare can be. I’m glad to hear you are feeling better. Thank you so much for being so open and honest about it on your blog. It can be an embarrassing disease, but it is important that we talk about it and share information about it so that more people know what it is about. I appreciate you doing so. PS- I was on the steering committee for a CCFA Take Steps Walk last weekend in CT, and we raised over $40,000 for IBD!

  3. You are so strong!Despite all that is going on with your UC, you continue to remain upbeat and positive – and take care of a little one. Supermom! Sending love your way and hoping that the Remicade works for you. I really like wellnessmama.com for natural remedies. I’ve been using it this year when I start to feel myself getting sick.

  4. Haha you were treated very well by the nurse. i love nice nurses–they’re like the nice motherly side of a docgor(nog to say all doctors are male or harsh). I can’t believe you got food from her? That’s fun, it’s like getting a sticker for being brave enough to go through needles when youre a kid.

  5. I’m so happy you had a positive first experience., without any reactions. I’ve actually found that I look forward to my Remicade appointments as a time to catch up on just “me time” and get things done, or take a nap!

  6. Very, very sorry to hear about all you’re going through right now especially as a new mom. I’m happy that Mal is so supportive and it sounds like you really are in good hands with everything. Really crossing fingers that this goes well for you. I watched my dad go through UC as a kid and it was scary and upsetting. Sending hugs your way!

  7. I hope you never feel obligated to keep the posts positive because you are afraid of posting “negative” content. I find these posts to be especially honest and inspiring. If you choose to keep your health status to yourself, rock on, but don’t be afraid that these kinds of posts turn readers away. I think its an important part of the discussion about health and healthy living, even with (or especially with!) a chronic disease. I wish more people had the courage to talk about these things with the candor that you do. Most importantly, I hope you start to feel better soon!

  8. So sorry to hear about your not feeling well. I hope you get back to your old self soon. I wish you all the best.

  9. I am glad you are feeling a little better! Isn’t it funny how once you become a Mom the strangest things become oddly relaxing and somewhat enjoyable?? I had to have a knee MRI earlier this year and while most people don’t like that, I was like “I just get to lay here and listen to music and do nothing for 45 minutes, yes please!” 🙂

  10. Oh my gosh I can’t imagine going to the bathroom and seeing that. I was that bad only once, and thankfully have only minor flares throughout the year. I really hope this medicine works and you start to feel like your old self!

  11. Hang in there, Tina!! As someone who is also struggling with figuring out a chronic GI problem… you are such an inspiration and your positivity is contagious 🙂

  12. And I thought I went to the bathroom a lot when I was pregnant. Wow. You poor thing. I am so glad to hear the place was nice and the experience was better than anticipated. I hate when my husband can’t go with me to something I am anxious about. How often do you do the treatments?

  13. This is so incredibly helpful, thank you for the great resources! I pray the Remicade works for you! I have a colonoscopy tomorrow to determine if I have infectious colitis or UC, and I’m crossing my fingers for the former. xoxo

  14. I’m so glad you were able to get in for an infusion earlier! I always thought the Remicade infusions were SO relaxing too! The nurses are the best and take such great care of you!! I hope, hope, hope this stuff kicks in ASAP and you are good as new in no time. IBD sucks! It is truly unbelievable how quickly it can knock you on your *ss, isn’t it?! It definitely reminds us to never take good health for granted!

  15. Why did you stop taking Lialda and weening yourself down to 2.5 mg of Prednisone? Did your doctor tell you to? If there was so much blood, did you consider going to the ER? I’m genuinely curious, I would freak out if that was me.

    Will you be taking a break from crossfit/running to let your body heal?

  16. Hope you feel better soon. You are so strong to be a full time mom/wife and stay active and with such a positive outlook. You are an inspiration.

  17. Fingers crossed for you! Glad everything went well the first time. As others have said, you are so positive and that’s the best thing you can be!!

  18. my dad had uc and it eventually developed to khrons diesease. Back when i was a baby about 25 yrs ago the dr told him he only had about 15 yrs to live. he was in and out of the dr and on prednisone for as long as i can remember. About a year ago he developed colon cancer and had to get his colon removed. After he had the surgery his UC/Khrons was completly gone. I asked him why he didnt get the surgery before he developed cancer, (he was scared and didnt want to have his colon removed) he said if he could go back he would have had it removed years ago, even though he has to wear a “bag” now, he said the uc was horrible and alot worse than the “bag”.

  19. you really are so strong and upbeat!! I know we only get a glimpse of things and I think it’s good that you stay positive, but it can be so healing to sometimes just let it all hang out!! You are doing awesome!! I’m so happy your first infusion was a great experience! Good luck with balancing out and getting back to a new normal!

  20. Hey thank you for sharing about everything…I know you are educating me and many others about UC. I know that although many of your readers have not met you IRL, we all care about you and hope for your best health. Rock on, Tina!

  21. I’m so glad that you are finally going to be feeling better and getting some relief. I cannot imagine the terror of not only going 20 times a day, but the blood…you are insanely strong! Keep us updated with your progress, we’re all rooting for you to get better!!

  22. I hope the infusions work and that you feel better soon! I can’t imagine what you’ve been dealing with the past months, years, etc. Bless you!

  23. I am happy to hear you are doing better after the infusion. Stay positive! Things are going to turn around for you. You are such a beautiful person.

  24. I think it’s so wonderful how open and honest you are about this. I know you’ve probably helped countless people which is amazing! My friend suffers from a mild case of colitis and did a marathon and raised a bunch of money with team in training. I think it’s so awesome that people talk about these things and help each other. I hope you start feeling better. You’re such an inspiration, and I’m glad you’re already seeing improvements!

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