I Made It {Remicade Update}

Hi, friends!

We’re getting slammed with snow once again. It started late last night and is rumored to continue into the evening tonight. Boo. Snow. Is it spring yet?

Mal had another snow day today, so he kindly drove me to the T this morning. (I’m a freak about driving in the snow and avoid it at all costs, so I was super thankful.)

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The reason for my early T adventure: I needed to go into the city for a couple of things.

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The first was to drop off my Holter Monitor. I wore it Thursday afternoon through Friday afternoon. It was fine. Nothing exciting to report. I’m not sure when I’ll get the results, but I plan to follow-up with my doctor later this week.

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After that, I made a quick pit-stop at Whole Foods for an iced latte and lunch.

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Approximately half of my salad was Whole Foods bacon. Kidding! Sort of.

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And then I headed to my Remicade appointment. People, I made it 8 weeks between infusions. Hooray!

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About 5 weeks after my third “loading” infusion, I started having a few UC symptoms. In the past, once I started having bleeding/cramping/frequent trips to the bathroom, the symptoms never got better. They’d always progress, which led to trying all the usual drugs that didn’t work and eventually I would end up back on Prednisone. And we all know how that cycle went: Get better, taper down, have another flare, repeat”¦ FOR THREE LONNNNNG YEARS. This time, however, I got better. You hear that?! I got better. The symptoms went away, and I enjoyed 3 more weeks of healthy living. Honestly, I still can’t believe it.

In the days leading up to my appointment today, things did get a little weird on the UC front (I also had zero energy), but nothing compared to what I experienced in the past. Long story short: I made it. Eight weeks of being “healthy.” Holy hell, I frickin’ made it.

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Question of the Day

Tell me one thing you are THANKFUL for today!

Remicade peeps: How do you feel the week before an infusion? Is it normal that I felt kind of blah? How do you feel right after an infusion?

62 Comments

  1. That is awesome you made it 8 weeks! Well, I’m thankful for no snow here 🙂 and super thankful for an awesome volleyball tournament my daughter had this weekend!!

  2. I was totally curious about when you’d post re: Remicade. SO glad to hear you are feeling better after everything you’ve been through, you haven’t given up! I am thankful for my education – allowing me to pursue my dream to become a holistic RD. It’s hard, but worth it.

  3. So glad that you are feeling better!!!

    I was recently diagnosed with IBD (90% sure Crohn’s due to colonoscopy results but I have some symptoms that are more UC getting an upper GI soon for further testing) BUT I am thankful that my new doctor is AMAZING and that I am starting to finally feel better after a 3 month flare of hell.

    1. I’m so sorry to hear about your recent diagnosis. It’s great you have a good doctor. That’s so important. Please don’t hesitate to contact me if you have any questions. ❤️

  4. Glad you’re doing well!
    I can’t believe we’re getting another blizzard in the Boston area; hopefully the T will be running alright this afternoon and I can make it to the gym!

  5. I am thankful for my sweet babes! (as I sit at work reading blogs on a quick break wishing I didnt have to work and could stay home with them instead). Curious, are you in or near Boston? I have a work trip planned 17-20 of March and need recommendations on food and things to do with children (young almost 3 and 1 when we are there).

    So glad you were able to go 8 weeks of healthy living!

  6. Congrats on 8 weeks! I’ve been on Remicade for three years and the most I can still handle is 8 weeks. I think it’s normal to feel kinda icky the week before an infusion. For me, I’ll usually be drained and will sometimes start experiencing Crohn’s symptoms, but they’re pretty mild. Oddly enough, I’m slightly allergic to Remicade so I have to get a round of prednisone in the days leading up to an infusion as well as a super dose of Benadryl right before. This definitely effects how I feel post infusion, which is overall not so hot because of the groggyness and prednisone withdrawal. But on a brighter note, other people I know who get Remicade infusions say they feel energized and wonderful right after an infusion 🙂

  7. So happy for you, glad you didn’t have to restart Prednisone again. I also hate driving in the snow but unfortunately I have to work tonight (I’m a nurse in Boston) so today I’m thankful for my snowblower that will allow me to get out of my driveway 🙂 Stay warm!

  8. That’s great news! I feel so bad that you have to deal with UC but I’m happy you finally found something that seems to be working for you! How long of a commute is it for you into the city? Hopefully the snow didn’t cause you any problems on the subway!

    1. With the snow today, it took 2 hours, but it’s usually a little over an hour. But, if I drive and there’s no traffic, it’s only 30 minutes!

  9. Congratulations — what a relief!

    I’m thankful for the Patriots’ big win last night… and also that the godforsaken winter cold we’ve been passing around the house seems to be on the way out! Fingers crossed!

  10. I am so glad to hear that you are doing better. I am not sure I have ever commented, but I am a frequent reader.

    I am so thankful for my two babies, so thankful that my two yr old with a bit of a speech delay said a full sentence yesterday, and thankful for new friends I’ve made after a recent move

    Wishing you a happy and healthy day 🙂

  11. Congratulations! I’m really happy that you were able to go 8 weeks! Here’s hoping you’re on an upward trend and can make it even longer next time! Fingers crossed it all gets better for you <3

  12. Congratulations! 8 weeks is amazing!

    I’m also in Boston and I’m thankful for the guy who asked if I needed help shoveling out my car. Thank you kind sir!

  13. YES, it is totally normal to start feeling UC symptoms the week or two leading up to your next Remicade. Your body is ready for the next dose. I have been receiving Remicade every 8 weeks for the past 11 years. At this point, my Crohn’s is in remission and I no longer have any symptoms leading up to my infusions. When I first started, I would get a steroid shot before the infusion. That always made me feel like my insides were racing the next day. Now, I only take benadryl and don’t have any issues following the infusion. I’m glad it’s working for you. Isn’t it great to feel good?!

  14. Thankful for Remicade!! I played the same game as you with steroids and didn’t feel “healthy” again untill I started Remicade. Been on it for almost three years now and it was truly a lifesaver. There are sometimes I go 8 weeks feeling fine the whole time and others where a week before I can tell i NEED my Remicade. But I always feel 100% better right afterwards. I would say give it sometime, but some people do get it every 6 or 7 weeks, depends on how you are feeling. Glad your feeling better 🙂

  15. I’m so happy for you! I’m sorry that you have to go through this but it’s great that it’s working for you! I’m thankful that my blood work came back normal! It’s been a long time! Good luck with the snow. ..we got about 14 inches between late yesterday and early today. I’m done with winter!

  16. SO happy to hear that not only did you make it 8 weeks, but that you are doing better! That is just so fantastic, Tina. I really am so happy for you. I am such a huge supporter of Remicade, for personal and obvious reasons, and I am so happy that it is working for you. I will say one thing–don’t be surprised if you find that during marathon training find that you need to move your dosing up just a bit. You very well may not, but don’t hesitate to tell your docs!
    We got a helluva lot of snow yesterday, so I am glad that I got my long run in on Saturday. And luckily, we have a brand new Whole Foods that just opened up a stone’s throw from my apartment! And guess where dinner is coming from tonight? 😀

  17. I mean, when you gotta pay by Weight, yoy might as well get more oftthe good stuff, right? 😉 I’ve been tempted to buy a bowl full of just bacon, cheddar, and sou cream. Lol! But what stopped me was the fact that it’d cost me less than half if i simply made it at home.

  18. I’m am so glad that you are feeling better 🙂 I am thankful for my daughter today. Even though she is teething and super fussy, I don’t know what I would do without her sweet little spirit in my life 🙂 She is one tomorrow and I have no idea where the time has gone!

  19. SO SO happy for you! I’m struggling at the moment-was diagnosed with UC 2 years ago, haven’t really felt anywhere close to normal since- and recently having very new symptoms that don’t coincide with UC so I’m hoping for some tests to come back with new information, maybe a new diagnosis that will help! So glad you found something that works for you, I hope each time it gets even better!

  20. So happy you are feeling okay and making progress! What a great feeling! I’m cheering for you right now! 🙂

    I am happy that I got my cast off and now am in a boot…I’m still non weight bearing for at least 7 more weeks, but let me tell you how good it feels to get a shower, instead of a bath!

    I hope you continue to make strides to getting healthier and feeling better each time!

  21. Glad to hear this Tina, having good health is something people so take for granted. Living with an autoimmune disorder myself, I know how huge it can be when you find something that FINALLY works! Sending lots of positive vibes your way that you continue to feel better!

  22. Yay for you! That’s awesome! Hopefully you keep getting good news like this!

    I’m thankful for the lovely guy from our church who plowed our driveway yesterday. I was stuck in the house for two days with my whole family, and I was getting burnt out. Mondays are usually my day to be alone and recharge, but with the blizzard, we were all stuck. Thankfully, we got out around 2:30 yesterday afternoon, and I got a nice 90 minute reprieve at the gym, where I finished Day 31 of Jamie Eason’s LiveFit trainer, while listening to a book on Audible. Win!

  23. yay!! That’s great to hear! Your lunch looked amaze. In other news, It looks like you took down the Similac post and I just think it’s sad you felt compelled to do so. Women are crazy! Unless you didn’t take it down, and I’m going crazy. but I can’t find it. Happy Friday!! 🙂

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