My First Remicade Appointment + IBD Resources

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? 

93 Comments

  1. Are you still able to nurse with the steroids and Remicade? I hope you feel better, it sounds like you are going thru a really rough patch. With all that blood loss, you must be low on iron?
    Best wishes to you, I really enjoy your blog, and that you share so much of your life.

  2. Ugh, I’m so sorry you have been dealing with those debilitating bathroom issues. 🙁 Thank you so much for being brave and sharing your story. I know that many readers, including me, really appreciate your honesty. I don’t have UC or digestive issues myself, but I saw a friend “like” a post on FB a few days ago and I went back and forth on whether or not to share it with you. I didn’t want you to think I was preaching at you or anything. I just wanted to share the blog that she “liked” since it seemed like it could be really helpful to you. I read a lot of it and it seems to be full of really great stuff. I really hope the Remicade helps you and you continue feeling better and better!! The blog is http://empoweredsustenance.com/about-2/

  3. Do you read the blog Ali on the Run? It seems like she has dealt with a lot of the same symptoms and struggles with finding the right meds too. You guys should be friends! 🙂

  4. Yes! Yes! Yes! The digestion sessions is what it’s all about!!!! I’m so happy for you that you found this! I truly believe that this will do the trick for you:) This is what the GAPS book tells you about & gives you a roadmap for the diet to heal your gut. Woot! Woot!(p.s. I’m a total nerd when it comes to health!). Good luck!

  5. So glad to hear that your first Remicaid treatment went well! Thanks for sharing the “real life” details. Hope this gets you feeling better soon!

    BTW – totally got the hibby-jibbies when I saw the pic of your arm and the IV. I am such a wimp! Can’t look at IVs in my own arm let alone someone else’s (also can’t look at other people’s bruises and I have a weird thing about seeing the palm side of the wrist – all make me squirm). Maybe it’s because they always have trouble finding a good vein for an IV. And to think I wanted to be a doctor!

  6. So sorry that you have been feeling so awful! Two of my relatives are on Remicade infusions and they are doing great, so I sincerely hope that the infusions help you as well! Sending lots of get well wishes your way!

  7. Hi, sorry you are so sick. I am a fellow UC sufferer here. Do you mind telling why you’d want to wean yourself off Lialda? It is one of the safest medications used to treat UC and also protective against colon cancer in UC patients.
    Have you considered Imuran (azathioprine)? I have good experience with that.

    I think basically any treatment is better than cortisone long term. Corticosteroids are only a short time solution for acute flares. Hopefully remicade + steroids will stop your flare soon! Take care of yourself!

  8. wow – so sorry to hear how you felt over the weekend but glad that you are starting to feel better now. Thank you for being so honest in your posts! Positive vibes that you continue to recover and feel better. Hugs.

  9. So sorry to hear that you were so sick this weekend, but so glad that things are getting a little better now. How often do you need to go in for Remicade treatments while you’re going that route? So nice that you got to feel so well taken care of for a bit. Those little things really do help a whole lot!

  10. Tina,
    I have been following your blog for about 2 years now. Just wanted to say feel better and I really hope the Remicade eases all of your symptoms. Love your blog and love that you share real life situations! Also loved when you interviewed my boyfriend, Marcus. I snapped a photo of your post about him and sent it to him and said, “DID YOU KNOW I FOLLOW THIS GIRL!”. He didn’t and laughed 🙂 Keep it up!

  11. Tina,
    Thank you so so much for posting those. I haven’t gone through all of them yet, but I read a list of things that make IBS worse, including a ton of high fiber foods (which is basically what my doctors have told me to overload on, and it has not been working), so it’s good to know somewhere to start. Since this spring I’ve been dealing with something horrendous, GI wise. I haven’t been diagnosed with anything, but nothing normal works to fix my issues, and it’s scary and frustrating. Went to the doctor, he was no help at all (will go to another, it’s just exhausting). This whole week I’ve been barely able to do anything, (TMI) because my symptoms have been so painful, and it just makes me want to cry.
    Anyway my point is that I really appreciate you sharing your struggles on here– I don’t have the same symptoms as you but knowing that someone else is going through colon misery is really helpful.
    I turn 25 in a few days, and before this spring I never had any issues. It’s bizarre to me that it could just come out of nowhere, but there you go.
    This is just me rambling now, but thank you, again. Maybe it’s not hopeless and I can feel sort of normal again! 🙂

  12. My favorite health resource is a podcast called “Dishing Up Nutrition”. I’ve been listening to this group of women nutritionists for over eight years. Every week they have a different topic on their podcasts. A few weeks ago, I think they had one on Crohn’s Disease. Also, they have a website http://www.weightandwellness.com
    I’ve learned so much from this show, and I have a nutritionist there I consult with on a regular basis. Love it.

  13. Hi Tina –
    I don’t usually comment, but I had to shoot you a note saying how much I appreciate you being open about such a private matter. I have had chronic GI issues since my late teens (about 15 years now) and have yet to figure out what the real problem is. Hearing about your experiences is so helpful and reassuring. I’m sure I’m not the only one who feels this way. I know how horrible and scary symptoms like yours can be and I truly hope you start feeling better soon and find a lasting treatment!

  14. So sorry that you are going through this makes my IBS seems like a cakewalk!! So glad for your positive attitude. Love the picture of “the boys”. Here’s to hoping that you feel better SOON!!

  15. I’m so sorry you are going through this. I have a 3 mo old baby, and I recently began a flare of my chronic inflammatory arthritis (basically atypical RA). I began reading your blog during my pregnancy as it was fun to read along with someone who was just a few months ahead of me. But as someone who didn’t know your history, I was surprised when you started writing about your medical issues. Thank you so much for sharing this with your readers. I have an excellent support system, but no one else in my personal life suffers from an autoimmune disorder (thankfully). So, it has really been helpful to read this. Makes me feel so much less alone. Also, I’m sure many others have asked you this, but I’m curious if you will continue nursing. It is none of my business, obviously, but I’m now at a point where I have to decide whether to go back on a TNF med and if I do, whether to continue nursing. I haven’t even seen my rheumi yet, but I’d love to hear how you came to your decision. Anyway, I’m keeping my fingers crossed that the Remicade works wonders for you!

  16. Found your blog doing some unscientific research into Remicade (which my doc wants to start) and I feel like your story could be mine – resistant to using meds, trying everything under the sun for holistic healing with no luck, and trying to keep up with crazy workouts while my body is falling apart. Thanks for sharing your story – it resonated!

  17. Have you tried following a paleo/autoimmune diet protocol and eliminating grains? My dad has UC and it has done WONDERS for him. He sticks to lean meats, veggies, healthy fats and as much as he misses croissants/cookies/bagels/bread etc. he just gets instant stomach upset (and blood, like you said!) when he eats that stuff. I’m sure you’ve considered it but I recommend giving it another shot 🙂

  18. Thank you! Thank you! Thank you! This is so true to my life right now. I was so hesitant to try Remicade. But reading your blog has helped make my decision a little easier. The medication list goes on and on … the Prednisone was the worst for me. I only lasted about a month on that and I had to ween off because it was going to put me and my husband into divorce court! The lialda, uceris ($$$) …
    It has been bad since August but it is just getting so much worse. It is hard for others to see how difficult this is to go through. My job is giving me such a tough time because in the morning it is rough – which in turn makes me late to work. I am just recently experiencing stomach pain and the chills …
    I just had my blood work updated and received the all clear to begin.
    I am hoping I have as much success as you did!
    Thank you again for sharing the tips and your personal experience!

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