Colitis Success Story – Video Q&A with Stephanie about Remicade

The second half of the interview can be viewed in the video below.

Thanks for watching today’s video.

And a MASSIVE big thank you to Stephanie for taking time out of your holiday to talk with me and the world wide iHaveUC site users.

I’ve always thought it’s invaluable for people who are struggling with out of control ulcerative colitis symptoms to hear directly from other UC’ers like yourself.   Excellent GI doctors are definitely out there (check out the GI gastro doctor list page for ideas) but who wouldn’t agree that it’s often better to hear straight from a person like you, who can answer questions with first-hand experience.

Thank you again Stephanie for sharing your experience with Remicade and your UC.  It really was a treat to meet you and hear how your doing, and especially to see your smiling face!  What a great day!

For anybody who has questions related to the video or anything that was discussed regarding Remicade and Ulcerative Colitis, most definitely take a moment and write your comments below in the commenting section.

This is just the beginning of some incredible UC videos, so if you are subscribed to the free newsletter, you’ll be notified when future interviews are published.

Thanks again Stephanie, and wishing the best to the rest of the UC’ers and parents who are managing UC.

Getting Diagnosed with UC is FOR SURE not the end of the world,

Adam Scheuer

 

*PS:  There is an official page with many many individual reviews from UC’ers regarding their experience with Remicade, you can real all those reviews here: iHaveUC Remicade Reviews Master Page

**PSS:  This is a pretty amazing post eh?  do me a favor and share this info with your facebook or twitter friends…or email this to whoever needs to hear about this.  Heck, that’s Stephanie from Chi-Town! :)




Ulcerative Colitis Tips


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Remicade

18 Responses to Colitis Success Story – Video Q&A with Stephanie about Remicade

  1. Bev February 8, 2015 at 3:06 pm #

    That was freaking AWESOME!!!

    What a great idea making this and showing it on the site to help people…thank you Adam and Stephanie! You are a sweet gal!! (Stephanie…lol…not Adam).

    Cheers:)

  2. Brandon February 8, 2015 at 3:14 pm #

    Thank you for posting this story and video. I found it very informative. My question is more personal. I live in the Chicago area and I have lost my GI doctor because of restructuring of the medical community into “groups”. My doctor moved his practice to an area that is know more for gang shootings than great medical advances.Can you (Stephanie) give me a name and possible contact number for your GI in the Chicago Area?

    • Stephanie P
      Stephanie February 9, 2015 at 7:25 am #

      Hi Brandon! Unfortunately, I was diagnosed while living in Spain and then I moved to South Korea… However, a high school friend with UC highly recommended his doctor to me awhile ago… It’s at Northwestern. Dr. Christian Steveoff. 312.695.5620. Nurse Lucy is great, too, he mentioned. Hope this helps!

  3. Brandon February 9, 2015 at 9:21 am #

    Thanks Stephanie. I appreciate the information. I will get in touch with them.

  4. Brent February 9, 2015 at 11:51 am #

    Hi Stephanie,

    Im on Imuran now and after 5 months doesn’t seem to be making a difference so Remicade is the next step. Ive already had the TB test and just have a few more tests to rule out infection in the colon. Did you have any side effects from the Remicade? Nausea? Joint pain? Sleeplessness? Headache?

    Thanks and congrats on your relief from UC!

    • Stephanie P
      Stephanie February 9, 2015 at 1:51 pm #

      Hi Brent!

      Very rarely I get joint pain… but I don’t know if it’s from the year of steroids or the Remicade.

      No sleeplessness, but I’m usually really tired after spending a few hours at the hospital (blood test an hour before the dr. appt., dr. appt., waiting for remicade to be ready, injection etc. all adds up).

      A plus that I forgot to mention in the video is that the pentasa triggered cystic acne for me, which was painful and embarassing… and it has gone away for the most part since starting Remicade.

      It’s a bit painful when the remicade first comes through… but it could be the uncomfortableness of the needle or me just thinking it hurts. It goes away in a few minutes.

      Good luck with the Remicade! I hope you have success :)

      • Beverly February 11, 2015 at 12:48 am #

        Hi Stephanie,
        Thank you so much for sharing your story. Question. I have heard a lot about being very susceptable to infection, having to wear mask, etc, Do you have comment about that?
        Thanks,
        Bev

        • Beverly February 11, 2015 at 12:49 am #

          ps. also because I am around children a lot.

        • Adam
          Adam February 11, 2015 at 8:29 am #

          Hey Beverly,

          August 9, 2014 I actually wrote a posting on the site titled: “Your Chances of Infection from Anti-TNF Treatments”

          Here’s the link to that posting: https://www.ihaveuc.com/your-chances-of-infection-from-anti-tnf-treatments/

          And, you’ll notice within the post a link to the actual research study I referenced which I think you should read as well to get a researched answer to your question. THere are comments below the post I mentioned from Larry, Vicki, and Dalinida which give some first-hand experiences with infections/medical issues quote possibly related. But take a big grain of salt to all the personal comments, absolutely not because they are not valuable, but I think its best to listen, read, and make your own conclusions once you’re informed. And you’ll notice in the remicade reviews page there’s quite a bit of both positive and some negative. I hope this helps,

          -Adam

          • Beverly February 12, 2015 at 7:07 pm #

            Thanks Adam… it does help… I read all the postings and done much research and have decided that I am not going to risk the awful side effects at this time. Going to instead continue on steroids until flare resolves and stick to paleo/and your diet. It has not been easy but I am adjusting to it and trying new recipes. I make chicken soup every week as go to if I’m suddenly ravenous. I’m also on Integra for iron and was told by my special female internist recently that DHEA could be helpful to start to repair from steroids. Im also planning to start Adaptenol when weaning off the steroids.. all bought from compounding pharmacy, all natural. “Pure” is a good brand. I also take their calcium because of bone loss.

            I heard from my doctor too that there is a new LDN therapy that started with research in California for Crones and might work on UC as well. Do you know anything about this?

            Take good care and thanks again for helping me to not feel alone…

          • Adam
            Adam February 12, 2015 at 10:48 pm #

            Hi Beverly,

            Regarding your comment about a new LDN therapy, I’m not sure if you’re simply talking about LDN (Low Dose Naltrexone) or something else.

            Either way, yes, there is quite a bit of info here on the site where people have discussed LDN. And like many other treatments, many people rave about it. If you haven’t read these two pages, I’d encourage you to check them out too:

            A story from Stefan: “Is LDN the New Cure for Colitis”

            https://www.ihaveuc.com/is-ldn-the-new-cure-for-colitis/

            And here is the LDN reviews page:

            https://www.ihaveuc.com/low-dose-naltrexone-ldn-reviews/

  5. John B. February 9, 2015 at 12:19 pm #

    I have UC and Aids/HIV and have been advised by my infectious disease doctor that remicade and humira may not be best for me because it might compromise my immune system. Is there anyone who has had this problem that can share with me what treatment their doctors recommended. My immune system numbers have improved since I was first diagnosed with aids/hiv and my gi doctor is thinking about trying humira or remicade for my UC. Just want to know if any other UC, Aids/Hiv patients had in adverse effects because of using humira or remicade because of their aids/hiv condition.

    Thank You!

  6. Paulette February 9, 2015 at 1:22 pm #

    Thanks so much Adam for your hard work, and Stephanie for sharing your story!
    I just went to see my GI in San Diego Ca ( Dr. Person he’s great!)
    There is a brand new treatment of infusions out called ENTYVIO that my doctor recommended as my next level IF AND WHEN NEEDED.
    I just came off UCERIS (corticosteroid) 6 weeks ago back to just my APRISO ( 6 a day now) and an occasional mesalamine enema.
    Eating habits , can’t say enough…DON’T STICK YOUR HEAD IN THE SAND. EAT RIGHT.
    I think for each one of us there are noticable triggers that can send us into that bathroom fast.!
    Adam, that yogurt , probiotics and eating right is definitely a recipe for success.
    Maybe, just maybe I can rest here in the glow of a semi remission with less side effects!
    Anyway, I’m reading up on this new infusion.
    Has anyone started it yet?

  7. Lynn February 9, 2015 at 2:10 pm #

    Hi Paulette –

    My 20 year old son has tried the new infusion drug Entyvio. It did not work for him. Chris on the ihaveuc website has had success. Check out that thread. I wish you the best. Seeing a loved one suffer is very difficult. Some good days and some bad but we just keep pushing forward in hopes of finding remission.

  8. Donna D
    Donna February 9, 2015 at 4:26 pm #

    I am on Remicade. But, after my 3rd infusion (8 wks. from last one) I had a flare. I got a fecal test for Cdiff and a colonoscopy. Neg. for Cdiff and the colonoscopy showed moderate to severe inflamation. So, now I have to do a Prometheus test one day before my next infusion to see if I’ve developed anti-bodies to the drug. I really hope not because my UC came with severe joint pain and I have been pain free for the 1st time in 6 years!! Anyone else have joint pain? Please keep your fingers crossed I test this week! Signed, Hopeful :)

  9. Greg March 17, 2015 at 6:13 am #

    Thank you for doing this video Adam & Stephanie.
    Stephanie, I have been on Remicade for 6 months now. I have seen improvement, but definitely not symptom free. You mention that you finally realized that diet is important. Other bloggers also mention diet. Can you share what diet you follow? My GI doc believes diet is not important with UC. In the past, I have tried gluten-free and the SCD diet…each for a month…without much difference being noted. Maybe I didn’t try long enough? Stephanie, since we are both using Remicade, I would be especially interested in your diet…since you have had a very successful result. Thank you!!

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