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Way ahead

Currently hitting 1yr since surgery (small int, and colon). Picked back up 40pds of the weight I lost pre-surgery. About 4wks ago, started having minor irritation (diarrhea), nothing else, no other typical signs for me. Last colonoscopy showed a little irritation around surgery sight, doc said could just be post surgery remanence, nothing alarming, would monitor. The only relief I've received from the diarrhea has been pepto bismol, but that seems to be a temporary fix. I have concerns that I may be having a start of a reoccurring bout. I'm currently not on any meds, but considering taking something just to add a layer of assistance to stay in remission. I see my GI doc on wed, and plan on having a scope to see what's going on. My doc has previously suggested Remicade (R) or Stellara(S). Not a fan of either because of the side effects. Lower immune system, heart problems, liver damage (long term use). Not sure what else to do. I've changed my diet, and taking pre/probiotics. Does any have experience with any of these drugs? Are there any other suggestions that I should consider?

  1. Hi , thanks so much for writing! I'm sorry that you're feeling the beginnings of another possible flare--that's never fun.

    I recently started on Remicade at the end of September and have been feeling a lot better. I would really recommend discussing your feelings about the side effects with your doctor. In many cases, they list these side effects to be transparent, but they won't be applicable to every person. Also, it's important to talk with your doctor about your risks from side effects vs. the risks from having an ongoing flare. In my case, I ended up with a pulmonary embolism due to being in a flare, which was life threatening. Being on the Remicade will help me prevent those kinds of complications and for me that's more important than the possibility of something else down the road. You may feel differently about this, of course, and that's fair! But what I will say is that biologics have saved the quality of my life in the past six months in a way that I don't believe my diet ever could have.

    I will say that I am more careful about things like COVID or even colds and flus while being on the Remicade due to the lowered immune system. I have not run into any issues, but I've also been quite careful not be around people who are sick with that kind of thing.

    Ultimately, I think it's important to investigate this further with your doctor. If they are recommending the drug, it's usually because they feel the benefits will outweigh your risks and improve your quality of life. From what I've seen, once a doctor recommends biologics, that's where you are in terms of medications. It's unlikely that they'd put you on something else or recommend a different treatment plan, but it never hurts to ask! Hope this helps some! Please feel free to ask any more questions, especially about Remicade. I'm happy to answer! -Eshani (IBD Team Member)

    1. I was on both Remicade and Stelara. Personally, I like Stelara better and it is also more convenient as you administer the medication yourself at home through an injection. With Remicade you have to go to an infusion center and the whole process takes about 3 hours. I had some bad side effects from Remicade but with Stelara I had zero. Problem is after about a year and a half on both, neither drug worked for me but so many others find major success with them.

      One thing I didn't realize entirely is that there are other drugs out there that aren't biologics. After I failed biologics I was put on a JAK Inhibitor called Xeljanz. I am now almost in remission. It is the only drug that has worked for me. It is a pill, I take twice a day and I have zero side effects. Perhaps ask your doctor about it?

      Elizabeth (team member)

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