What do you try when all the biologics fail?

Xeljanz (is not a biologic)

You can live indefinitely with UC, as long as you can handle varying quality of life. There are a lot of alternative treatments out there that have worked for me. I achieved drug free remission several times since my first diagnosis. Yes, it didn't last, but biologics and other modern drugs didn't work on me. So I was surprised to find natural protocols that I did. You should keep searching. Find people in their respected fields who have really good reviews. There are a lot of hacks on both sides (modern medicine and natural medicine). It's about good practitioners and not good "fields".

In 2015 they told me I was for sure going to lose my bowel. It's now 2021 and I'm still here, bowel in tact. Quality of life is sometimes a struggle, but I have made a personal choice to live with it rather than have my organs removed. My grandfather had an ostomy when he was 60 and he was pretty miserable with it. My uncle recently got one because he had his prostate and part of his colon removed, and he is also very unhappy, suffering with post-op depression (5 years in now). In a lot of the support groups I've attended, the ostomates are optimistic and say they wish they got one sooner, but they have to say that because otherwise they won't be able to live with themselves. Nobody is going to say it's hard, or miserable, or ugly, or whatever.

I know one day I may have to get an ostomy, but that day is in the distant future, and I have read so many good and bad stories about surgery that I'll be prepared to go into it losing a quality of life forever. I don't think you should give up your search just because biologics don't work. They have a pretty low success rate, less than 30%. You should broaden your search horizons and look into alternative treatment ideas. There are many communities online that can help you with this. Healingwell is mostly geared toward conventional treatment. So here it's mostly modern medicine or surgery, in their view.

Good luck and best wishes to you!

The_Swan said...
I hope Stelara will work for you! I
I’m curious, can someone on biologics takes other UC medications?

Yes, I've taken biologics with 5-ASA meds and azathioprine (imuran) and even prednisone (short term)
Only the last 2 make you more immunocompromised....

I would guess either wanting to limit immunosuppression or other side effects (prednisone) or other meds just ineffective.

chicken wings, i also did not do well with remicade or entyvio. Stelara was not approved when I was at that stage, so I tried xeljanz instead. Xeljanz is not a biologic but another drug with a comparably strong immunomodulatory effect. It worked for me and I've been in remission for 2 years. We were sure i was going to need surgery (my GI included), and i even had a consult with a surgeon, but knock on wood i didn't get to that point yet. There are a couple of other drugs in the same family as xeljanz (filgitinib, upadacitinib) and they seem to be similarly effective for UC. I cannot influence my disease course with diet or supplements.

I would postulate that the people on this forum tend to have more severe disease, and hence tend to require medical (or surgical) intervention.