I’ve been on antibiotics daily for about 13 years, with Cipro and Flagyl together for about 6 years. I’ve had a very good result, though some folks have troublesome side effects. If you get good results with one medication at a time that’s better than two medications, since you’ll have less risk of side effects. If you can find several antibiotics that work it can be beneficial to rotate those antibiotics every few weeks, to reduce the risk of any of them becoming ineffective over time. And some folks switch to a biologic, either if all antibiotics stop working or their doctor gets uncomfortable with the long-term antibiotic use.

Good luck!

I am similar to what your going through. Although I can not take antibiotics any longer for pouchitis. Have allergies to both flagyl & cipro. Also too many antibiotics cause me C-Diff

my doc wants me to try either Remicade or Humira but I’m so afraid of side effects from these drugs, I seem to get all side effects from almost all meds I take.
I also wonder how these drugs will do with the covid vaccine.

if I had the choice, I’d take the antibiotics

good luck with what you decide

I tried Humira about 5 years ago.  They found that the drug wasn't getting into my bloodstream.  After blaming it on antibodies, they gave up on it after 5-6 months of the self-injections. 

A couple of years later I tried Remicade for about 6 months.  I never noticed any improvement so that was discontinued, too.  Back in early November I started Entyvio.  I haven't seen any improvement yet.  So my doctor has just switched me over to infusions every 4 weeks instead of every 8 weeks.   

About 5-6 years ago, I basically said that my condition is what it is and I have learned to live with it.  The main reason I tried Humira, Remicade, and now Entyvio is because the doctors I have been seeing since 2016 have recommended that I try them.  I played the devil's advocate each time and said "I have learned to live with my condition, I don't have a lot of confidence in the treatments, and I don't really want to take on any increased risk from short-term - and especially long-term potential side effects of these medications."  Each time the doctors responses were (a) it would be better to have a better QOL, (b) it's not a wise idea to continue on with a diseased / inflamed colon, and (c) the potential side effects are very limited and unlikely to do any harm.  So I felt that I had nothing to lose, heeded their advice and have tried them.  I am referring to two different GIs, one in AB and one in MB. 

Anyway, that's my story / two cents on the biologics.  I have a feeling that if Entyvio fails to improve my condition, it could very well be the last stop on the train for me.   I am not sure there is another drug that would be worth trying.  Not at this point in time, anyway...

@capper posted:

I tried Humira about 5 years ago.  They found that the drug wasn't getting into my bloodstream.  After blaming it on antibodies, they gave up on it after 5-6 months of the self-injections.

A couple of years later I tried Remicade for about 6 months.  I never noticed any improvement so that was discontinued, too.  Back in early November I started Entyvio.  I haven't seen any improvement yet.  So my doctor has just switched me over to infusions every 4 weeks instead of every 8 weeks.   

About 5-6 years ago, I basically said that my condition is what it is and I have learned to live with it.  The main reason I tried Humira, Remicade, and now Entyvio is because the doctors I have been seeing since 2016 have recommended that I try them.  I played the devil's advocate each time and said "I have learned to live with my condition, I don't have a lot of confidence in the treatments, and I don't really want to take on any increased risk from short-term - and especially long-term potential side effects of these medications."  Each time the doctors responses were (a) it would be better to have a better QOL, (b) it's not a wise idea to continue on with a diseased / inflamed colon, and (c) the potential side effects are very limited and unlikely to do any harm.  So I felt that I had nothing to lose, heeded their advice and have tried them.  I am referring to two different GIs, one in AB and one in MB.

Anyway, that's my story / two cents on the biologics.  I have a feeling that if Entyvio fails to improve my condition, it could very well be the last stop on the train for me.   I am not sure there is another drug that would be worth trying.  Not at this point in time, anyway...

Whatever happens, I have faith in you, you will get through this

Well, this is a tough one. As you probably have noticed advice and experience varies widely. One person’s experience does not predict another’s. The advice can be helpful or not.

That said, my take on the whole biologic issue has been that they are worth trying and the trend now is to use them earlier with IBD in general to avoid surgery when possible because they are that safe and effective. Most of the adverse effects are reversible when discontinued, and the lymphoma risk is quite slight (remember, you can get lymphoma or any other cancer without taking biologics).

After many, many years of biologics, I am happy to report that I personally have not suffered any adverse effects. I have been on Enbrel, Humira, Simponi, Cimzia, and Remicade. All were for enteropathic arthritis, but my GI recommended Remicade once I developed chronic pouchitis. Specifically, he wanted me to not take antibiotics on a chronic basis, as they have their own risk profile. I was doing OK on antibiotics, but was willing to change. Entyvio is the only one I have not tried. It was going to be next if Remicade failed.

I have had numerous vaccines while on biologics, and specifically Remicade. I had my first Covid vaccine 2 weeks ago. No problems. I had surgery to remove my adrenal gland and cardiac ablation while on biologics. I have other comorbidities, like diabetes, mild chronic kidney disease, cardiac arrhythmias and enteropathic arthritis, but that does not stop me from treating my pouchitis.

My best advice is to figure out which risks you are willing to live with. Try not to be so fearful of potential side effects that you are unable to fully consider your options. Plus, it is OK to decide to go with an option now and change your mind later. But, just know, that with Remicade, once you start it you generally cannot resume it after you have stopped it for a prolonged period. That is when antibodies tend to form against it.

I hope you figure out what your best path to wellness is soon. Good luck!

Jan

thanks so much everyone....I'm probably switching from Entyvio to Remicade soon. My Doc said she's seen plenty of patients take Remicade for a while and then go off for a while after they get better. So we will see......