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Hi supporter of J-pouch,

Seek anyone who is having success with Stelera,  I will be anticipating my first

infusion soon , and have j-pouch for many years. Did you have any side effects

just want to connect with anyone experiencing this new medication for me.

thank you so much,,

Sheila

scohen3015@gmail.com

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Hi Sheila, I’m a j-poucher for 33 years and developed pouchitis 3 years ago. I’ve been on Stelara for 2 years now and it’s been great. I’ve had a significant reduction in symptoms, I feel fantastic and have regained my energy, my last scope showed that the inflammation is vastly improved, and I’ve experienced no side effects whatsoever. The only annoyances have been periodic issues with prescription drug coverage for this ridiculously expensive medication and having to inject myself every other month. (I hate needles, but I’m used to it by now, and the needle is tiny anyway and I barely feel it.) I understand from my gastroenterologist that Stelara is well tolerated and effective. Hopefully your experience is similar! Wishing you all the best with your treatment.

Last edited by Portia

Portia

  You are a blessing to me and I appreciate so much hearing  your positive remarks and experience.  I also have my pouch since  surgery of 1998.  I  thank you so much for answering to give me HOPE that I have been yearning from someone like you , who are now  on this medication Stelera.  All i have read on lilne gives me such fear.  Now that you have answered I will keep in touch with you.  I live in Lititz, Pennsylvania and it feels so hopeful that you answered from on line.  May you continue with good energy and good health.  My email is scohen3015@gmail.com if you want to keep in touch.

My exceptional thanks,

Sheila Cohen

I use Stelera as well. It’s one injection every 12 weeks. My last scope was great and the only issue I have is that it gets red and itchy the first day or two I inject it. But if I inject it at night right before bed, I don’t notice and am asleep by the time it gets itchy. It also helps with my arthritis too.

Have you tried any other injections/infusions? I’ve tried Entyvio, Humira, Cimzia, and Remicaide prior. Good luck!

I took Stelara for several years for my Chrons, this after a severe adverse reaction to Remicade.  It worked great for a couple years, then dosing frequency had to be increased to double (monthly 90 mg) when efficacy diminished.  Eventually just stopped taking when the drug lost any effectiveness.  In consult with my GI, the risk of continued usage outweighed the nominal gains I got from continued treatment.  For now, I am back on Cipro to control symptoms.  Will probably begin Skirizi in the near future.  I can't complain about Stelara - I do not recall significant side effects.  Giving myself my 1st injection was a bit scary, but it definitely gets easy over time!

Darren thanks so much for your experience with Stelera.  At my age of 76 soon to be 77 I really want to safe time and not experiment with other drugs.  I have acute inflammation and have put off taking any drugs with my j-pouch since 1998.  This year will be my first exploration with a biologic.  I had 7 years of ulcerative colitis with meds before the surgeries .  Thank you for sharing , it means so much.May you keep healthy and enrich yourself daily.  I do art work to satisfy my needs for creativity and do alot of home cooking. Less is best! Rarely go to restaurants.

I count on the feedback from these generous members to share.  Keep up with your health.  My diet and exercise have played a tremendous role, Mediterranean diet and recently Dr. Weill has a good diet  shown on his pyramid of foods.  I had open heart surgery with double by-pass, and it will be one year in May.  Much less complicated than Crohn's. 

Wish everyone success to your Health,

Sheila

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