My Dr. wants me to go on Entivio to treat my Pouchitis as my pouch is in constant ulceration and he is worried about me losing it. Have many of you had success treating pouchitis with Entivio? He said that there are not a lot of studies out there for treating Pouchitis with Entivio and Stelara. And is there a preference between Stelara and Entivio if there are successes? Thank you in advance.
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Unfortunately no success for me with both meds (for chronic pouchitis).
My doctor has consistently told me
Entyvio is the second option if Remicade ever fails, which it hasn't. So he thinks Entyvio is the better choice as between those 2 for the same issues you have.
Entyvio didn't work for my chronic pouchitis however Humira did (and still does!). It's nice to know that there are different options to fall back on. Best of luck to you.
I've been on Entyvio for a couple of years now, and so far it has worked well for me along with Imuran and Budesonide. Lord willing that continues. Tried Humira before this and it didn't work for me. As it has already been said, each of us are different. I'd give it a try and see how well it works for you.
Yea I tried Humira and Remicade when I had my colon and was battling UC and neither worked for the UC. Man, one of the reasons I had my colon removed was so I would not be on one of these strong medicines and now here I am. I also have been getting blockages once a year right below where my temp stoma was. In November they did a big surgery and cut out about 10" of my small intestine to rid the scar tissue that they thought was closing (the surgeon did it twice at the time of the surgery because she did not like the looks of it after she was almost done and so she redid it again). And then in July I had 3 blockages. So dealing with two issues, one up high with the closing intestine and then my pouch being ulcerated. Lots of fun
. Thanks for the responses and I am open to hearing from more of you. Thanks so much!
Has anyone tried Physillum Powder? It absorbs all loose bowels, and gives you something to hang onto.. I’ve had a functioning Jpouch for 36 years. Physillum powder changed my life.
I took Entivio when I had UC pre-Jpouch surgery. I did not work for me. Stelara did not work on my pouchitis. I am currently on Rinvoq. So far, so good
I have been on Entyvio since 2016- it's life changing. I do have pouchitis and cuffitis. This is the best I have been, ever. I am 51 yrs old and was diagnosed at 17.
Remicade- I was allergic.
Humira, worked for 4 yrs.
Stelera did not work for me.
Good luck!
kkitchens
I left a post on What Advice do you need? You can read my background info.
It was recommended to start infusion of Stelara and canceled my infusioin appointment due to fear and doubt yesterday. Thinking that reverse surgery may be healthier , with my 24 yr. old j pouch , the risks of this drug are far too scary. I would appreciate your experience with stelara, have not connected with anyone who has taken it?
Thank you so much,
Sheila
What is Rinvoq and how is it administered? How long have you been on it?
It is a biologic, It is a once a day tablet you take orally. I have been on it for about a month & a half. I like it because it isn't an IV or an injection. I haven't had any side effects from it. YET . Hopefully, I will not have any.
Hi..I was on entyvio 2 yrs. Every 4 weeks treatments. After 2 yrs..quit working. (J pouch 34 yrs). Suffered with pouch ulcers, blockages, pouchitis, complete raw rectum) etc..Dr now wants to start stelara this Thursday! Went to surgeon for 2nd opinion to remove j pouch & ho perm ileostomy & he agreed but said he would support my decision to go the stelara route. However, he did feel it wouldn't work cause pouch is in an ischemic state also. So I am trying stelara for. Scared but going to try. I wish you the best also!
Hi Member
In response, I appreciate you sharing your history with j pouch for 34 years and so hopeful . I also appreciate your support and thank you so much for sending this message. It means so much when there are selective souls reaching out with so many choices to make that are critical to share our similar stories.
I wish you a hopeful outcome with your Stelara route and it would be good to keep in touch with our experiences.
Many thanks,
Sheila
Hi Sheila..its been a struggle for the last 12 yrs. From c diff to pouch ulcers & then my dr shen leaving Cleveland clinic. Starting all over eith new team of Drs is hard. Just had tea with a friend this a.m. she gave me a ? To ponder. " are you ( meaning me) just trying to buy time & avoiding the fact that " eventually " your j pouch is failing & you will have the surgery "?.. of course..I am!!! I've been struggling with this decision to go on another biological drug..especially since it's side effects are more extreme than entyvio for a cancer patient..but I promised myself if this stelara doesn't work..I will have the surgery.
I wish you too all the best.
Yes, I have an appointment to discuss with my surgeon, the future if surgery is needed and the Stelara does not work well, with remission or unable to tolerate it. it seems we are both on the same page. I plan to start the infusion some time soon beginning in early November. Thanks for your response, and will get back with my experience as I can. Sheila
Hello..I started my stelara infusion today. We shall see! Next injection 8 weeks out in Dec before Christmas. Just praying it will help. But I've also made up my mind to stay positive & if stelara works..great..& if not then no more postponing I'll choose the surgery. Wishing you all well.
Did you have any side effects and if so what were they? Hope you are doing well, haven't heard yet for appointment with at home care health. Thanks so much for writing, please keep in touch. Sheila
Hi..today I woke up feeling achy & very tired. I was surprised that I felt this way so soon after the infusion. Took Tylenol. I'll see how tomorrow goes.
I was on Stelara for almost two years (J-pouch - 1995) and just stopped two months ago. Not sure on how well it worked. My pouch was scoped 30 days ago and it showed some pouchitis. So I stopped. I know I only paid $5 per injection every 8 weeks but the cost billed to my insurance for that drug was outrageous!!! After speaking to my GI and it wasn’t doing what it was supposed to do 100%, I said no more. Side effects were not worth the risk after all that time.
Thank you Hazel for your experience with Stelara.
Have not started the Stelara . Knowing you had side effects it is good you stopped. I had my pouch since 1998, glad to know you have had a lasting
j pouch . I now have Crohn's and gastro doctor recommends to keep inflammation from spreading, Stelara may help with remission. What were your side effects if you don't mind sharing?
I just had an excellent appointment on line with my Nutritionist , with Ph.d who is an authority with inflammation. She has recommended a list of supplements and also guided me over the years on Fod map diet. I have cut out dairy products, no red meat and keep a simple diet of grains, protein and green vegetables most organic.(. also a food journal. )
Keeping active with exercise and good sleep practices have been my motto. Thank you for your response, if I can be of any help please don't hesitate , Hazel.
Sheila
KT,
Hang in there !! I tried Entyvio with no success. My Doc has put me on Rinvoq. Suggest it to your doc. I have had chronic pouchitis right off the rip. Thankfully, no ulcers(yet anyway.) However, my pouch is enlongated and there is massive bacteria buildup. Lots of swelling, pain. I also take 250mg x2 per day of Cipro. Every three weeks take a three day regimen of Flagyl. I hope this helps. I hope this helps anyone reading this ! Keep good thought !! Answers are out there !
-T
