Is there really success with biologics and Jpouch?
I know it works well for people that actually have UC & Crohn’s but it’s hard to find a good number of people that have success with the J pouch. I just finished my third biologic and absolutely no success.
just curious as to how many people on this site take a biologic with success.
Thanks
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Plenty of folks have certainly reported success here, but it’s very hard to reliably estimate the rate of success without a clinical trial. It’s helpful to keep in mind that folks experiencing success often choose not to spend their time reading and posting on a support forum.
It is true that results specific to the j-pouch are difficult to find. Most research goes into treating disease before collectomy and much of the info is either anecdotal or small study groups. It seems like it is sort of an orphan disease. The bulk of IBD sufferers still have their colons. There have been studies that indicate that in the future they may be better able to predict who will respond to any particular treatment. This will be based on DNA analysis. But we aren’t there yet.
For now it is important to know that there myriad variables that play into j-pouch diseases. Frustrating? Yes. Like whack-a-mole. You just have to keep swinging, or give up and ditch the j-pouch. No perfect solution, and definitely no solution that works for most people. I went through 4 biologicals before landing on Remicade, which works for me (for now).
Jan 
Hi,
I started with Entyvio almost a year ago in March. I believe it has helped me. I did have a Dilation in June which also greatly improved my situation. I feel like the Entyvio wears off when I’m about 1-2 weeks away from the next infusion. I used to suffer with pouchitis and I haven’t had a flare of that for over a year!!
All the best to you!
Hello,
I am kind of in the middle of it right now. I have a pouch and took Remicade before it with no success but after they tried it again for Pouchitis and it worked, at least for a while (15 years). I developed psoriasis and had to switch to Stelara due to my levels. This was OK but they went from every 12 weeks to every 4 in short order. My psoriasis is good now but I have been going downhill as of late. I am switching to Skyrizi right now and I really hope that works. It sure has been worse but after 15 fairly good years I just don't have the same mojo I had when I was younger to push through the bad days.
I think you should try. I have not had any bad side effects I know of.
Best of luck!
Pete
Mrs P,
How long did it take for you before Entyvio started to work and pouchitis symptoms were relieved?
I'm a 45 year old male and I've have later developed a chronic pouchitis since my j-pouch surgery in 2010. Now my doctor decided to start Entyvio-threatment as the antibiotics (Cipro, Flagyl) are clearly not working properly anymore. I received the first infusion 4 weeks ago and the second one 2 weeks ago. Now I'm just struggling with antibiotics with only low impact and waiting desperately Entyvio to kick in...
Not any relieve so far from Entyvio and I'm suffering from continuous mild pouchitis: loose stools, mild fatigue, sore muscles and minor increase of body temperature especially when I'm active (walking out slowly with the dog etc.). This has been ongoing since late 2024, thus already several months experience of this current condition.
Having a history with UC since 2006, I know that life really can suck from time to time, but living in an uncertainty without able do life normal life (including daily sports activities etc.) really has affected my wellbeing - also mentally. Having said that, I know for sure what UC and Pouchitis can be in their worst, thus I'm clad that I'm writing this now from the couch of our home, not from a hospital bed...
-Elrond
@Elrond posted:Mrs P,
How long did it take for you before Entyvio started to work and pouchitis symptoms were relieved?
I'm a 45 year old male and I've have later developed a chronic pouchitis since my j-pouch surgery in 2010. Now my doctor decided to start Entyvio-threatment as the antibiotics (Cipro, Flagyl) are clearly not working properly anymore. I received the first infusion 4 weeks ago and the second one 2 weeks ago. Now I'm just struggling with antibiotics with only low impact and waiting desperately Entyvio to kick in...
Not any relieve so far from Entyvio and I'm suffering from continuous mild pouchitis: loose stools, mild fatigue, sore muscles and minor increase of body temperature especially when I'm active (walking out slowly with the dog etc.). This has been ongoing since late 2024, thus already several months experience of this current condition.
Having a history with UC since 2006, I know that life really can suck from time to time, but living in an uncertainty without able do life normal life (including daily sports activities etc.) really has affected my wellbeing - also mentally. Having said that, I know for sure what UC and Pouchitis can be in their worst, thus I'm clad that I'm writing this now from the couch of our home, not from a hospital bed...
-Elrond
Have you ever tried Budesonide? It is a steroid but for the gut, works fabulously. Also have you been checked for C-Diff? You can get it from taking too many anabiotic‘s, that’s what happened to me. it can actually cause loose stools, inflammation.
Good luck I hope everything works out for you!
Yes, no C-Diff as I have been tested a more than a month ago and the result was negative.
I have not heard of Budesonine, but this might be due to the fact that I'm outside US (Nordics) and we might have different medicine doctors prefer... Need to check this too.
I was treated with prednisolone for UC while I still had colon, but it wasn't a winning receipe eithter for the long run.
-Elrond
@Elrond
I really can’t say concerning how long it took for Entyvio to take effect. If I remember correctly, I was not feeling poorly at the time that I started the infusions in March 2024. I had a Dilation in June of 2024. I have not had pouchitis in all of 2024! My most pressing issue is keeping the stricture open. I will continue the Entyvio as I feel like it has to be helping with inflammation.
I wish you all the best
Just be careful of Predinisone. I was on it for far too long and it really messed up my body for a long time. Now years later I have osteoporosis and athritis in my L-1 thru L-4 most likely due to that since it does not run in my family.
It is the gretest and worst drug ever made.
Yes, the use of Predinisone was the original reason why I chose to go j-pouch surgery in the first place; it just was not working for my UC properly anymore. Increased doses did not work too well either, but instead came rather lousy side effects including very small but still existing indications of reduced bone density at the age of only 29.
I fully agree on the comment that "Predinisone is the best and worst drug ever made" as it gives you almost instant relief even you are suffering heavy UC, and even with relatively small doses in the beginning. But the other side of the coin is rather unpleasant if you need to flip the coin down the road as it was in my case...
