I hear a lot of good reviews about stelara, I do not have any experience with it but I hear great things about it.

I have heard before that Remicade is often the first choice for untreated pouchitis because it has more data on treating pouchitis. Has your doctor ever mentioned Remicade in the past???

I was on Remicade before my j pouch surgery and had what my Dr thought was a reaction. I found out later that I had Rocky Mountain Spotted Fever but didn't have symptoms. When I would get a Remicade infusion, it would lower my immune system then I would get the RMSF symptoms.  I was treated for RMSF and never had any problems.  I never took another treatment of Remicade because I had my surgery for j pouch.  So I think my Dr is a little concern for me to do Remicade again.  Plus Stelara is one infusion treatment and then you get shots.

@RondaC posted:

I was on Remicade before my j pouch surgery and had what my Dr thought was a reaction. I found out later that I had Rocky Mountain Spotted Fever but didn't have symptoms. When I would get a Remicade infusion, it would lower my immune system then I would get the RMSF symptoms.  I was treated for RMSF and never had any problems.  I never took another treatment of Remicade because I had my surgery for j pouch.  So I think my Dr is a little concern for me to do Remicade again.  Plus Stelara is one infusion treatment and then you get shots.

Oh wow! You have been through a lot I see!!! Yeah, I hear good things about Stelara, I think its worth a shot (pun intended) lol.

Let me know how it goes

@RondaC If you type Stelara in the search bar, there’s quite a number of threads discussing taking this med for pouchitis.
Hopefully you can find the answers your looking for there.
Pouchitis is not fun, I’m going through it right now trying to figure out what I’m gonna do.
Good luck to you!

Rhonda: A read a comment from a guy on my survey today, he told me his J-pouch popped from doing strenuous exercise too, he did not go septic thank God but he is doing good now. I hear a lot about strenuous exercise damaging a lot of J-pouchers.

I am so happy to hear you both are okay

MODERATOR NOTE: This is misleading. Pouch injury from exercise is actually rather rare. The above reference does not note what the conditions of the pouch were before this happened.

Thankfully,  my exercise did not pop my j pouch.  I did develop 2 hernias that was because the j pouch surgery weakened my abdominal wall.  I was doing some exercises that included some  heavy weights.  Since my hernia surgery. I have learned to do smaller weight but more repetitions.

I have been on Humira, Entyvio and Stelara. I feel that Stelara worked best for me.   Pouch exams didn’t show reduction of inflammation with Entyvio and I was switched to Stelara.  Pouch exams showed reduction of inflammation while on Stelara.

I was on Entyvio when I had a colon and it didn't work for me.  Hopefully,  Stelara will help with pouchitis.

Have any of you had side effects from Stelara or Entyvio?

My doc was just discussing with me today, these 2 are a possibility for my pouchitis, I’m deathly afraid of side effects.

Thanks

@RondaC posted:

Thankfully,  my exercise did not pop my j pouch.  I did develop 2 hernias that was because the j pouch surgery weakened my abdominal wall.  I was doing some exercises that included some  heavy weights.  Since my hernia surgery. I have learned to do smaller weight but more repetitions.

I am very happy to hear that

I didn't have side effects from Remicare or Entyvio.

After sporadic bouts of pouchitis, my GI doc put me on Entyvio in 2017.  It has cleared up the inflammation and ulceration in my pouch, and I have been good ever since. An infusion every 8 weeks.