biologics and pouchiitis

Ronda,

I was on continuous rotating antibiotics for pouchitis for around 25 years. I finally got off them when I went on Remicade. While antibiotics are effective in clearing up symptoms they are less effective in clearing up inflammation than the biologics. That has been my experience. You need to keep getting scoped every year and your body will tell you how long you can stay on antibiotics. I was able to do it for a very long time by rotating between different antibiotics. But long term the inflammation is really just held in check and in my case Remicade represented a very significant upgrade in treatment from antibiotics. Good luck.

One other thing- J pouch surgery isn't a cure. It does eliminate UC in your colon but it's not a cure for autoimmune disorder. In many cases it manifests as pouchitis and/or Crohn's but, ideally, can be more manageable if it does. No question in my mind that pouchitis is more manageable than UC (for me) so I traded up in autoimmune diseases. That made the surgery worth it. This should be your mindset, because in most cases J pouch inflammation should be more manageable than colonic inflammation. It's a much smaller surface area to manage.

I am sorry RondaC about your whole story. I was on Mesalamine too before my colon came out too, it stopped working for me too.

I am sorry you have to take biologics against your wishes but I would much rather you take Stelara than get a ileostomy bag again or your pouchitis get worse. Life is not always fair unfortunately and all of the surgeries that we get are not cures either unfortunately. Its better for us to accept the things we cannot change, I find that makes life a lot easier.

I hope Stelara will work, if not, I am sure there are MANY other options as well, but I strongly recommend to give Stelara a chance and have faith in it; at least the shots are only every 8 weeks, that is the bright side.

I just want you to get better, that is all that matters.

If I were you, I would take a sheet of paper and grab a pen, I would write down the positive things about taking Stelara and I would read it out loud every time I get depressed about taking Stelara. Example: pouchitis might get better, reduce bathroom trips, avoiding other treatments, no ileostomy, easier than Remicade, etc- I am sure there are a billion positive things you can write down. Writing positive things and saying it out loud definitely helps me reduce stress.

I hope you feel better and I hope the medicine works, Keep us updated and good luck dear

Lauren Of Emerald City Thank you so much for those encouraging words. I will take the Stelara and hope things get better. I am getting to a point like when I have UC that I don't want to go out and do things plus constantly on the lookout for a bathroom. It was so nice to be able to do that. I am hoping I get my first infusion very soon.

@RondaC posted:

Lauren Of Emerald City Thank you so much for those encouraging words. I will take the Stelara and hope things get better. I am getting to a point like when I have UC that I don't want to go out and do things plus constantly on the lookout for a bathroom. It was so nice to be able to do that. I am hoping I get my first infusion very soon.

You are welcome And I totally understand where you are coming from!  Things will get better

I have 14-20bms a day so I am always looking for the bathrooms in public lol, that is probably never going to change for me though, I just roll with it.

Thank-you for everything you shared with me in the past as well. All of your stories/comments about exercising among other things have helped me with my pouch.

Let us know how things go with your first infusion

I have been on antibiotics for pouchitis for 17 years now. The rotation of three different ones works for me. Last year my gastro put me on Humira because things were getting a bit more interesting. I have not been able to get off the antibiotics, though. Anything that keeps life semi normal is ok with me.