Pouchitis Treatment and Recovery Experiences

Replies
5
Views
587
Morrison
Jan 04, 2024 11:55 pm

Has anyone had this condition? If so, were you able to have it clear? What type of treatment did you receive?

Axl
Jan 05, 2024 10:35 am

Hello M

I'm guessing you have a J pouch or a disconnected J pouch. I had pouchitis and cuffitis constantly, so I went back to the ileo. I still get small bouts of it. I started with 2 mg cortisone suppositories and 1 mg mesalazine suppositories. After it settled down, I just do the mesalazine now and then for a maintenance type of thing. When the pouch was functioning, I discovered there are some who live on antibiotics to try and tame it, rotating between two different types, but this didn't work for me.

Gray Logo for MeetAnOstoMate

past member

After I got my ostomy I found this site and got a lifetime membership. I have had so much help from the core members, things that even the wound care nurses didn't know. If you haven't been through this journey you don't know - only the people that have experienced this first hand truly understand what your going through. The support is enormously helpful getting through this. Afterwards when you start to learn how to deal with this new normal you can begin to help others.  ...mtnman. 

IGGIE
Jan 05, 2024 12:07 pm

G-Day Morrison,

Yes, I had a J-Pouch for 18 years, and I also got Pouchitis and Cuffitis, so like Axl, I went back to the Ileostomy and never looked back. I wish I had gone for the Ileostomy right from the start.

Regards, IGGIE

Justbreathe
Jan 06, 2024 1:33 pm

Axl and Iggie - thank you for sharing this bit of experience (although it's not the first time you have shared), but I think if ever I was to go for a reversal and that was my choice, I'd stick with my ileostomy, which has been basically complication-free for 3+ years now. I did, in the past, reject the idea of reversal for various reasons, but mainly I embrace a pain-free existence. I ended up with my feature (stoma) as a result of a cyst on the outside of my colon (but attached to my colon, ovary, and appendix as it grew without my knowledge or any discomfort or signs). Fortunately for me, it was non-malignant, but removal was necessary followed by a “temporary” stoma. This is just a recap I have already written about for any newcomers to this site who may just now be joining MAO - which has been an enormous help in my journey. jb

IGGIE
Jan 06, 2024 2:22 pm

When I repeat something, it's for the new person asking a question that hasn't seen the previous notes. Regards, IGGIE

 

My Ostomy Journey: April | Hollister

Play
Justbreathe
Jan 06, 2024 7:57 pm

Yes, and that's a good thing - there are newcomers every day, and repeats help us all to remember things. 🤗