Crohns & Colitis

I was diagnosed with Crohns about 8 years ago, they changed that diagnosis in 2023 to Ulcerative Colitis. In March 2023 I had a total colectomy which left me with an Ostomy. I am now what they call, an Ostomate.

Ostomy Awareness day 2023

The Ostomy has given me a new freedom. I feel strong and healthy for the first time in years.

I put this surgery off for years. I wish I had done it sooner but I wanted to exhaust every option and all the while I was just running my body into the ground with prolonged use of high dose prednisone and injecting biologics (Humira, Remicaid, Entyvio, Stelara).

I convinced myself that I was making progress, that I was feeling better, but I was in denial. I was really good at hiding how sick I was feeling. It’s easy to deceive others, when you’re lying to yourself.

After consulting with Mayo, even if another medication like Rinvoq or Skyrizi would sustain me…. my cancer risk and the toll the prolonged biologic plus steroid usage was taking it’s toll physically. It’s just not worth it.

We decided to do the surgery I had been putting off for over 6 years.

Coloplast Mio Midi

I’m often asked what pouch system I use. I love the Coloplast click system as I can change pouches leaving the base in place. I can have a larger pouch for night, smaller ones for the day and going out. 99% of the time I’m using this SenSura Mio Midi Click. https://products.coloplast.us/coloplast/ostomy-care/sensura-mio/sensura-mio-click/sensura-mio-click-closed-pouch/

Helpful Links

I have found Facebook group The Real Ostomy Support Group to be the best Ostomy related Facebook group with a great community of Ostomates where you can interact and get all kinds of practical information.
Check out the Crohns & Colitis Foundation for information clinical trials, managing the disease and getting involved locally.
I have tried Ostomy products from Hollister, Convatec, and Coloplast. I believe that Coloplast has the highest quality and selection of modern products that not only work well, but look good as well. https://www.coloplast.us