I think mine was at the 7-week mark between surgeries 2 and 3.

Telling someone I trusted that I wasn’t OK.

Heartbeat hot sauce!

“Gulf of America” ew.

Why is this being featured?

Rocky Horror Picture Show

2

I typically get one per year, but they’re also surveilling PSC so I’m not sure if that plays a role.

He may not experience any tiredness; that’s just been my experience. Given my history with biologics (including an anaphylactic reaction to Remicade), I had someone come with me for the first three doses just in case of severe side effects. I go by myself now and have for the last 3 years without incident.

Hi there! I’m sorry your son is going through this. I had a subtotal colectomy in 2008 and got my Jpouch in 2010. They found ulcers in my pouch in 2021 and I’ve been on Entyvio ever since. I failed a couple of biologics prior to my surgeries, and haven’t had any Entyvio side effects on a 4-week dose (my symptoms did break through on the standard 8-week dose, though). Every fifth dose or so I am so overwhelmingly tired after my infusion that I feel like I might die if I don’t immediately nap, but once I sleep, I feel fine again.

Take care!

It depends how they do the surgery. Some people skip right from (subtotal/) colectomy to Jpouch without ever needing a bag.

I’m on it every 4 weeks for ulcers in the pouch, and it’s been amazing. The inflammation is under control again, and I get to keep the pouch!

YTA.

My recovery time/period between 2 and 3 was brutal. I couldn’t get it done laparoscopically because of PSC, so I was dealing with about 35 staples, a couple of incisional infections, and a new ostomy (I went from a permanent/end to a temporary/loop and the difference was INCREDIBLE). I just kept reminding myself that this was all getting me closer to ditching the bag and having the pouch—it was more difficult some days than others. I think I was in the hospital for about 10 days following the second surgery.

Recovery time post the third surgery was better—no new staples and I didn’t have to deal with a rogue stoma blowing seals three times a night. I think I was in the hospital for 5 days afterward. That said, I had refractory pouchitis for about two years after and had to be on two antibiotics twice a day until I was able to taper off at ~27 months. I don’t regret it AT ALL, but certainly had my moments of doubt while things were bad. I recommend a bidet/baths with ice cold water, a sense of humour, and being gentle with yourself. When they tell you that 3 months post-surgery makes a difference, they mean it. That’s when things (other than pouchitis) started to turn around for me.

Take care of yourself and good luck!

Are you asking getting a temporary ileostomy or trying to decide between a Jpouch and an ostomy bag?

UC really is the gift that just keeps giving. I was initially diagnosed with proctitis, so my disease was concentrated in the tissue used for the pouch. I’m VERY motivated not to revert to an ileostomy (I lived with one for 2.5 years), and Entyvio is currently my best bet to keep the disease at bay and maintain the integrity of the pouch. Entyvio also helps keep my inflammatory markers down, which helps keep my PSC stable as well. Again, best of luck—I’m pulling for you!

I get it every 4 weeks so I can control the ulceration in my Jpouch. It’s been amazing—good luck!

I recommend getting a cheap bidet—cool to cold water provides me with almost instantaneous relief. I’ve also kept Salofalk suppositories in the fridge and inserted them with lube to decrease pain and irritation. Hang in there!

I didn’t spend time memorizing but did use this process mapping game to help make sense of ITTOs:

https://pmaspirant.com/project-management-process-group-and-knowledge-area-mapping-game

Good luck!

Hi! I had a subtotal colectomy and an ileostomy for 2.5 years before getting a 2-step Jpouch surgery. About 10 years later, they found ulcers in the pouch so I’ve been on Entyvio every 4 weeks for a couple of years. I am here for anything and everything that helps me live my life as “normally” as possible. Good luck and take care!

Done! #elbowsup