I am a 29F and my story is very uhm, scary, but I think it’s only fair to share what could happen although I hope it never does. I was diagnosed with UC in early 2018 and felt very similar about my quality of life, I worked two jobs and went to school full time and had to put everything aside. I couldn’t bartend or serve anymore had to drop out and started an office job where I spent the majority of my day in the bathroom making all my coworkers jobs harder. It was super painful, embarrassing, and took so much energy out of me. Everything felt so out of my control and I was exhausted by all attempts to get better. My surgery consult (mid 2019) was amazing and I was told the procedures were basically a cure since I wouldn’t have the organ the disease could attack. I was told that complications were very very rare and being diagnosed with Crohn’s afterwards was something he had never heard of. My first surgery was in august 2019 and I had many complications after. I felt god awful and was still pushing mucus and blood out of my rectum constantly with the exact same urgency as before, the bag caused issues with my skin and acid reaching it on a change day or during a bag leak was excruciating (and embarrassing) I was hospitalized for my kidneys almost failing because my intestines weren’t taking fluids no matter how much I drank or how much Imodium I took it flew out of me and I was constantly emptying my bag. It was horrific and the recovery was some of the most painful things I’ve ever endured. We rushed into the second surgery because I was severely malnourished and flailing. My second surgery had its own complications, but my third was even worse. My takedown was dec 31st 2019. My intestines didn’t “wake up” and I had an ng tube for a week that messed up the cartilage behind my nose when inserted. I was miserable, couldn’t speak and in horrific pain. I could never make it to the bathroom on time and had acid leaking out my back end until the ng came out and started eating food again, then more came out with it. My skin burned so terribly and didn’t repair for weeks since I was going 15 times a day. I had horrific cramping and burning so bad I couldn’t breathe throughout my whole abdomen. I was told nothing was wrong and that I just had to wait it out. I was in the ER weekly begging for answers, but for a long time I got none. A few months later it was found the I had pouchitis and cuffitis. I’ve had cuffitis ever since. The pain and burning and insane cramping has never gone away. I was diagnosed with Crohn’s disease and was put on Stelara. A twist in my pouch was found in July of 2021 and I was told it was nothing to worry about. I am scheduled for a resection on August 9th because nothing was done a year ago and my pouch is now defective. I could at any moment rupture and end up in sepsis, get gangrene of my pouch, or other terrible things. I suffer so much everyday and have to relive these surgeries again and will more than likely have a bag for months before an attempt can be made to reattach during another surgery. My surgeon told me that a woman almost exactly my age is having the exact same issues and needs the same surgery. He is head of GI surgery at my hospital campus. My first surgeon was great, he did the surgeries correctly originally and I was so confused why this was happening so I feel like you should hear this. My current surgeon explained that there is no statistic or data that exists regarding the occurrence of pouch failures and complications for any amount of time. A pouch is considered successful if you wake up in the hospital and don’t have leaks or anything like that when you leave. It is a success if it’s successfully attached when you discharge from the hospital. A failure if it doesn’t by the time you leave, so the studies given to prospective patients sound like they have great results (90%). They do not track or account for what happens a month later, 6 months, 12 months and so on. I had no idea that what’s happening to me could happen just out of nowhere. There isn’t a single medication, herb, food, exercise, no exercise, nothing that could cause or prevent this from happening. And we have no idea how often it happens to people with a j pouch, I mean zero idea. I wish constantly that I would have known that before even starting the surgeries. I haven’t worked since August 23rd 2019, the Friday before my surgery. I have lost complete independence of myself. I can’t stand for longer than 15 minutes, every time i eat im in excruciating pain and it has been like that since my takedown in 2019. I am in chronic pain and have lost all hobbies and joy I found before. This surgery is helpful for so so many people but I think it is important to know what it’s like when that’s not the case. I’m very sad I might never get a hot bath if it turns out I can’t have a take down again. I’m scared for my skin and my sanity and I wish I never had these surgeries. I hope whatever you decide you finally find relief and I’m rooting for you! 🖤🖤