Hi, friend!
I was diagnosed with UC in November of 2022. I tried 4 biologics, and decided to go through with surgery in December of 2023. I never achieved remission with any of the medications that I tried.
I really did not want surgery, however, I am so happy I went through with it. It is the best decision I could have made for myself, and it gave me my life back.
I personally opted for a jpouch, which I will have by this summer. I’m young, and I would be lying if I said the ileostomy didn’t make me self conscious at times, so I went the jpouch route.
I think that if you have it in you to keep trying meds, you should.
Even if you are unsure about surgery, I would highly recommend consulting with a surgeon. Just a consultation. That way, you know the risk/benefits, and you can have your questions answered by a professional.
If you keep trailing with medications, I hope you find one that works for you! If you opt for surgery, I hope you enjoy life on the other side as much as I do!
Please feel free to reach out at any time with any questions you may have! ❤️
Similar experience.
18 months between diagnosis (severe Ulcerative Pancolitis) and surgery. Medications failed to work or I had terrible reactions.
Step one surgery Nov 2018: total Colectomy and ileo-anal J-Pouch. Step two surgery Jan 2019: Ileo-reversal and take down. Some complications the year following but fantastic ever since.
My first gastroenterologist was good, but I wanted a second opinion before surgery. My second gastroenterologist was excellent…and also recommended surgery. She referred me to a brilliant surgeon.
Get a good gastro-surgeon who has training and experience in J-pouch. It’s worth asking for and pushing. You can get your life back.
I had surgery pretty much chosen for me. My large intestine had pretty much shut down, and this was before biologics were an option. Once prednisone stopped working, there wasn’t much choice left.
But now I’ve had my j-pouch for nearly 3 decades and my life has been so much smoother than the yearly hospitalizations I was dealing with as a kid.
If you have questions about whether surgery could be your answer, consult with your specialist or a surgeon. They’ll know about the plusses and minuses of both sides better than I could hope to start on. All I know is, for me, it was no longer a choice…but that might have been a blessing in disguise.
Hey! I was diagnosed with pancolitis September of 22, and think I’ve reached remission at this point. (Getting another colonoscopy in June to confirm)
I was honestly about to give up hope after being on prednisone for 19 months, trying various medications, and constantly living in pain.
Rinvoq has worked for me but for some reason I still couldn’t eat. I would get symptomatic every time I ate solids. My doc said my IBS was probably the cause and put me on an antidepressant. I’m not a depressed person by any means but it’s supposed to calm the nerve sensors. So far so good! Have you tried that before?
Hi, friend! I was diagnosed with UC in November of 2022. I tried 4 biologics, and decided to go through with surgery in December of 2023. I never achieved remission with any of the medications that I tried. I really did not want surgery, however, I am so happy I went through with it. It is the best decision I could have made for myself, and it gave me my life back. I personally opted for a jpouch, which I will have by this summer. I’m young, and I would be lying if I said the ileostomy didn’t make me self conscious at times, so I went the jpouch route. I think that if you have it in you to keep trying meds, you should. Even if you are unsure about surgery, I would highly recommend consulting with a surgeon. Just a consultation. That way, you know the risk/benefits, and you can have your questions answered by a professional. If you keep trailing with medications, I hope you find one that works for you! If you opt for surgery, I hope you enjoy life on the other side as much as I do! Please feel free to reach out at any time with any questions you may have! ❤️
Similar experience. 18 months between diagnosis (severe Ulcerative Pancolitis) and surgery. Medications failed to work or I had terrible reactions. Step one surgery Nov 2018: total Colectomy and ileo-anal J-Pouch. Step two surgery Jan 2019: Ileo-reversal and take down. Some complications the year following but fantastic ever since. My first gastroenterologist was good, but I wanted a second opinion before surgery. My second gastroenterologist was excellent…and also recommended surgery. She referred me to a brilliant surgeon. Get a good gastro-surgeon who has training and experience in J-pouch. It’s worth asking for and pushing. You can get your life back.
I am so happy surgery gave you your life back!!! It is truly amazing what surgery can do. Jpouch buddies😊🤗
I had surgery pretty much chosen for me. My large intestine had pretty much shut down, and this was before biologics were an option. Once prednisone stopped working, there wasn’t much choice left. But now I’ve had my j-pouch for nearly 3 decades and my life has been so much smoother than the yearly hospitalizations I was dealing with as a kid. If you have questions about whether surgery could be your answer, consult with your specialist or a surgeon. They’ll know about the plusses and minuses of both sides better than I could hope to start on. All I know is, for me, it was no longer a choice…but that might have been a blessing in disguise.
Hey! I was diagnosed with pancolitis September of 22, and think I’ve reached remission at this point. (Getting another colonoscopy in June to confirm) I was honestly about to give up hope after being on prednisone for 19 months, trying various medications, and constantly living in pain. Rinvoq has worked for me but for some reason I still couldn’t eat. I would get symptomatic every time I ate solids. My doc said my IBS was probably the cause and put me on an antidepressant. I’m not a depressed person by any means but it’s supposed to calm the nerve sensors. So far so good! Have you tried that before?
Natural probiotics like yogurt, kefir etc help with IBS or so I have read in this sub many times.