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I do not have PSC. Even though I had multiple surgeries, I never did require a colostomy. There was enough healthy colon to resect each time. I did go through a long 6 month period with lots of complications, and needed three other resections (one due to a leak caused by a surgical staple that lifted), another because of an obstruction, and then a third because of a perforation that was caused by a complication from the surgery to fix the bowel obstruction. I think some of the problems were caused by the general weakened stage of my body because of the brief chemo and then just random things that came up (fistula, etc). The perforation was probably the hardest to deal with because I became septic and spent 5 weeks in the hospital, part of it on a ventilator. I was put on TPN and not allowed any water or anything by mouth (even ice) for almost 8 weeks. So while my road wasn’t easy, my surgeon did find my colon to be healthy enough to resect immediately. He was very skilled.

Ive been on Entyvio for two years, and they just increased my infusion dosage to every four weeks (I will start that soon). I also take Mesalamine. My doctor is also looking into Zyposio (sp?)

I’ve met with several GI/IBD specialists over the last two years, (and also consulted with them with my cancer diagnosis pre surgery) but their philosophy with long term IBD is always to remove the colon. They have been recommending that since 2019. In 2022, I met with their colon rectal surgeon so he could give an opinion. He did a colonoscopy, and said that he did recommend Entyvio (I wasn’t on it yet), but that he would not perform a surgery to remove the colon based on what he saw (lots of healthy tissue)

I had a colonoscopy in January and had two small ulcers and mild inflammation. They decided to increase the Entyvio and see if that can help eliminate more.

I’m continuing to advocate for what feels right to me. I’m an extremely active (workout daily) and healthy person and want to live my life in the way I want.

My last appt with Mayo left me in tears because I feel like there isn’t a one size fits all approach to health care. The doctor did admit that the incidence of colon cancer in UC is less than they used to think, and that there are others like me who may not require removal of colon.

Please message me if you have more questions

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Replies to "I do not have PSC. Even though I had multiple surgeries, I never did require a..."

Oh my God you had a supper rough course after surgery but sounds like you’re coming out on top. Good thing you advocated for yourself and now have healthy tissue not requiring more surgery/removal! Who said your tissue was healthy enough to avoid removal-Mayo or other? Why were you in tears then?

Thank you again, you’re giving me hope. I’m hoping they will let me start Entyvio, think outside the box, and stop telling me I’m playing with fire.
Did you research or start an anti-inflammatory diet? I’ve started it and hope it helps.
Or look into acupuncture/eastern medicine? I have emailed an Eastern trained doctor who studied western medicine as well in China. When western medicine fails me, I’m hoping eastern medicine won’t.
I feel if this conditions related
to inflammation I need to take every measure to calm the storm inside.
I know I'm grasping at straws here since I have longstanding UC/PSC, but I’m not willing to live with a ostomy.
My 2nd opinion Dr at UOC hasn’t even seen my slides but due to longstanding UC/PSC recommends total colectomy. I just want them to think outside the box and try a different approach.
Thank you for your support!