Radiation and UC

Hi guys, my UC is currently in at least symptomatic remission on 30 mg of Rinvoq. I started it Nov of 2022, with a bit of a flare that put me back on 30mg from the 15mg after loading dose.

I am needing radiation for a spinal cord tumor in the the L5 S1 area. Has anyone with UC had radiation that could affect the bowels?

Thank you Old Hat. I have a growing list of questions to ask at my first appointment with a radiologist at Vanderbilt on Friday. Unfortunately, though my tumor is not malignant, it is not slow growing. I was told it was to intertwined with the nerves for surgery, but I have to do something because I am symptomatic. Difficulty walking, some numbness, pain, ect. Do you know if having IBD increases the risk of gut radiation side affects like strictures?

Thank you.....

That is so kind of you to check back in! I had honestly forgotten that I had posted, but with good reason, I suppose. I had brain surgery in May for what was regrowth of my original tumor, so everything was put on hold with the L5-S1 tumor for a while. My ferritin was really low before the brain surgery, so I thought I must be flaring, though I really wasn't having symptoms. My GI rushed a scope in, and I actually am in clinical remission for the first time! I have stayed symptom free despite have two breaks this year for a month each when I had surgery.
I had a second surgery in October for the L5-S1 tumor. Unfortunately, it was very sticky to the nerves, so they were only able to get 40% of the tumor. I am not a candidate for surgery again, so I don't know what will be needed down the road. I go back in April for scans to compare to the ones from this month because they will be able to see better if it is stable or not. I had a csf leak that kind of made a mess of things on the post surgical scans. Anyways, Vanderbilt doesn't have proton therapy, (not sure if that is what you are calling pencil beam, Old Hat?) and my current insurance doesn't cover Emory where they do have it. I may do a consult down there, though. I asked my oncology radiologist if he had the option, would he fight my insurance for my situation. He said it is in a location that would be covered, and he said if my UC was flaring badly, he would recomend that route. Since he isn't a GI, I personally think it probably isn't just if I am actively flaring. There isn't a standard treatment protocol beyond surgery for the tumors I have, so there is a lot of guess work going on what to do next. Hopefully, it doesn't grow for a long time!

The awful thing is, though, the surgery damaged a nerve that controls my sphincter, so I am incontinent if my stool is loose. I am talking next level because I can't feel it coming! If I were to flare again..... I try not to even think about it.

I actually have to be careful about constipation currently, so the loose stool I have had has been when I overshot things to deal with that, thankfully!