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getting nowhere with my docs

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Ulcerative Colitis
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Posted 3/20/2022 1:04 AM (GMT -8)
I've been in remission from UC for 5 years. A scope last year showed that but it did show scarring. I'm on Aza and Vedo. I started feeling off in November and went to see my GI and Rheumy. I'm still not improving and I feel I'm getting nowhere with them as they say my bloods are fine and my scope was clear.

I'm having severe enough left-sided issues. Sometimes they seem rheumatic in nature other times they seem right over my descending colon as spasms
I've very fatigued and not able to do my usual chores or fitness that well.
No blood or mucus but much more constipation
Over the last month I've developed joint issues. Buttocks, elbows, hands, toe

I'm at a loss as to know what to do next while my bloods continue to show remission. Should I push my GI harder?
Posted 3/20/2022 3:16 AM (GMT -8)
Kevin_H,

I would keep informing your GI and rheumatologist of your issues. Perhaps they can increase your meds? There are some people that do not have an immediate change in their blood work.

I am someone that doesn't have my blood work show there is an issue and then suddenly it just changes-sometimes just alittle and sometimes alot. We have learned (because if a pattern of behavior) that when I am complaining there really is something wrong--so now... we start researching more.

I hope you get some answers. I keep a paper planner and write down symptoms, foods eaten, medications, when I am not feeling well. It helps pinpoint when it started and what I have tried that did, didn't work. I take it to my doctor appointments now. Prepare yourself,--I have gotten the ",It's part of your UC/Crohns journey" response several times. It feels like I am the one doing all the research and trying new things to resolve my issues....but at least my GI, PCP, Rhuemy are willing to try new things. I have a friend and her doctor doesn't try new things. He just moves her from med to med hoping it will make a difference.

Clo
Posted 3/20/2022 10:25 AM (GMT -8)
UC often doesn't show up in blood tests. Did they at least check your fecal calprotectin? It's tiring when you have to convince your doctors that you're ill. You know your body best so be persistent.
I changed doctors because of this (told them for weeks I'm not well, they decided it couldn't be a colitis flare, eventually 6 weeks later i turned up at the nurse's office and she can see that i look terrible so they scheduled an emergency colonoscopy the next day...had 60cm of moderate/severe inflammation 🙄). Now I have a doctor who responds immediately when i tell him i don't feel well.
Posted 3/21/2022 7:09 AM (GMT -8)
I would get a second opinion. Agree on requesting a fecal calprotectin test as well.
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