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Reply to "How did you decide it was time for surgery?"

@Michael posted:

S -

You mention that steroids are doing a number on your bones ... back in the mid 80s, after a couple of years of relatively high dose prednisone, I was dx'd with avascular necrosis in my knees.  Only a matter of time until I needed them scoped to clean them out.

Fast forward to 2009 and I had bilateral replacement at 46 yrs old.  And that was after back surgery (because I walked like John Wayne for years).  And elbow surgery.

Now hindsight is unfair, and there is no definitive proof that it was the prednisone, but I would have pulled the trigger earlier than I did and not subjected my body to the cocktail of medications that I did.

My 32 year ride has not been perfect but the years I lived with active UC were far, far more challenging -- emotionally & physically -- than the last 3 decades.

Last point and certainly an oversimplification, but after being on this site for years and talking to many UC/pouch folks ... my totally unscientific belief is that either you'll respond fairly early to meds or you won't.  Folks will disagree but that search for the panacea begins to preclude 'rational' decision-making imo ... how many enemas?  How many different meds?  How many diets?

Today my joints are good ... I can climb and bike again ... keep the big picture in mind ... it's your life.

- M

Thanks for the response. I think I understand your last point about meds. I was mostly fine on only mesalamine my first 6ish years with UC, although never totally in remission during those years. Then I was fine on only mesalamine with pred once or twice a year for another 5 years. But then in 2018, I got into the never-ending flare. The biologics never worked though. Yeah, I don't feel like trying diets or anymore supplements, and one enema a night is more than enough and not doing the trick anymore. I guess you're right that it becomes kind of insane trying all these medication cocktails for years on end. It certainly is stressing me out to say the least.

Sorry about your knees. That's scary. I got osteoporosis at age 35. I reversed it to osteopenia at 36 last year but it is still borderline and I think I have another stress fracture in my foot now just from walking. I'm depressed about it because I was finally getting back into shape. I just really worry if I can't even safely walk, let alone run. Those are my passions in life.

Thanks again for sharing your experience. Your perspective helps.

Last edited by Sara14
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