Not sure how what advice I'm looking for, but I guess I just need to rant. The last few months have felt a bit crap.
I was diagnosed with UC 2 years ago after a severe flare and hospital admission. Since the hospital admission, things have been kinda up and down (general trend was up until recently). On the positive, I had a sigmoidoscopy in Summer 2017 which showed mild inflammation and my CRP and faecal calprotectin were always normal. Also on the positive side, my tiredness, fevers, abdo pain, tenesmus and nausea have gradually disappeared. I've also been lucky to never need steroids to date. I had one complication - I've had an unexplained drop in kidney function since diagnosis. I always felt it was medication related and therefore stopped Pentasa in 2017 but the renal team queried if it's just due to inadequately managed IBD. I had some ongoing symptoms (tiny amounts of occasional blood and random weeks of going 2-3 times a day) but my IBD consultant didn't feel these symptoms were in keeping with my investigation results. As I was managing reasonably on Salofalk enemas, I was happy with the plan of wait and see.
Unfortunately, my symptoms worsened in the last few months. I started going to the bathroom 2-5 times daily and it was beginning to impact my general life (big variation in frequency, no idea why). I've had no other GI symptoms apart from a few weeks (one week each month) of general malaise.
The renal team suggested to restart Pentasa in August 2018 as I was feeling worse with a plan for extra blood test monitoring. My renal function was gradually improving from August until my blood test this week - along with some general malaise, my CRP was raised and eGFR dropped to 57! I've also got a fever today
I've stopped all medications since the blood result and had a renal biopsy yesterday. I've had sigmoidoscopies, gastroscopies and even a wisdom tooth removal with minimal sedation/pain relief, but this kidney biopsy was something else! The doctor said I could get back to work in 2 days, but that is definitely not happening!
Honestly, I have no idea what my body is doing anymore and just feel crap about
it. When I had my last flare, I had so many symptoms than simply going to the toilet more often but maybe I'm about
to have one anyway. I'm hoping my kidneys recover and I don't get a big flare. I also really don't want a steroid course, but it feels like there'll be no choice. I know this post is all a garbled mess too.