Hi to all,
I apologize for this very long first post.
I'm a 60yo male. I was diagnosed with UC about 15 years ago. Did asacol (worked for about 7 years), then immuran(useless), then tried Remocaide(no response). Got c-diff from a hospitalization (probably). Finally prednisone (on and off with taper to avoid steroid problems), then about 5 years ago was diagnosed with pancolitis and opted for J-pouch after a hail mary attempt with fecal matter transplant... Surgery had complications (colon had perforation and was attached to abdominal lining, appendix discolored and removed (non-cancerous)). Finally, once over issues and about 1-2 mos after re-connection, issues settle down and felt hugely better.
Two issues/observations/questions:
1) After J-pouch: A few times a year I would have night sweats and a high fever. After calling the surgeon's office i was told to take flagyl or cipro in response to what was suspected pouchitis. Both flagyl and cipro gave me issues-- and I would discontinue after a few days. Fever and night sweats didn't re-occur, no bad (or worse than normal) bowel issues. I later discovered I had Steven Johnson's syndrome for flagy (if you don't know what that is you are very very lucky), and a possible allergy to cipro... In my panic to have a treatment for pouchitis I asked questions all over the place. My surgeon, who is the best doctor ever, told me that fever and night sweats were not a common symptom of pouchitis and that the antibiotics where more a precaution that wouldn't have been suggested if they knew I had Steven Johnson's syndrome. It might not have been pouchitis. Any comments? Does anyone have experience with isolated (one night) fevers (> 101) accompanied by bad night sweats?
2) Because of surgery complications( J-pouch didn't initially start up properly) I was given one large dose of steroids to kick start. I tapered with prednisone afterwards but had some odd reactions and was sent to an endocrinologist. By endocrinologist order, I have been on hydrocortisone (about 20mg/day) up until this year. I repeatedly asked endocrinologist if I could stop taking, reduce, etc... I asked about testing over and over... Finally I got a second opinion (waited 2 months for appointment ) and found out I should have gotten a stimulation test. Using stimulation test as measure of adrenal response, I was able to taper to 0. Not on any steroids now. First endocrinologist was... misinformed... to be polite... So, for people with steroid issues, do a stimulation test! My question is whether anyone has had fever and night sweats possibly because of steroids over/wrongly prescribed? I haven't had night sweats and fever since I stopped steroids.
Any comments would be helpful.
Ed