Thanks Q--I'm feeling a bit better, just normal weakness from Stelara. Heart racing though. Nothing like it was even 2 days ago. I hope that never happens again. Im having semi formed - loose stools now, seems better than the putrid smell and yellow stools.
I guess it's possible I had food poisoning on that first day during the infusion....but that doesn't account for the rest. I'm very hesitant to go for IVIG next month, will have to see how it goes.
Black cheese-- it was gouda with charcoal. Delish and fruity. Pared well with dark chocolate
I won't be having it again though!
I asked if it was safe for IVIG and Stelara before starting it 2 years ago. Truth is docs don't know, but I haven't seemed to have any issues from it. In fact I skipped a few infusions because I was doing so well on Stelara. At times I thought the combo was working so well.
Thanks for the new drug, I'll look into it. There may be a study for filgotnig here so I do have options. My GI has sent a referral for a stem cell study at Cleavland to repair the fistulas. If I'm flaring, I won't meet the criteria. Not to mention the cost of travel etc. I'm sure the Canadian gov't won't cover it.
RE: DNR. I was very scared and sad. I have 2 elderly, infirm family members left and no next of kin. This was the first time I was totally alone in the hospital. My mom is 83 and now unable to tend to me. 2 years ago she came to the hospital almost every day for 6 weeks, brought me homemade food, hand creams, harassed the docs, helped me shower.....This time I packed 2 pairs of undies, a bottle of gatordae and ensure. I wondered who would bring me more underwear?? I've naturally been tearful since my discharge with fears of what will happen to me if I get really, really sick again, who will clear out my home should the worst happen etc Even bring me homemade food....I barely ate in hospital...GF food wasn't that appetizing. I think my mom is burnt out too from my disease. She's angry that no one will repair my fistulas but if I was in the States they would at least try. Any way, I'm not sure how I'll handle these issues but it seems inevitable that my next hospitalization I'll also be alone. The docs were amazing and took my case seriously but you do need someone who cares for you in the hospital.
I feel strong enough to attempt to take my dog to the park today. I'm sure that will do my mind good. Thanks for the concern Q. I really appreciate it.
Post Edited (U B Tough) : 7/21/2019 10:14:02 AM (GMT-6)