UBT & Clo--
The Stelara seems to be working. I saw the IBD Specialist... Last week? Thursday before last, so like 10 days ago. I had started having some blood again and I began to worry that the Stelara was wearing off after only 4 weeks. Last week I had a return of symptoms--some blood, urgency. But now these last few days have been better--more formed, less urgency. I wish I understood how any of this works--what causes the symptoms and what makes them go away! I am clueless. But just grateful to be stable at the moment. I toilet usually 2-3x per day, at least partially formed, usually no blood.
I have anal leakage and that is frustrating--it smells (like REALLY bad sometimes) & gives me "diaper rash". I asked IBD Specialist if she'd wager a guess at what's causing it--my perianal fistula, my thrombosed hemorrhoid, or is it residual damage from my recent flare? Or all of the above? IBD Specialist took a look and said she could hardly even see my fistula
opening (above my anus) so apparently that is healing. She coukdn't say why I have the anal leakage but told me her CRS "won't touch me" until my disease is well-controlled. My thought (which I did not say out loud) was "What if this is as good as it gets?" Will they keep pushing me off? Uhg. Biggest deal for me is that I'm dropping my prednisone 2.5 mg per week--I'm down to 25 mg and going to drop to 22.5 mg on Monday! I'm nervous to get down to 20 mg and below, but agreed to drop 2.5 mg per week no matter what and be done in 10 more weeks. Prednisone and being sick caused me to lose almost 30 lbs. Ironically I am putting on weight as I drop the prednisone and heal, and I've gained all of it back. Which I would rather have kept off 15 lbs, but whatever--at least I'm feeling better. Trying to get back to the gym, just doing some moderate (walking at an incline on the treadmill) cardio a couple days per week, trying to build up my stamina. And trying to keep up with the toddler!
So I don't think I'm headed toward surgery soon. I think I'm heading toward some sort of half-baked remission. But I don't expect I'll ever be the same as I was before this flare.
Oh and UB, I might be getting a yeast infection. Stelara has made my teeth more sensitive but that's about
all I can think of as far as side effects. I take my first injection (beyond the initial infusion) in a couple weeks.
EDIT: Also my freaking hair has been falling out for several weeks but I don't feel that has anything to do with Stelara. Could be the months of prednisone, the few weeks of 6MP, or the aftermath of being sick for so long. Luckily people can't tell but I certainly notice, plus I'm covered in hair all the time.
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE
Post Edited (Plucky) : 8/12/2017 9:10:25 PM (GMT-6)