It’s Still An Uphill Battle

Hey guys. Things are ok but not great.

  1. Our house is still not finished, but they said it will really REALLY be done by the first weekend of September. It damn well better be, or they will have to answer for it.
  2. I saw the IBD Specialist a couple weeks ago and she pushed me to wean off the Prednisone quickly, regardless how I felt. I had been having symptoms again (blood, mucus, urgency, frequency) since 3-4 weeks post Stelara infusion. And as I dropped the Prednisone from 27.5 mg to 25mg, and then 25mg to 22.5mg, my symptoms continued to worsen. I “waved the white flag” and messaged the Nurse Practitioner after 2 days at 22.5mg, because I felt awful (fatigued, body aches) and moreover I was back to *running* to the toilet several times per day, straining, bleeding, rectum feeling swollen/hurting, waking in the night to toilet, etc. So the NP suggested I take my Prednisone back up to 25mg and see if it helped. And then call to make an appointment with the MA.
  3. When I called to make an appointment to see IBD Specialist, I spoke with the RN instead of the MA (the RN is not as competent as the MA but she’s very sweet). The RN started to schedule me but stopped to talk to NP and IBD Specialist. When she got back to me, she said they want me to see the Colorectal Surgeon (CRS) at my next appointment. I asked to see the CRS at my last appointment but IBD Specialist said it was pointless to discuss my perianal fistula/incontinence/thrombosed hemorrhoids at this point, because the CRS wouldn’t do anything until I’m in remission. So then, the fact that IBD Specialist was referring me to the CRS now is NOT good… She believes that I am steroid refractory and 50/50 I am failing Stelara. IBD Specialist wants to prepare me for surgery (which for me would be a permanent ileostomy).

I really, truly thought the Stelara was going to work. And in fact, I do think it works. But I need to take it every 4 weeks instead of every 8 weeks (because that’s when it wore off and I have proven to metabolize these medications quicker than most people, as evidenced by my Humira serum levels never getting above a “2” even with weekly injections and no antibodies). And IBD Specialist has *all* her patients on an every-8-week injection schedule with Stelara. So I highly doubt she will do me the favor of letting me try every 4 weeks. And I get it–how much time would it really buy me? Surgery is imminent. I just don’t want to deal with it right now. I want to move into my new house and have another baby. I want to enjoy the holidays with my family–BG is at a magical age and I want to soak up every minute of her little-ness. I’m so tired of being sick and tired though, that I’m about ready to throw in the towel and just do what they tell me (instead of researching and fighting for more options). I’m not “ready” for an ostomy, but I am really, really tired.

XOXO,

MLACS

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