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.



10 thoughts on “It’s Still An Uphill Battle

  1. It all sounds so daunting. Would you be able to have another child post ostomy? I am sorry you are facing this. Sending my love

    • Theoretically I can have a pregnancy with an ostomy *but* it decreases your fertility something like 30% *and* I’m 37.5 years old *and* I would need at least 6 months to heal post-surgery and then… will I really want to put my body through a pregnancy after all that?? I’m just not sure I’ll have the strength (mental & emotional) to go through the surgery and then quickly turn around and try to conceive, especially if it would be difficult to conceive. But I won’t rule it out as an option. XOXO

  2. Oh gosh, I’m so sorry to hear that you are still struggling!! And to read your conversation with mamajo about the possible second child implications. This all just sounds so unfortunate! I wish I could give you a giant hug!

  3. I know the feeling of being blind sided by your illness and the feeling of just wanting to get it all over with however that may be, simply because you’re sick and tired of being sick and tired. It all sounds so incredibly hard and a bit heart breaking and I’m sorry you’re going through this 😦 sending hugs !

  4. I’m going to be that friend who speaks honestly and hopes you know it comes from a place of love and deep caring for you. Here goes….
    I wouldn’t want surgery either. However. Is it *realistically* possible to conceive and stay pregnant while looking after a busy toddler/preschooler while sick or entering and exiting the revolving door of ever increasing doses of medication (which may or may not be compatible with pregnancy?)? I appreciate that for most women pregnancy suppresses the immune system. It does the opposite to me. I think your symptoms were significantly reduce today during your last pregnancy and that might happen again. It might not. Then what? I wonder if you could draft a timeline with the specialist and surgeon that takes into account your desire to have another child, The ticking clock of biology you’re up against and the need for you to be healthy and not literally running to the toilet at all hours? Could you manage a stim cycle and preserve eggs or even embryos right now to be transferred post surgery? I appreciate the cost of that is no joke (still paying off my own loans!!!) but we did not aside for just one moment… It would be so great for you to have your health in better shape before not only getting pregnant but caring for a newborn and BG. Even if your symptoms go away in pregnancy, how are you going to manage with two small children, one of whom is a newborn, when they are flood back in postpartum? And then you’ll be looking at urgent surgery? I love you. I’m not telling you what to do. But I am asking you to consider looking at other possibilities and exploring if they might work. As someone who had (relatively) minor emergency abdominal surgery 8 days after an emergency cesarean, I would not wish that shite upon anyone!
    Whatever you do, whatever happens please know you’re in my thoughts and my heart and I will be cheering you on. Always.

  5. I’m sorry you are dealing with this all right now. That must be so frustrating that you can’t seem to reduce the prednisolone anymore without having side effects. I hope your doctor would be open to trying the four week Stelara option to see if that would help. Like others have suggested, do bring up the desire for another child with your doctors to see if they can help to plan what’s best for you.

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