Difficult Decisions

I’m having a ‘no way am I getting out of bed’ day.  Fantastically severe upper abdominal pain, coupled with a hangover-type headache (no, I didn’t drink last night).  Remaining mostly horizontal seems to be the only way to keep it from precipitating into pain puking.

My next dose of Cimzia is due next Monday.  I haven’t ordered the refill, and my GI appointment isn’t until March 9th.  If I request the refill today, I should be able to pick it up Friday afternoon.  The real question is do I want to?  The side effects have been nothing to laugh at, even if it seems to be helping.  No bowel obstructions since I had my therapeutic endoscopy in October.  Lately I’ve had a resurgence in all of the fun Crohn’s associated symptoms, at least I think that’s what it is.  It could be the IBS for all I know, but IBS does not equal blood, so I feel it’s safe to say it’s probably Crohn’s, if not a combination of the two.

Since starting it, I’ve gotten the flu and two opportunistic infections, my neuropathy has gotten worse, my kidney function has gotten worse, my clotting factors tanked (and I was diagnosed with von Willebrand’s disease), I just had my very first seizure, my liver enzymes are through the roof, and my hair is falling out.  I could chock it up to coincidence, but check this shit out.


Blood and lymphatic system disorders: Anemia, leukopenia,lymphadenopathy, pancytopenia, and thrombophilia or thrombocytopenia .

Cardiac disorders: Angina pectoris, arrhythmias, atrial fibrillation, cardiac failure, hypertensive heart disease, myocardial infarction, myocardial ischemia, pericardial effusion, pericarditis, stroke and transient ischemic attack.

Eye disorders: Optic neuritis, retinal hemorrhage, and uveitis.

General disorders and administration site conditions: Bleeding and injection site reactions.

Hepatobiliary disorders: Elevated liver enzymes and hepatitis.

Immune system disorders: Alopecia totalis.

Psychiatric disorders: Anxiety, bipolar disorder, and suicide attempt.

Renal and urinary disorders: Nephrotic syndrome and renal failure.

Reproductive system and breast disorders: Menstrual disorder.

Skin and subcutaneous tissue disorders: Dermatitis, erythema nodosum, and urticaria.

Vascular disorders: Thrombophlebitis, vasculitis.

Neurologic Reactions

Use of TNF blockers, of which Cimzia is a member, has been associated with rare cases of new onset or exacerbation of clinical symptoms and/or radiographic evidence of central nervous system demyelinating disease, including multiple sclerosis, and with peripheral demyelinating disease, including Guillain-Barré syndrome . Exercise caution in considering the use of Cimzia in patients with pre-existing or recent-onset central or peripheral nervous system demyelinating disorders. Rare cases of neurological disorders, including seizure disorder, optic neuritis, and peripheral neuropathy have been reported in patients treated with Cimzia

I have been so terrified of surgery, that poisoning myself was a better alternative, but that seems nutzoid if I really think about it.  If I stop the injections, I’m left with prednisone to carry me through the flare.  If that fails, then it’ll come back to surgery.  My colon and small bowel are both affected, but the disease in my colon is far more mild when compared to the ileal disease, and a bowel resection +steroids could very well put me into remission.  Even if remission does happen, relapse is a guarantee and there’s no telling how long it will be until it happens.

I don’t know if forgoing medication and counting on surgical intervention is the reasonable thing to do.  I think it is, although I’m not sure I’m in the right state of mind to be making such decisions right now.  I’m worn down both physically and mentally, and I probably do need to see a psychiatrist to talk about my symptoms because bipolar disorder does run in my family and I have a small suspicion that my MDD may have been a misdiagnosis since it’s very cyclical in nature, in terms of going through highs versus lows.

The adult thing to do is to go ahead with my next dose, then talk to my GI guy about my concerns and hope that he takes me seriously.  If not, manchild will be on standby to put the smack down.

9 thoughts on “Difficult Decisions

  1. I remember how gung-ho I was about having TMJ surgery, but back then, I really thought it would improve my pain. And why did I think that? With what I know now, I’d say I was living in a fantasy world — a world created by doctors, who think they know it all.

    When you’re diagnosed with a butt-load of medical conditions, which do you focus on? Seems like a daily battle — or more like a minute-to-minute battle. Makes you wonder why American health care was ever thought of as good.

    Sometimes, I think you’re dealing with some very strong allergic reactions… but then, I’m not a doctor.

    I wish I had some answers for you… My answer was to give up on the medical industry, but I’m not sure that’s a good idea for you. What you need is a private doctor, unconcerned with money — one who only wants you to feel better. And I’m not sure even Dr. House would qualify for that…

    Maybe you could write your own medical TV drama? One where the patients have all the power. 🙂

    Liked by 1 person

    • I’m allergic to way too much stuff. My PCM (primary doc) is very open to my input, but he isn’t comfortable treating me for much because he says a lot of it is way beyond him. It’s a shame. Surgery has a high probability of helping out significantly, but like I said, it’s only a temporary fix. I could be fine for a few months, or a few years. Is hospital time plus recovery worth the risk? That’s the difficult thing to decide.

      Liked by 2 people

      • Yeah, my surgeon told me I had a 70% chance for improvement. I always thought I was just one of the unlucky ones, as the surgery made the pain worse. But come to find out, the surgeon’s estimate of “success” was way off. Go figure. And his definition of success certainly didn’t match mine — he was hoping for an increase in the range of motion for my jaw, and all I wanted was a decrease in pain.

        Surgery is a major trauma on the whole body. Even if I was dying, I’m not sure I would opt for surgery… but then, I’m old. 🙂

        Liked by 1 person

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