My despicable health

So here we are again… I am bleeding, have urgency, maybe only 5 toilet visits a day (because I’m holding it, would be more if not in work). My blood count is still low, so she wants me to reduce my aza again for another TWO WEEKS. FYI I’ve been on my normal dose all week and still no better. Now, I can work just fine, it’s a bit uncomfortable but doing ok, going out, I manage….. it’s all okish. My haemoglobin is low obviously.

The problem is…. flares get worse and do not go away on their own. She’s making an appt to see my specialist, don’t know when that will be yet.

Do I a) say Fuck it, let’s have surgery, I’ve been flaring twice a year or so every single year lately, bad ones too. ****** Before that I would try a last-ditch begging (letter writing attempt) to ask if I can try infliximab, despite it not being used for colitis at my hosp as not in the budget*********

b) I.V. steroids / steroids. FUCK NO. That’s not even an option. I wouldn’t be able to work. I nearly killed myself last time, the insomnia was unbearable, and looking like a fucking hippopotamus – plus there is no guarantee it will actually work as each time they are less and less effective. Although, they might be more inclined to work because things aren’t dire, yet.

Now when I thought about having surgery before I was always like, blah blah, as long as I’m healthy, I’ll stick with ileostomy. I’ve changed my mind since then, I would pretty much want to be put back together (reversal) for reasons of, well, you know, wanting to have sex, be normal (I know you can have sex, but you know what I mean.) But the thought of not being stitched back together properly worries me, the problems some of you have after, blood etc, STILL not being normal poo-poo wise.

Also, I know it’s better to have surgery while ‘relatively’ well and not on shit-loads of steroids for healing purposes etc.

What do I do, and why won’t flares go away on their own? P.S. scared and rather fed up. Love xx

Or of course, there’s always option c) watch hollyoaks and ignore it.

3 thoughts on “My despicable health

  1. The steroids were not nice, I would not do those. No hippo! You do whatever you have to and whatever feels right, and you don’t do a single thing until you are absolutely sure that is what you want to do. Big hug to you. It sucks, I know it sucks, but at least you have options. I hope you feel better very soon, you know I’m here whenever you need me.

  2. I suppose you’d have to consider long term…would surgery, even with its possible side effects actually give you a better quality of life for years to come? Rather than taking meds that are hard on organs and really often only a bandaid on a broken bone, would surgery alleviate the need for meds entirely? If so, its worth strongly considering. However, I’d make damn sure the one doing the surgery has done a million or so of them with great results each time before submitting to such a thing. Either way, follow your heart and your mind and do what is right for you! Only you can decide that.

  3. God I just don’t know. I know I would ignore it, but that probably means you should do the surgery…so sorry!

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