Need help with Crohn’s disease

learning to ask for help when you have Crohn's disease

So I ended up in the hospital for 4 days.  My inflammation marker in the blood test showed it was at 124 where 7 is considered ‘normal’.  That gave me the confirmation that I was indeed as sick as I felt. I wasn’t being lazy or exagurating in any way.

I was booked into hospital where the doctor gave me intravenous cortisone.  My veins kept collapsing when they tried to insert the drip and was extremely painful this time.  I’ve found whenever I have been on cortisone for a while prior to when they try to insert a drip, it becomes extremely painful.  This time was the worst yet.  There were 9 attempts to insert the drip, some of them with me trying to bite back screams.  Luckily they managed to keep a drip in me for as long as I needed to take the medication.

What I’ve learned about my doctor this time was that he actually has a typed out ‘protocol’ form that he gives to the nurses and they didn’t follow it.  He was extremely upset and laid a complaint against them.  The protocol states that the nurses may attempt a drip once and if it doesn’t work they are to call him personally to either come put it in himself or let him advice what to do next.  I really appreciated knowing that my doctor realizes that veins for drips could be a potential problem and have placed this protocol in place.  Now I know for next time to demand the nurse stop and call him.  This time round there was a nurse that was extremely rude and forceful and even though I told her that my doctor said we can leave the drip for the night (after 7 attempts) she continued.  She actually scared me with her attitude and made me feel very vulnerable and scared.  Very sad as most nurses are amazing.

I’m back at work and trying to cope emotionally with my body that doesn’t always feel like it’s keeping up.

Treatment wise my doctor feels we should try Humira injections to try get the inflammation under control.  I’ve always felt it’s more of a dramatic or last resort (with surgery being the very last resort), but strangely enough I’ve come to this time earlier than I anticipated.  I somehow don’t feel like I have the capacity to keep going on like this, so I’m giving Humira process a try.  Next step is to wait and hear whether my medical aid will pay for it as it’s extremely expensive.

In the meantime I’m trying my best to not stress, take one day at a time and look after myself as much as I can.

2 thoughts on “Need help with Crohn’s disease

  1. Belinda Post author

    Hi Sarah Kay!
    Thanks for the kind words and for stopping by! :)
    Love your passion & your site! Keep it going!
    Good to see you’re feeling so well (on Crohnology)

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