I’ve been quiet this week cause I’ve been really poorly. On Monday I didn’t feel good so decided I would have a lazy day and I slept for most of it. But then by Monday evening my pain had gone through the roof and I was in agony. I didn’t sleep a wink and by Tuesday’s ward round I was in the bed crying in pain. The doctor increased my pain relief and said we’d “need to ride it out”. But instead of getting better the pain just got worse and worse to the point that I couldn’t get out of bed and make it to the loo which is three steps away without the nurses helping me. And talking of the loo I realised I hadn’t opened my bowels since Sunday. So this was looking like another bowel obstruction. I spent Wednesday in agony and when the consultant saw me on Thursdays ward round he couldn’t believe how unwell I was. He said he would get straight on the phone to the surgeon and tell him he needed to ‘sort me out’ because this could not continue. The surgical doctors came to see me and decided that they wanted another CT scan to see what’s going on which I had done on Friday morning. On Friday afternoon one of the gastro drs came to tell me the CT report was in and it showed that my bowel is much, much worse since my last scan (which was only at the end of April) and that there was a chance I may need emergency surgery over the weekend. This would be a nightmare scenario as I would end up with whoever was on call performing the operation and they may not have the experience or expertise of dealing with a patient like me with such complicated surgical history and I could end up being left in a mess. Hubby was allowed to come in and visit me today and it was lovely for him to lie on the bed with me and just cuddle me; I really needed that cuddle. So I’m hoping to make it through the weekend without needing surgery and then hopefully see Mr E, the surgeon who was originally willing to operate on me next week. I’m obviously nil by mouth so all my meds are IV going through the Picc line. I’m still on the antifungal medication but Friday night they started the TPN again. The heat isn’t helping and I just feel really crap. It seems like it’s one step forward and two steps back.
Being on azathioprine, influximab and prednisone is helping to control this recent Crohns flare up. But unfortunately they work by wiping out my immune system making me more susceptible to all the bugs doing the rounds. I refuse to stay at home and be held hostage by these meds though- for me they are there to give me my life back, not to make me a prisoner in my own house, so the inevitable has happened and I’ve got a cold. ‘It’s only a cold’ you might think, but with no immune system to fight it off this cold has made me pretty poorly. Yesterday I couldn’t get out of bed and felt so, so ill. I was coughing and struggling to breathe so I’m pretty sure I’ve got a chest infection too. But I can’t confirm that because apparently even being immunocompromised with a suspected chest infection is not enough to see a GP these days! I spoke to the receptionist at the GP surgery this morning who told me that all the urgent appointments for today were gone (and this was at 8.25am, aft...
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