I started to write a blog post on what happened but I just can’t. I’ve tried and tried but every time I try I manage to write a few sentences and then I have to leave it. The whole experience was extremely traumatic and I’ve accepted that for now it’s too difficult for me to write about in any great detail.
In a nutshell I went down to have a new line put in last Wednesday. Because of issues with my veins after about 20 minutes of trying the procedure had to be abandoned. During those 20 minutes despite lots of local anaesthetic and sedation I was in a lot of pain and found the experience really awful. As a result it was agreed that it would be best if the insertion was done under a general anaesthetic. It should have happened on the Thursday but they had some emergencies in theatre and I got bumped off the list. Any how it happened on Friday afternoon.
I know they must have had some issues putting the line in as before they put me to sleep they said the procedure should last 30-60 minutes but in fact it took closer to 2 hours.
The good news is that with a line in I will be able to go home. But the bad news is that my poor access is now starting to cause me real issues. I know that if I need a new line in the future it’s likely it will have to be done under a general anaesthetic again and I really worry that there will come a time when the veins in my chest are simply unusable. I’m assured by the team on the ward that there are other, inventive places they could put a line and that I should never have no access but inventive solutions are often difficult and painful solutions.
Ironically since getting my new line I’ve been so, so down. I think that although I know I’m getting closer to going home the effects of the last 12 weeks have hit me like a steam train crashing through a brick wall. I know that the way I try to cope with everything my illness throws at me is by soldiering on and putting all my difficult emotions into a box with the lid shut tight and securely padlocked. But sometimes the lid comes off and like Pandora’s box I never quite know what’s going to come flying out. I’ve had days where I haven’t been able to stop crying. I’ve been angry, sad, hopeless and downright bitter about the situation I find myself in. But if I think about it rationally though I know that all those emotions are driven by fear.
I’m terrified of what the future holds for me. I feel like I’m stuck in a horrible limbo where I have to accept that while I wait for surgery there is a very real chance that there will be other hospital admissions. And then there’s the fact that even when I do finally have surgery it might not fix me. In fact it could make everything worse. I’m 40 years old and the thought of living like this for another 20, 30 or 40 years scares the hell out of me. Funnily enough this was on the Crohn’s & Colitis Awareness Facebook page today and just sums up how I’m feeling right now.
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