Hi all. I haven’t posted here in quite a long time, so for those who don’t know or remember me, I have full body CRPS with pretty full on autonomic involvement, including gastroparesis. After a long time being stable and well managed, I had an injury to my foot this time last year that triggered a major CRPS flare and
earlier this year rest also a deterioration in my GP symptoms. I ended up hospitalised for nearly a month and after trying less invasive interventions wound up having to have a jejunostomy tube placed in early June. It became infected a few weeks later and the tube was replaced in October in an attempt to resolve the infection. This failed, The infection is as bad as ever, with a load of chronic inflammatory changes into the bargain.
I have had incredibly severe abdominal pain since the first surgery, made worse still by the second. At base line it impacts my concentration, at worst, I black out. I’ve had CRPS for more than 20 years, I’ve fractured limbs, I’ve fractured my spine, I’ve had meningitis - but this pain beats all of that. I should be running feed almost 24/7 via a pump, but the weight of the extension and giving sets cause pain so severe it’s a no go.
My other doctors believe that the dc tube is compressing a nerve as it passes through my abdominal wall. My (now former) gastro doesn’t want to know - just says that “if it’s as bad as I say”, the tube needs removing and I need to try harder to eat and drink... I’ve been trying since April and my oral tolerance is near zero. I told him a couple of weeks ago that I didn’t want to deal with him any longer. I’m waiting on an appointment with a new gastro, but I’m struggling to deal with the pain. Meds wise I’m using a baclofen/morphine pump, and buprenorphine & paracetamol for breakthrough. My pain specialist is in the process of writing approvals so that my GP can prescribe IM hydromorphone. So I’m certainly not lacking for support, but I also don’t want to be relying so heavily on medications if I can help it. Has anyone been through similar? If so, how have you managed it?