Hi all - I’ve no idea how long it is since I’ve visited these parts, though I recognise a fair few names.
I’m wondering if anyone has been through
tube surgery (or PEG, or anything similar) and developed severe pain as a result?
For those folks who don’t know or don’t remember me, I have full body CRPS including major autonomic dysfunction. I’ve been relatively stable for a few years - but I fractured my foot this time last year, which lead to a CRPS flare. The oedema, circulatory compromise, skin compromise, etc., resulted in a really nasty episode of cellulitis (due to COVID.
I was able to avoid an inpatient hospital stay, but had IV abx for some time via the hospital in the home program). Cellulitis caused further CRPS flare, and as has been the pattern for me over the years, also caused a flare in my autonomic issues, including my gastroparesis. Only problem was, the GP flare turned out to be less flare and more deterioration, and in June I had to have a J tube placed via laparotomy. Pain on recovery was the worst I’ve ever experienced - I don’t actually remember the first 24 hours post-op due to the meds they pumped in trying - unsuccessfully - to control my pain.
Part of the issue I think was that the surgeon refused to listen to my requests that he liaise with my pain specialist - so nothing was put in place to manage my CRPS - with hindsight I wish I’d refused surgery until I had a guarantee that a plan was in place, but I’d been in hospital close to a month by this point, on TPN, desperate to get off TPN as my pain specialist and gastro were concerned about
infection risk with my stim and pump, and desperate just to get out of hospital.
Stoma was infected within 2-3 weeks of the tube being placed and wouldn’t resolve. They decided that infection had seeded to the cuff on the tube, and it was eventually replaced in October. Pain has now gone from severe to excruciating - I thought it was bad before, I’ve had CRPS for more than 20 years, I’ve fractured limbs, I’ve fractured my spine, I’ve had meningitis ... I’m learning pain all over again.
Never in my life til now have I had pain that causes me to lose consciousness. I can’t use my pump, because the weight of the giving set pulling on the tube is too painful. The only way I can get formula/fluids in is to temporarily tape my extension set and give tiny boluses via syringe (can’t tape for more than about
10 minutes as I’m so allergic it strips my skin off).
My pain specialist thinks it’s a combination of nerve compression in my abdominal wall, CRPS and inflammation due to chronic infection (infection has never resolved). I had to change gastros so that I could be under a HEN team, and the gastro I ended up with doesn’t care and won’t do anything - just told me that if it was really as bad as I say, he would remove the tube and I’d have to try harder to eat and drink ... I’ve kept nothing down - food or fluid - since May, and my weight has dropped from about
59kg/130lb in April to 36kg/80lb.
Searching the forums doesn’t yield much but I know there’s a wealth of knowledge and experience here, and figured I could only ask.
I hope you’re all keeping as well as can be - especially those of you in areas badly affected by COVID.
I made some paragraphs in your post to make it easier to read. I think it's difficult when posting from the phones.
Post Edited By Moderator (straydog) : 12/22/2020 8:10:13 AM (GMT-7)