Last Thursday I had an outpatient appointment with the Community Pain Team (CPT). Believe it or not there is no long term, chronic pain management service within the hospital, which to me is crazy, but probably a result of them not having the budgets for one. As a result when I came out of hospital in the summer I had to go and see my GP and get a referral into the CPT.
While in hospital I am visited a couple of times a week by the pain nurses from the chronic pain team so they can keep an eye on my ketamine and morphine doses. They advised me to attend the outpatient appointment if I possibly could so that when I went home there would be some provisions in place to help manage my pain. One of the things I’ve been looking into and talking about with the doctors and pain nurses is Narcotic Bowel Syndrome. This is a relatively newly recognised condition where the bowel can be damaged due to long term opiate use. It’s becoming more widely recognised and studied as a result of the opiate crisis in the States and I do wonder whether my years and years of painkiller use have caused my bowel to become more damaged.
Another question I had for the CPT was whether it would be better for me to be on a small dose of ketamine at home instead of opiate based medicines. Unfortunately the hospital are not allowed to discharge patients with ketamine so the only way to get this prescribed would be from a consultant in the CPT. However, long term ketamine use can damage the bladder so it’s weighing up the risk of that against any means possible benefits.
Luckily Hubby was on annual leave so he picked me up from hospital and drove me to a small GP surgery 10 miles outside of Nottingham City centre. Ironically the doctor that I saw was a consultant anaesthetist who worked at the very hospital I had just driven from! He even knew the pain nurses that had been visiting me! We had a long chat about my bowel issues and the impact they have on me day to day. I explained that at its very worst the pain made it impossible for me to get out of bed or even manage the 10 steps to the bathroom unaided and that even on a good day I still struggled to perform even everyday, basic tasks. He acknowledged that I have a very complicated medical history and that it’s not going to resolve any time soon unless the adalimumab injections start to work and kick the crohns into remission or I have surgery. I told him that I didn’t expect him to make me pain free; I wasn’t that unrealistic! But I would like to have some quality of life- maybe an hour or two a day where I could do stuff with the kids or take the dog out or even manage a trip to the supermarket! You know just really basic stuff that most people take for granted but for me would be almost magical.
He said he probably wouldn’t like to put me on ketamine for any length of time but admitted that it wasn’t really his specialty and that he would refer me to a colleague of his who was a world renowned pain expert who just happens to work in Nottingham. Now I have been seen by this pain Prof years ago as I was under the CMT when we first moved to Nottingham. But because I kept ending up in hospital and I had to cancel my appointments the CPT discharged me as the rule was that you could only cancel or amend 2 appointments before being ‘kicked out’. Crazy I know and I did try to explain it to them but it was a case of ‘computer says no’ and I remember at the time I was too poorly to fight them.
So the plan is for me to see the pain Prof when I’m no longer an inpatient and discuss with him what the approach is going to be. Although I left without any specific plan I do feel like I was listened to and I didn’t feel like I had been fobbed off in any way.
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