Hi, I have had severe Reflex Sympathetic Dystrophy (RSD/ CRPS) for the last 8 years which is full body and generalised dystonia. I am on 160mg oxycodone a day alongside ketamine, diazipam, baclofen, tizanidine & trihexyphenidryl. Having been on opiates for so long I am used to opioid induced constipation. However, I am now experiencing constipation for over 8 days, feel sick and been vomiting for the last couple of days, my stomach is tender, lack of appetite, have a heavy mucus discharge when I am able to pass anything (but no stools) and significantly worse back/ hip pain as well as experiencing increased need to urinate/ incontinence. Around two weeks ago I was passing alot of dark blood clots but this has since stopped (since this current period of constipation). I have tried lactalose, senna & fybogel (combined) with no relief. The constipation is impacting my bladder and is making me require the toilet every couple of hours. Also, in case this is relevant, I am a wheelchair user who is unable to stand, with very little movement in my arms or from my chest down. I eat relatively healthily and drink a litre plus of water a day. Due to the level and type of (neuropathic) pain I have it is very difficult for me to judge the nature and severity of non neuropathic pain (it tends to feel like someone has set fire to me, or poured acid over me or as if I'm being stabbed constantly and a knife twisted throughout my body) so it may be that my gastro system is in agony.
it's just that my GP is so useless - he's fine if I go in and see him and tell him that I think I have x/y/z... and please can you do a scan/ blood test/ whatever or can we try antibiotics etc but who freely admits that he hasn't got a clue. I HATE hospitals with a passion (spent well over a year as an inpatient over the last 8 years) and have decided that I'm sticking around for quality of life not quantity and I will NOT be admitted again as generally I have zero confidence in them (for example - I am severely allergic to latex and had a latex catheter inserted resulting in my bladder shutting down for nearly a year, not being fed for 4 days because the nurses kept forgetting I can't feed myself or hold a drink, being left flat continuously for 10 days because I couldn't use the electric bed controls and worst having several medical procedures done which I did not consent to but, because I cannot sign a consent form the doctors did anyway).
Sorry about the list but I'm sure you can see why I don't want to ever have to be an inpatient again. Would it be possible to tell me what tests I should ask for so that my GP can try and arrange them for me as an outpatient?
Second, you really do need to see a doctor to see if your bowels have become blocked. An abdominal ultra sound might give some insight into the problem, and a colonoscopy might be a good idea.
About your hospital issues - That is BAD!! The hospital staff should have been very concerned that your trays were being left untouched. I think that you could find a hospital that would take better care of you. Also, hospitals have patient advocates. Their job is to make sure that your needs are being met. If you can't feed your self, it is their job to make sure that someone is available to feed you. Same thing with adjusting the bed and other things. Just out of curiosity, what country do you live in and what kind of health care system do you have?
I suggest that you find a more caring doctor and find a hospital that will care for you.
Unfortunately I'm in the UK with the NHS - the NHS is great in many ways (heavily subsidised or free prescriptions, paying for surgery and hospital admissions etc) but it is also plagued with long waiting times, difficulty getting expensive prescriptions etc. I have found that the worst hospital was The National Hospital for Neurology as the staff there are lazy, badly trained etc and I have experienced awful treatment there - the staff hadn't washed me for over a week and hadn't brushed my hair despite me having severe spasms which appear similar to convulsions. When my mum visited it took her over 3 hours to get a brush vaguely through my hair and we initially thought it would have to be shaved off. What annoyed me most about them was that they carried out several procedures which I had NOT given consent for (and which I had firmly said I didn't want). I ended up having to get friends and my boyfriend to stay with me to carry out my personal care and to be able to stop the doctors before they carried out any more procedures (they were planning on placing a supa-pubic catheter despite me making it incredibly clear I did NOT want one).
Thanks for the suggestions regarding tests - having looked a couple of things up I am concerned that I may have gastro paresis as this sometimes occurs to people with severe RSD/Dystonia.
I am glad that you did end up having someone stay with you to take care of basic needs.
Those are just part of the problems with NHS. People in the US need to understand "nothing in life is free". In the case of NHS, the care is generally so bad that your overall health deteriates faster than it should. My brother-in-law's mother is in a wheel chair because she went home from the US with back issues to "free" health care. It took her over a year to get her the surgery she needed, which would have take at most a few weeks here. Her "free" health care cost her mobility and independence.
Take care and know that if you need to be hospitalized, you will need to have someone stay with you to hold the hospital accountable.
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