- Joined
- Jan 1, 2011
- Messages
- 45
Hi everyone,
To introduce my problems, I have 150cm of small bowel which still has active inflammation and lots of growths and strictures after two small bowel resections and I have a recto vaginal fistula which is open. I have no more options for surgery or treatment at this time so I am trying to work out a regime to manage my symptoms. I really need my strictures opened up at bit but thats all they can do surgically and I have to wait at least 6 months. Can you all assume that I do all the basics like hot baths, low residue (I dont eat any fruit or veg at this point for fear of blockages), heat pads? I need meds advice.
I am basically trying to handle a short bowel which is strictured is like trying to simultaneously tie and untie your shoes laces. I want the food to stay in and be absorbed but also not get stuck. And at the end it has to come out not to watery my fistuals get upset.
My current pain relief is: 2 x 30/500 cocodamol in the morning pain at about 4/10, it has a constipating effect which helps my short bowel syndrome and my fistulas. If I used the loo more than 6 times a day they begin to get inflamed and hurt. This is normally all right for the whole day. However, I do feel sick all day and I have little appetite. I think this is because later on in my system the coedine gives me constipation which I can't get rid of.
If the pain hasn't gone by then I take a 50mg tramadol at about pain score 5/10. If the pain gets worse I am usually having a bowel obstruction, and now my only other option is a further tramadol. Tramadol has a constipating mechanism so it can often make the pain worse. Also by the time I am in the this much pain 8/10 I need something fast acting. Tramadol takes between 1-2 hours to kick in for me. I also take buscopan at this point but to stop cramping pains but it doesn't not help more the obstruction and can sometimes prolong my pain because my gut has stopped.
At this point I usually try to go to sleep, or go to hospital. At this point the best thing I find is a Cyclizine IV drip which is used to counteract Opiate Induced Constipation. 8/10 I will have this and my bowels will clear instantly with blessed relief. This only really happens when I am in hospital, usually I am in too much pain to go and I would rather stay home and suffer and sit and A&E. This sort of thing happens about once a week and only last a few hours or sometimes I will get cramps for days and days and nothing I take makes them better. The more pain killers I take, the more constipated I get and more pain I am in. Usually I have to stop eating for several days entirely.
I am in hospital for something else at the moment and I have been referred to the pain team. I had bad stomach cramps and they made me have morphine and it make the pain much worse because of the constipation side effects of morphine which is worst of the opiates. The pain team suggested this other drug "Oxycodone". I have been having it at 5 and 10mg as a subcutaneous injection. I have found it amazing! The pain goes instantly not like with Tramadol which takes 1-2 hours for it to even touch it.
The major downside I am having with it is that I will be extremely sleepy but instead of a nice sleep I keep having hallucinatory-naps which last about 2-3 minutes and I will eventually realise I am kind of day dreaming and wake up. I do this all night too. And after 2-3 days of this I am starting to get a headache and feel ill. Is this the oxycodone or something else?
I like the idea of oxycodone because I would only have to take small amounts because it is stronger rather than all that coedine and tramadol, and I like that I could inject it, instant relief rather than usual hours of it. And I would be hoping because I am taking smaller amounts of Oxycodone the constipating elements would be lessened. I still need make my bowel not too loose because it upsets my fistulas.
Has anyone else tried oxycodone? What has been your experience of it? Did it constipate you? What sort of pain relief is it?
Has anyone else had IM cyclizine at home? I take the tablet from at home which isnt that effective most the time but when I get one of these serious obstructions I think it might be good to have a version which I could use at home with some more punch to it.
Sorry this is so dark, I hate to have to think about all this stuff. I wish I didn't have to take any of it. I am desperate to think of a regime which would mean I could go back to work. Trying to handle a short bowel which is strictured is like trying to simultaneously tie and untie your shoes laces. Not to mention the fistulas.
Any advice from people who take any of these meds and how they use them would be greatly appreciated.
Best wishes,
Lizzy:ghug:
To introduce my problems, I have 150cm of small bowel which still has active inflammation and lots of growths and strictures after two small bowel resections and I have a recto vaginal fistula which is open. I have no more options for surgery or treatment at this time so I am trying to work out a regime to manage my symptoms. I really need my strictures opened up at bit but thats all they can do surgically and I have to wait at least 6 months. Can you all assume that I do all the basics like hot baths, low residue (I dont eat any fruit or veg at this point for fear of blockages), heat pads? I need meds advice.
I am basically trying to handle a short bowel which is strictured is like trying to simultaneously tie and untie your shoes laces. I want the food to stay in and be absorbed but also not get stuck. And at the end it has to come out not to watery my fistuals get upset.
My current pain relief is: 2 x 30/500 cocodamol in the morning pain at about 4/10, it has a constipating effect which helps my short bowel syndrome and my fistulas. If I used the loo more than 6 times a day they begin to get inflamed and hurt. This is normally all right for the whole day. However, I do feel sick all day and I have little appetite. I think this is because later on in my system the coedine gives me constipation which I can't get rid of.
If the pain hasn't gone by then I take a 50mg tramadol at about pain score 5/10. If the pain gets worse I am usually having a bowel obstruction, and now my only other option is a further tramadol. Tramadol has a constipating mechanism so it can often make the pain worse. Also by the time I am in the this much pain 8/10 I need something fast acting. Tramadol takes between 1-2 hours to kick in for me. I also take buscopan at this point but to stop cramping pains but it doesn't not help more the obstruction and can sometimes prolong my pain because my gut has stopped.
At this point I usually try to go to sleep, or go to hospital. At this point the best thing I find is a Cyclizine IV drip which is used to counteract Opiate Induced Constipation. 8/10 I will have this and my bowels will clear instantly with blessed relief. This only really happens when I am in hospital, usually I am in too much pain to go and I would rather stay home and suffer and sit and A&E. This sort of thing happens about once a week and only last a few hours or sometimes I will get cramps for days and days and nothing I take makes them better. The more pain killers I take, the more constipated I get and more pain I am in. Usually I have to stop eating for several days entirely.
I am in hospital for something else at the moment and I have been referred to the pain team. I had bad stomach cramps and they made me have morphine and it make the pain much worse because of the constipation side effects of morphine which is worst of the opiates. The pain team suggested this other drug "Oxycodone". I have been having it at 5 and 10mg as a subcutaneous injection. I have found it amazing! The pain goes instantly not like with Tramadol which takes 1-2 hours for it to even touch it.
The major downside I am having with it is that I will be extremely sleepy but instead of a nice sleep I keep having hallucinatory-naps which last about 2-3 minutes and I will eventually realise I am kind of day dreaming and wake up. I do this all night too. And after 2-3 days of this I am starting to get a headache and feel ill. Is this the oxycodone or something else?
I like the idea of oxycodone because I would only have to take small amounts because it is stronger rather than all that coedine and tramadol, and I like that I could inject it, instant relief rather than usual hours of it. And I would be hoping because I am taking smaller amounts of Oxycodone the constipating elements would be lessened. I still need make my bowel not too loose because it upsets my fistulas.
Has anyone else tried oxycodone? What has been your experience of it? Did it constipate you? What sort of pain relief is it?
Has anyone else had IM cyclizine at home? I take the tablet from at home which isnt that effective most the time but when I get one of these serious obstructions I think it might be good to have a version which I could use at home with some more punch to it.
Sorry this is so dark, I hate to have to think about all this stuff. I wish I didn't have to take any of it. I am desperate to think of a regime which would mean I could go back to work. Trying to handle a short bowel which is strictured is like trying to simultaneously tie and untie your shoes laces. Not to mention the fistulas.
Any advice from people who take any of these meds and how they use them would be greatly appreciated.
Best wishes,
Lizzy:ghug:
