Manchester outcome
Hi guys,
Well I've been in hospital a week now and I finally saw my consultant yesterday. He had just received the letter from Manchester outlining his recommendations for my future treatment and care. We discussed it at length but I'll get back to that in a minute, here's the letter...it's easier to explain by just copying it out for you but I apologise for the jargon...
thank you for asking me to see Natalie. I was delighted to meet her today together with her mother who accompanied her. I won't recount the history of the tests which you and xxx have embarked on previously which are outlined clearly in your referral letter for which I am grateful. she is currently maintained on a wide bore NJ tube and feels she is losing weight despite this as she is intolerant of the feed rate due to pain.
It is clear that she has some background pains which are mainly related to feed down the left side of her abdomen which she feels is new. It is this pain which limits together with some bloating her feed rate.
On examination there was a scar from the previous jejunostomy which has been removed and the stitches.
There is also a central scar from the enterra placement which she tells me never gave her any symptom benefit from her Gastroparesis. there was no allodynia evident on examining her abdomen today.
She tells me that she did have Augmentin and VSL#3 from xxx for bloating which helped for a time. I note there have been unsuccessfull attempts to try and repeat a bacterial overgrowth test more recently. she feels in addition to nutrients she also struggles to get water and electrolytes in. she feels a lot of these problems post dated hemorrhagic complications of her second child's birth and a virus thereafter. She is awaiting gall bladder surgery by xxx.
she numerated her current medication as Buccanl Stemitil, Domperidone, Mirtazipine, Tramadol, Lansoprazole, Movicol, Oramorph, Lorazepam, Paracetamol and Loperamide.
we had about 40 minutes together covering her past medical history, her current symptoms and possible future management strategies and I would make the following suggestions.
Firstly, it would seem she has never tried any neuropathic agents for her pain and I would recommend in the first instance a trial of Gabapentin starting at 300mg three times a day. Since she is not due to see you for some time this can be started in primary care by her GP. I would thereafter recommend following the BNF guidelines in general practice regarding increments of Gabapentin according to tolerance and response. If she is intolerant of Gabapentin then Pregabalin can be tried. It does not appear that she has tried the neuropathic pain agents Nortryptyline or Duloxetine either and these may also be possible add ins to the Alpha 2 Delta ligons if need be. If we can get on top of her pain with these neuropathic pain agents which are usually more relevant for gastrointestinal neuromuscular disease then we may be able to get the feed rate up. I reiterated that opiates are I'll advised in this situation since as well as causing TLR4 receptor mediated microgistial activation with resultant opioid induced hyperalgesia though of course also effect GI motility and may be implicated in the progression of enteric dysmotility to frank intestinal failure and are certainly associated with negative outcomes in the dysmotility HPN group.
Secondly I would suggest she has her NJ tube replaced with a thinner bore more tolerable enteric tube. I am not sure in the North East whether anyone has access to the corral device for no radiological replacement of NJ tubes and certainly I have one or two patients who have had long term maintenance for years on NJ tube replacement every 8 weeks using a cortrak. We do not currently have direct access to this ourselves in Salford although we are developing a business case for it but I have been available locally.
Thirdly I would suggest retesting for SIBO and try rifaxamin in combination with VSL#3 given the previous benefits she had.
Fourthly, in primary care whilst awaiting your further review I would suggest she has her micronutrients checked in particular her zinc, selenium, electrolytes, magnesium, vitamin D, vitamin A and calcium levels and replacement as indicated. If there are concerns about her water and electrolyte intake it is perfectly reasonable for some of these to go down the Naso jejunal tube also.
Fifthly, we discussed the role of the gall bladder surgery and certainly in dysmotility and pain patients unless there is clear evidence of LFT disturbance or thickening of the gall bladder with definite evidence of colicky pain then the gall bladder surgery may well be best avoided in this situation and may be an innocent bystander.
Sixthly, I would suggest involvement of a clinical psychologist for support with the chronic symptoms and also exploration of possible cognitive approaches to pain, Natalie has understandably been disappointed in the past by a focus on possible psychological causes for her symptoms. I can understand her frustration with this but a different focus on support and coping with current symptamology would be helpful and useful.
Lastly, we discussed HPN and whilst short term TPN may be having a role whilst pain control is optimised I reiterated the advice you have given her yourself that HPN in motility patients is an option of last resort as this group of patients generally do worse with PN in terms of complications and certainly the cohort of motility patients on opiates do worst of all. None the less if all else fails and HPN becomes necessary then for the Salford intestinal failure unit a separate referral would have to be made.
I hope these suggestions are of some help and I would be happy to be involved again in the future should the need arise but I have not otherwise made any routine arrangements for Nataliesnreview in clinic.
....ok that's enough typing for one day I'll finish off tomorrow and fill you in and which routes my GI is going to try first etc...for now I'm going back to sleep xxx
Well I've been in hospital a week now and I finally saw my consultant yesterday. He had just received the letter from Manchester outlining his recommendations for my future treatment and care. We discussed it at length but I'll get back to that in a minute, here's the letter...it's easier to explain by just copying it out for you but I apologise for the jargon...
thank you for asking me to see Natalie. I was delighted to meet her today together with her mother who accompanied her. I won't recount the history of the tests which you and xxx have embarked on previously which are outlined clearly in your referral letter for which I am grateful. she is currently maintained on a wide bore NJ tube and feels she is losing weight despite this as she is intolerant of the feed rate due to pain.
It is clear that she has some background pains which are mainly related to feed down the left side of her abdomen which she feels is new. It is this pain which limits together with some bloating her feed rate.
On examination there was a scar from the previous jejunostomy which has been removed and the stitches.
There is also a central scar from the enterra placement which she tells me never gave her any symptom benefit from her Gastroparesis. there was no allodynia evident on examining her abdomen today.
She tells me that she did have Augmentin and VSL#3 from xxx for bloating which helped for a time. I note there have been unsuccessfull attempts to try and repeat a bacterial overgrowth test more recently. she feels in addition to nutrients she also struggles to get water and electrolytes in. she feels a lot of these problems post dated hemorrhagic complications of her second child's birth and a virus thereafter. She is awaiting gall bladder surgery by xxx.
she numerated her current medication as Buccanl Stemitil, Domperidone, Mirtazipine, Tramadol, Lansoprazole, Movicol, Oramorph, Lorazepam, Paracetamol and Loperamide.
we had about 40 minutes together covering her past medical history, her current symptoms and possible future management strategies and I would make the following suggestions.
Firstly, it would seem she has never tried any neuropathic agents for her pain and I would recommend in the first instance a trial of Gabapentin starting at 300mg three times a day. Since she is not due to see you for some time this can be started in primary care by her GP. I would thereafter recommend following the BNF guidelines in general practice regarding increments of Gabapentin according to tolerance and response. If she is intolerant of Gabapentin then Pregabalin can be tried. It does not appear that she has tried the neuropathic pain agents Nortryptyline or Duloxetine either and these may also be possible add ins to the Alpha 2 Delta ligons if need be. If we can get on top of her pain with these neuropathic pain agents which are usually more relevant for gastrointestinal neuromuscular disease then we may be able to get the feed rate up. I reiterated that opiates are I'll advised in this situation since as well as causing TLR4 receptor mediated microgistial activation with resultant opioid induced hyperalgesia though of course also effect GI motility and may be implicated in the progression of enteric dysmotility to frank intestinal failure and are certainly associated with negative outcomes in the dysmotility HPN group.
Secondly I would suggest she has her NJ tube replaced with a thinner bore more tolerable enteric tube. I am not sure in the North East whether anyone has access to the corral device for no radiological replacement of NJ tubes and certainly I have one or two patients who have had long term maintenance for years on NJ tube replacement every 8 weeks using a cortrak. We do not currently have direct access to this ourselves in Salford although we are developing a business case for it but I have been available locally.
Thirdly I would suggest retesting for SIBO and try rifaxamin in combination with VSL#3 given the previous benefits she had.
Fourthly, in primary care whilst awaiting your further review I would suggest she has her micronutrients checked in particular her zinc, selenium, electrolytes, magnesium, vitamin D, vitamin A and calcium levels and replacement as indicated. If there are concerns about her water and electrolyte intake it is perfectly reasonable for some of these to go down the Naso jejunal tube also.
Fifthly, we discussed the role of the gall bladder surgery and certainly in dysmotility and pain patients unless there is clear evidence of LFT disturbance or thickening of the gall bladder with definite evidence of colicky pain then the gall bladder surgery may well be best avoided in this situation and may be an innocent bystander.
Sixthly, I would suggest involvement of a clinical psychologist for support with the chronic symptoms and also exploration of possible cognitive approaches to pain, Natalie has understandably been disappointed in the past by a focus on possible psychological causes for her symptoms. I can understand her frustration with this but a different focus on support and coping with current symptamology would be helpful and useful.
Lastly, we discussed HPN and whilst short term TPN may be having a role whilst pain control is optimised I reiterated the advice you have given her yourself that HPN in motility patients is an option of last resort as this group of patients generally do worse with PN in terms of complications and certainly the cohort of motility patients on opiates do worst of all. None the less if all else fails and HPN becomes necessary then for the Salford intestinal failure unit a separate referral would have to be made.
I hope these suggestions are of some help and I would be happy to be involved again in the future should the need arise but I have not otherwise made any routine arrangements for Nataliesnreview in clinic.
....ok that's enough typing for one day I'll finish off tomorrow and fill you in and which routes my GI is going to try first etc...for now I'm going back to sleep xxx
Hi Hun,
ReplyDeletesounds like they want to explore every avenue rather than shrug their shoulders and run away.
I hope you are ok hun.
Hugs
Rach xx
hi babes,
ReplyDeletejust watched your amazing video.....again. It makes me cry every time I watch it.
Just to let you know I am thinking of you and holding your hand every step of the way xxx
Rach