• Guest, the forum is undergoing some upgrades and so the usual themes will be unavailable for a few days. In the meantime, you can use the forum like normal. We'd love to know what you think about the forum! Take the 2025 Survey »

Gastroparesis pain

L

Londongirl

Member
Hi everyone, I'm new to this forum. I have had type 1 diabetes since 2007. I struggled to control my blood glucose levels. Two years ago I became really I'll with stomach problems and was diagnosed with gastroparesis. Since that time I have really suffered with pain. I do not eat solid foods anymore and at the moment, the only thing I can manage is itsu clear chicken soup along with one prescribed nutrient drink per day (although I am often unable to tolerate that either). I have been on a feeding tube but that caused me more pain so had to be removed. I am in a lot of pain right now, despite using a tens machine. I am at my wits end and would appreciate any suggestions anyone might have.
 
Thank you so much, I really do appreciate your help. I pop pills all day long that are supposed to help with my pain , but they don't help at all most of the time. Thanks again Biggles2
 
Hi,
I'm so very sorry about your pain, have you seen a pain specialist?
It must be very frustrating not being able to eat.
I hope more can be done for you.
Take care
 
Yes, I am under the pain clinic. I ended up blacking out due the pain getting so severe after I wrote my first post. My poor son called NHS direct for advice and they sent an ambulance. So I'm in A&E as I'm writing this, waiting to be given intravenous morphine. This happens to me on a fairly regular basis. I suffer pain every day, but sometimes the pain gets so bad its unbearable and iI end up having to come to A & E. I'm so so tired of constantly having to deal with all this. I really do appreciate your response, thank you
 
Have you a specialist team for GP?? Are you in London?

Have a look at Giftuk on FB.
Join it. Its aosed group of persons that have gastro intestinal failure in uk.

Back in a while. Hope that A&E can help...
 
Thank you for the advice donnellysdogs. Yes I am in London and was under the specialist team for GP at the UCL Hospital, but my consultant wrote me off because apparently and according to the letter she sent to me and my GP gastroparesis should not cause as much pain as I suffer and since the NJ feeding tube she put me on three times, was not successful for me, there is nothing else she can do for me!. My GP was so angry and wrote to her telling her what she thought whilst re-referring me to the same team but asking if I could be seen by the head consultant of the gastro team. So I now have an appointment on the 4th of January. Thank you all so much for your help and advice.
 
Ask for a referral from your GP to Dr Emmanuel Anton... he is at UCLH... I cannot understand why you havent been referred to him.....

It would even be worthwhile paying to see him privately if needed.... (again GP can write letter) but you speak to his secretary and arrange to see him privately and quicker... he would put you back thru nhs for further treatment.

Unfortunately GP is just not understood by gastro consultants...

There are too many patients with this vile disease that docs just do not recognise the pain and put so much back on the patient as mental health problems.

Leeds has a good reputation but obviously that is a long way for treatment when you feel so **** ill.

If you could get your GP to write direct to Anton Emmanuel he has about the best reputation. He personally sorted my best friend out with full ileostomy, stoma bad and urology bag too. My friend can now at least eat. Her problems very different as stems from the most chronic rare dystonia...

If you can get to see anton but when you arrive you get passed off to a lower consultant (they do try to do this)... you can refuse to see anybody but him.... (I have done this with my own consultants. I think continuity of care from someone you trust is imperative).

NJ feeding is not always successful and they can and do find other ways and sort out. Currently got another friend in Leeds (her 3rd christmas) and tonight has finally got a feed after a week... it is so **** tough and you also have the diabetes to handle..

I havent got any answes, but to point towards the gastrro intestinal failure trust on FB as really nowledgeable real persons experiencing the same and treatments that vary so very, very much!!

Please let us know how you get on, on the 4th.

Do go prepared. And although it is such a devastating disease to handle do try to keep emotions in check so they cant blame mental health distress contributing..... as said, some medics... esp those in A&E just do not get pain...... I put it to my docs like this.... telling me pain cannot be that bad is like me telling you "change your thinking about toothache when you need a tooth taken out"....see if you could think your way to have your tooth pulled out without injections or alchohol or drugs.... "- that is my pain... it is real and cannnot be overcome by thinking differently or using distraction techniques.

Be prepared to ask them
what the longest period of time they have gone without eating or having nutrition...

I so wish there was a quick fix and so much more knowledge around GP but there is so very, very little.

Also ask if there are any research programmes that you could be involved with....that is also another way to get additional help.....
 
Hi @Londongirl

I’m sorry to hear about your problems and your pain. I don’t have GP, but unrelated painful, digestion problems and I’ve had NJ tubes in the past (the insertion was as much fun as water boarding).

I hope the advice you’ve been given helps. If you’re open to trying a different approach while you wait for medical treatment, the one thing that helped me was an 8 week mindfulness course; by following a book and audio CD I was able to “turn down” the worst pain and substantially reduce the painkillers I was taking. If I remember, it started to help within the first few weeks.

“Mindfulness for health: a practical guide for relieving pain, reducing stress and restoring wellbeing” Dr D Penman & V Burch.

It was recommended to me by a Nurse and I believe it’s endorsed by the BMA. (If you’re interested, I suggest you buy the paperback version as that comes with the CD; rather than the Kindle version.)
 
Ledzeptt said:
Hi @Londongirl

I’m sorry to hear about your problems and your pain. I don’t have GP, but unrelated painful, digestion problems and I’ve had NJ tubes in the past (the insertion was as much fun as water boarding).

I hope the advice you’ve been given helps. If you’re open to trying a different approach while you wait for medical treatment, the one thing that helped me was an 8 week mindfulness course; by following a book and audio CD I was able to “turn down” the worst pain and substantially reduce the painkillers I was taking. If I remember, it started to help within the first few weeks.

“Mindfulness for health: a practical guide for relieving pain, reducing stress and restoring wellbeing” Dr D Penman & V Burch.

It was recommended to me by a Nurse and I believe it’s endorsed by the BMA. (If you’re interested, I suggest you buy the paperback version as that comes with the CD; rather than the Kindle version.)
Click to expand...
Hi there, sorry I haven't replied sooner, but I have literally been floored by my GP pain. As to your suggestion that I might try 'mindfulness'. I am willing to try anything! I do already try to practice deep breathing techniques, positive thinking and meditation and I practice all of these before I even experience any pain in order to try and prevent any pain from occurring in the first place. Unfortunately, these techniques don't ways work for me. But I do believe that on such occasions, these techniques might not work successfully because I start to feel pain and then work myself up into a state of anxiety which I am sometimes unable to overcome no matter how hard I try and I do try. I will definitely try the book and accompanying CD that you suggested. Thank you for your advice and for taking the time to reply
 
donnellysdogs said:
Ask for a referral from your GP to Dr Emmanuel Anton... he is at UCLH... I cannot understand why you havent been referred to him.....

It would even be worthwhile paying to see him privately if needed.... (again GP can write letter) but you speak to his secretary and arrange to see him privately and quicker... he would put you back thru nhs for further treatment.

Unfortunately GP is just not understood by gastro consultants...

There are too many patients with this vile disease that docs just do not recognise the pain and put so much back on the patient as mental health problems.

Leeds has a good reputation but obviously that is a long way for treatment when you feel so **** ill.

If you could get your GP to write direct to Anton Emmanuel he has about the best reputation. He personally sorted my best friend out with full ileostomy, stoma bad and urology bag too. My friend can now at least eat. Her problems very different as stems from the most chronic rare dystonia...

If you can get to see anton but when you arrive you get passed off to a lower consultant (they do try to do this)... you can refuse to see anybody but him.... (I have done this with my own consultants. I think continuity of care from someone you trust is imperative).

NJ feeding is not always successful and they can and do find other ways and sort out. Currently got another friend in Leeds (her 3rd christmas) and tonight has finally got a feed after a week... it is so **** tough and you also have the diabetes to handle..

I havent got any answes, but to point towards the gastrro intestinal failure trust on FB as really nowledgeable real persons experiencing the same and treatments that vary so very, very much!!

Please let us know how you get on, on the 4th.

Do go prepared. And although it is such a devastating disease to handle do try to keep emotions in check so they cant blame mental health distress contributing..... as said, some medics... esp those in A&E just do not get pain...... I put it to my docs like this.... telling me pain cannot be that bad is like me telling you "change your thinking about toothache when you need a tooth taken out"....see if you could think your way to have your tooth pulled out without injections or alchohol or drugs.... "- that is my pain... it is real and cannnot be overcome by thinking differently or using distraction techniques.

Be prepared to ask them
what the longest period of time they have gone without eating or having nutrition...

I so wish there was a quick fix and so much more knowledge around GP but there is so very, very little.

Also ask if there are any research programmes that you could be involved with....that is also another way to get additional help.....
Click to expand...
Hi again, sorry I did not reply sooner, but I have been in a terrible state because of GP pain! Thank you for your further advice, I already know about Dr. Emmanuel at the UCH and have already asked for a several to him, but I have been told that I am already seen by the other top Castro specialist in Dr.Emmanuel's team whose name is Dr.Zarate-Lopez. I have not been very impressed with her previously for various reasons, but I saw her again on the 4th Jan and I was actually happy with the outcome if the appointment Dr.Zarate-Lopez told me to up my dose of gabapentin so that I am now taking 900 mg three times a day plus one 300mg taet before I go to bed. I know this is a huge dose of gabapentinto be taking a especially on top of all the other meds I take, but desperate times call for desperate .measures. My GP has been telling g me that Dr.Zarate-Lopezhas been emailling her and informing her that I will need to go into hospital and have an nj tube inserted again whilst being monitored and then depending on how I tolerate the nbj tube,a peg may then be considered. However, the GP pain I suffer, moves around and is sometimes around where my stomach is situated, sometimes.es under my left ribcage and sometimes in the lower left hand side of my abdomen-in approximate the place where the inside e d ofannj tube would hang and where a peg would be inserted. Therefore, it is obvious to me that both an nj tube and also a peg would just cause me further pain (the nj tube did cause me further pain when inpreviousley had them inserted). Thankfully, during my appointment on the 4th, Dr Zarate-Lopez agreed with everything I said to her. Therefore she is now sending a federal to the pain clinic (who I am already under) for me to have a nerve blocking injection into my spine and then, according to what she told me, if I am OK with the said nerve locking injection, I can the be referred for a nerve stimulating pacemaker to be inserted? I am still trying to research all of this, but it all sounds very positive to me.
 
Londongirl said:
Hi again, sorry I did not reply sooner, but I have been in a terrible state because of GP pain! Thank you for your further advice, I already know about Dr. Emmanuel at the UCH and have already asked for a referal to him, but I have been told that I am already seen by the other top gastro specialist in Dr.Emmanuel's team whose name is Dr.Zarate-Lopez. I have not been very impressed with her previously for various reasons, but I saw her again on the 4th Jan and I was actually happy with the outcome of the appointment. Dr.Zarate-Lopez told me to up my dose of gabapentin so that I am now taking 900 mg three times a day plus one 300mg tablet before I go to bed. I know this is a huge dose of gabapentin to be taking, especially on top of all the other meds I take, but desperate times call for desperate .measures. My GP has been telling me that Dr.Zarate-Lopez has been emailling her and informing her that I will need to go into hospital and have an nj tube inserted again whilst being monitored and then depending on how I tolerate the nj tube,a peg may then be considered. However, the GP pain I suffer, moves around and is sometimes around where my stomach is situated, sometimes.its under my left ribcage and sometimes in the lower left hand side of my abdomen-in approximate the place where the inside end ofan nj tube would hang and where a peg would be inserted. Therefore, it is obvious to me that both an nj tube and also a peg would just cause me further pain (the nj tube did cause me further pain when inpreviousley had them inserted). Thankfully, during my appointment on the 4th, Dr Zarate-Lopez agreed with everything I said to her. Therefore she is now sending a referal to the pain clinic (who I am already under) for me to have a nerve blocking injection into my spine and then, according to what she told me, if I am OK with the said nerve locking injection, I can the be referred for a nerve stimulating pacemaker to be inserted? I am still trying to research all of this, but it all sounds very positive to me.
Click to expand...
 
Londongirl said:
Hi again, sorry I did not reply sooner, but I have been in a terrible state because of GP pain! Thank you for your further advice, I already know about Dr. Emmanuel at the UCH and have already asked for a several to him, but I have been told that I am already seen by the other top Castro specialist in Dr.Emmanuel's team whose name is Dr.Zarate-Lopez. I have not been very impressed with her previously for various reasons, but I saw her again on the 4th Jan and I was actually happy with the outcome if the appointment Dr.Zarate-Lopez told me to up my dose of gabapentin so that I am now taking 900 mg three times a day plus one 300mg taet before I go to bed. I know this is a huge dose of gabapentinto be taking a especially on top of all the other meds I take, but desperate times call for desperate .measures. My GP has been telling g me that Dr.Zarate-Lopezhas been emailling her and informing her that I will need to go into hospital and have an nj tube inserted again whilst being monitored and then depending on how I tolerate the nbj tube,a peg may then be considered. However, the GP pain I suffer, moves around and is sometimes around where my stomach is situated, sometimes.es under my left ribcage and sometimes in the lower left hand side of my abdomen-in approximate the place where the inside e d ofannj tube would hang and where a peg would be inserted. Therefore, it is obvious to me that both an nj tube and also a peg would just cause me further pain (the nj tube did cause me further pain when inpreviousley had them inserted). Thankfully, during my appointment on the 4th, Dr Zarate-Lopez agreed with everything I said to her. Therefore she is now sending a federal to the pain clinic (who I am already under) for me to have a nerve blocking injection into my spine and then, according to what she told me, if I am OK with the said nerve locking injection, I can the be referred for a nerve stimulating pacemaker to be inserted? I am still trying to research all of this, but it all sounds very positive to me.
Click to expand...
P.s just read through my reply to Donnelly's dogsled sorry about the dreadful spelling mistakes!
 
Londongirl said:
Hi again, sorry I did not reply sooner, but I have been in a terrible state because of GP pain! Thank you for your further advice, I already know about Dr. Emmanuel at the UCH and have already asked for a several to him, but I have been told that I am already seen by the other top Castro specialist in Dr.Emmanuel's team whose name is Dr.Zarate-Lopez. I have not been very impressed with her previously for various reasons, but I saw her again on the 4th Jan and I was actually happy with the outcome if the appointment Dr.Zarate-Lopez told me to up my dose of gabapentin so that I am now taking 900 mg three times a day plus one 300mg taet before I go to bed. I know this is a huge dose of gabapentinto be taking a especially on top of all the other meds I take, but desperate times call for desperate .measures. My GP has been telling g me that Dr.Zarate-Lopezhas been emailling her and informing her that I will need to go into hospital and have an nj tube inserted again whilst being monitored and then depending on how I tolerate the nbj tube,a peg may then be considered. However, the GP pain I suffer, moves around and is sometimes around where my stomach is situated, sometimes.es under my left ribcage and sometimes in the lower left hand side of my abdomen-in approximate the place where the inside e d ofannj tube would hang and where a peg would be inserted. Therefore, it is obvious to me that both an nj tube and also a peg would just cause me further pain (the nj tube did cause me further pain when inpreviousley had them inserted). Thankfully, during my appointment on the 4th, Dr Zarate-Lopez agreed with everything I said to her. Therefore she is now sending a federal to the pain clinic (who I am already under) for me to have a nerve blocking injection into my spine and then, according to what she told me, if I am OK with the said nerve locking injection, I can the be referred for a nerve stimulating pacemaker to be inserted? I am still trying to research all of this, but it all sounds very positive to me.
Click to expand...

That is all very positive.

Mindfulness can reduce pain and help with better positive thinking.

It wont take that pain away though.... it is using distracting techniques, but its like needing a tooth out and saying to the patient-"oh, just think positively"- no patient suffering toothache and needing the tooth out survives thinking positively......

I dont think people really realise the depth of pain involved.... however the gastro team you are under have sorted my friend out superbly. She has a urostomy and ileostomy and stoma bag bag and has syringe drivers of pain meds but she is the most positive, laughing, beautiful, caring lady I have ever met in my life. We are travelling to her annual check up by ambulance in May and this is fantastic considering that 2 years ago she was so seriously ill and almost died and was in hospital for 6 weeks. She is completely wheel chair bound and no use of legs or hands.

There can be positive outcomes... the only time my friend gets slightly cheesed off is when her ileostomy bag blows when she has been out to bed and she has to wait till 3am lying in runny faeces and she cannot do anything to help herself at all. But that isnt too often.

She can suck food (lock jaw) and eat some foods which is in a hugely better place for her.

I am sure that the team you are under will do everything they can to help. GP to be honest is so, so difficult to manage and it is devastatingly hard for patients but also the teams.

I know with my friend though she talks to surgeons and consultants with a wicked sense of humour and laughter and gets them on her side to help her that way.

Try to keep a hobby of some desription... may be like colour art therapy for adults.... my friend despite permanent cramped hands has found a technique to use a camera and does photography a a new hobby and this helps her enormously.

I'm sure they are now taking you very seriously and are doing their utter best.

Do think of things that you can do whilst in hospital.... find a hobby that you can do there...
 
Back
Top