Re: Pain relief for NCCP - Any suggestions?

[Guest guest]

Hi, Jane! Welcome! Hope we can be of some help. Sounds like you're both going

through a lot.

I'm far from expert on the pain aspect -- I had DES for thirty years, but it

resolved before the active A started. The first twenty-five years, I just sat

still and bit the bullet. The last five, I had a prescription for hyoscyamine,

which helped enormously. Catch is, we are each different, and I think the causes

of the pain are different, too. This is the link for the search here:

https://www.google.com/search?q=Given+the+stats%2C+I%27m+*really*+surprised+they\

+would+do+dilatations+on+*anyone*+under+sixty. & ie=utf-8 & oe=utf-8 & aq=t & rls=org.mo\

zilla:en-US:official & client=firefox-a & channel=rcs#hl=en & client=firefox-a & rls=org\

..mozilla:en-US:official & channel=rcs & q=+site:health.+achalasia+pa\

in+management+NCCP & sa=X & ei=zJ2zT7TtHou36QGFoLWaCQ & ved=0CGgQrQIwAA & bav=on.2,or.r_\

gc.r_pw.r_qf.,cf.osb & fp=12bd07e76d2f5a20 & biw=853 & bih=405

With 2,500 entries, it is obviously a huge issue in this disease.

I'd also be very concerned about just basic nutrition. While throwing oil and

sugar at the diet may prevent weight loss, it sure isn't a guarantee of health.

When that is all it's offered, the body will do it's best; but it cannot make a

silk purse, when all it's getting is sow's ears. A *lot* of the difficulty I

had the last year while the LES was shutting down/shut down was vitamin and

mineral deficit. Even the quality of the protein matters: the soy and/or whey

in many of the breakfast shakes is really awful for ongoing health. Whole eggs

or powdered egg white is much superior if that is the direction you're choosing.

Butter or coconut oil beats the heck out of soy oil or canola. Make sure he's

getting really good blood tests!! This is my post on eating when you can't eat.

achalasia/message/65451

Good luck and prayers your way.

in WV

>

> Hi,

> I joined this group recently to support my husband. He was diagnosed with E

about 25 years ago. Back then they cut the muscle close to his stomach and made

a new flap to prevent stomach acid coming back up. A few years later they cut

some other muscle to allow food to pass more easily into his stomach.

> As these ops were carried out a long time ago, they went in through his chest

which has left lots of scar tissue which has prevented any further ops.

> My H was told he was at end stage E in January this year and there was nothing

that could be done to help him. If he started losing weight then they would

have to look at removing his oesophagus replacing it with some of his intestine

and lifting his stomach but this would be as a last resort. Fortunately with a

combination of milkshakes for breakfast, soup for lunch and sloppy stuff for

dinner, supplemented by lots of chocolate and biscuits (cookies) he's been able

to maintain his weight for now. He also takes esomeprazole (Nexium)and gaviscon

extra.

> The real issue is how he manages the severe pain that his experiences pretty

much every day relating to NCCP. Currently he's taking slow release morphine

twice a day at a fairly low dose (20mg in total) but it's not really helping.

His GP has contacted the Consultant to ask what other pain relief he could

suggest. The Consultant has said there isn't anything they can suggest and they

don't understand why H is getting so much pain. This is a consultant at a big

teching hospital (Addenbrokes in Cambridge UK) Our GP is looking at other pain

relief options but is struggling to know what to do.

> Can anyone suggest anything? I have got some ideas from some other posts but

I thought I'd ask again if that's ok.

> Thanks

> Jane

>

[Guest guest]

Was morphine the first/only thing they've tried? Have they tried PREVENTING the

pains at all, or just treating them when they happen?

I'm going to repost my standard " NCCP " post, and it's also available in the

FILES section of the website. It's been around for ages now, and a lot of

people have found it helpful.

Debbi in Michigan

>

> Hi,

> I joined this group recently to support my husband. He was diagnosed with E

about 25 years ago. Back then they cut the muscle close to his stomach and made

a new flap to prevent stomach acid coming back up. A few years later they cut

some other muscle to allow food to pass more easily into his stomach.

> As these ops were carried out a long time ago, they went in through his chest

which has left lots of scar tissue which has prevented any further ops.

> My H was told he was at end stage E in January this year and there was nothing

that could be done to help him. If he started losing weight then they would

have to look at removing his oesophagus replacing it with some of his intestine

and lifting his stomach but this would be as a last resort. Fortunately with a

combination of milkshakes for breakfast, soup for lunch and sloppy stuff for

dinner, supplemented by lots of chocolate and biscuits (cookies) he's been able

to maintain his weight for now. He also takes esomeprazole (Nexium)and gaviscon

extra.

> The real issue is how he manages the severe pain that his experiences pretty

much every day relating to NCCP. Currently he's taking slow release morphine

twice a day at a fairly low dose (20mg in total) but it's not really helping.

His GP has contacted the Consultant to ask what other pain relief he could

suggest. The Consultant has said there isn't anything they can suggest and they

don't understand why H is getting so much pain. This is a consultant at a big

teching hospital (Addenbrokes in Cambridge UK) Our GP is looking at other pain

relief options but is struggling to know what to do.

> Can anyone suggest anything? I have got some ideas from some other posts but

I thought I'd ask again if that's ok.

> Thanks

> Jane

>

[Guest guest]

Sounds very similar.

Your husband may be able to start with tricyclic antidepressants and then try

calcium channel blockers.

That morphine dose is very low, and may not be titrated to effect. Also,

analgesics - even mu agonists - have different responses for different people.

Your husband may need to rotate to another if morphine doesn't work. For me,

pills stuck in mega-esophagus with the contents of trapped foods/fluids

absorbing most of what was ingested. So liquid formulations, like MSIR solution,

worked best.

Hope something works.

Steve

>

> Hi,

> I joined this group recently to support my husband. He was diagnosed with E

about 25 years ago. Back then they cut the muscle close to his stomach and made

a new flap to prevent stomach acid coming back up. A few years later they cut

some other muscle to allow food to pass more easily into his stomach.

> As these ops were carried out a long time ago, they went in through his chest

which has left lots of scar tissue which has prevented any further ops.

> My H was told he was at end stage E in January this year and there was nothing

that could be done to help him. If he started losing weight then they would

have to look at removing his oesophagus replacing it with some of his intestine

and lifting his stomach but this would be as a last resort. Fortunately with a

combination of milkshakes for breakfast, soup for lunch and sloppy stuff for

dinner, supplemented by lots of chocolate and biscuits (cookies) he's been able

to maintain his weight for now. He also takes esomeprazole (Nexium)and gaviscon

extra.

> The real issue is how he manages the severe pain that his experiences pretty

much every day relating to NCCP. Currently he's taking slow release morphine

twice a day at a fairly low dose (20mg in total) but it's not really helping.

His GP has contacted the Consultant to ask what other pain relief he could

suggest. The Consultant has said there isn't anything they can suggest and they

don't understand why H is getting so much pain. This is a consultant at a big

teching hospital (Addenbrokes in Cambridge UK) Our GP is looking at other pain

relief options but is struggling to know what to do.

> Can anyone suggest anything? I have got some ideas from some other posts but

I thought I'd ask again if that's ok.

> Thanks

> Jane

>

[Guest guest]

I've had some success in managing my pain with phenergan suppositories. I have

no idea why they help, but they do. Pain meds...antispasmodics...muscle

relaxers...nitro...NOTHING has helped me outside the suppositories. Might be a

route worth considering.

[Guest guest]

Thanks to everyone for replying to me so quickly. My H is going to discuss the

various options you have suggested with his GP in the next few days.

He has tried an increased dose of morphine since Monday but this has just made

him very tired but hasn't done anything for the pain, so he's keen to try some

other meds.

There doesn't appear to be any treatment that can be considered as he's end

stage. Before his last endoscopy the surgeon suggested a couple of different

options but once he'd seen the results he said there was nothing that could be

done as there was no functioning muscle and basically he just had a downpipe

from his throat to his stomach. So the only thing we can do is try to manage the

pain and continue to find foods that are nutritious and digestable (not easy

when H seems to have a deep mistrust of fruit and veg!).

Thanks again, it makes a big difference having a source of advice from people

who really understand the issues.

Jane

>

> I've had some success in managing my pain with phenergan suppositories. I have

no idea why they help, but they do. Pain meds...antispasmodics...muscle

relaxers...nitro...NOTHING has helped me outside the suppositories. Might be a

route worth considering.

>

>

>

[Guest guest]

Jane wrote:

>

> ... Our GP is looking at other pain relief options but is struggling

> to know what to do.

> Can anyone suggest anything?

>

People with achalasia have pain for different reasons so it will depend

on what is causing his pain. There may be more than one cause.

There could be:

neuropathy pain,

hypersensitivity pain,

esophagitis pain,

pill esophagitis pain,

esophageal ulcer pain,

esophageal spasm pain,

lactic acid heartburn,

gastric acid heartburn,

food irritation pain,

esophageal distention pain,

stomach pain,

non-achalasia related pain.

Low dose antidepressants work for many types of chronic pain. There are

specific medication for muscle pain, others for nerve based pain, others

for esophagitis, and ulcers, others for acid problems. Then there are

medication for pain in general. He is probably going to have to

experiment to find the right combination for him. Even in each type of

medication some options may work better than others or not at all. What

works, or not for others, may not mean much for him. Hopefully he will

have a doctor that won't just give up quickly.

Don't forget the non-achalasia pain possibility. Achalasia pain can mask

a lot of other problems, so at least the usual other suspects may be

good to rule out.

notan

[Guest guest]

 Hello

 

I too suffer from severe chest pains. One episode lasted 13hrs. Although the

swallowing is a nightmare i find it impossible to cope with the chest pains. I

take 6-8 tramadol each day but ime not sure if they work 100%. If the pain comes

on then it would b great to have something that would work instantly. I dont

think any person can fully understand the pain one feels unless they suffer with

same condition. I hope that when i get the op my pain will lessen or even better

disappear.  

________________________________

From: bigbrillohead <imahockeymom@...>

achalasia

Sent: Wednesday, 16 May 2012, 18:38

Subject: Re: Pain relief for NCCP - Any suggestions?

 

Was morphine the first/only thing they've tried? Have they tried PREVENTING the

pains at all, or just treating them when they happen?

I'm going to repost my standard " NCCP " post, and it's also available in the

FILES section of the website. It's been around for ages now, and a lot of

people have found it helpful.

Debbi in Michigan

>

> Hi,

> I joined this group recently to support my husband. He was diagnosed with E

about 25 years ago. Back then they cut the muscle close to his stomach and made

a new flap to prevent stomach acid coming back up. A few years later they cut

some other muscle to allow food to pass more easily into his stomach.

> As these ops were carried out a long time ago, they went in through his chest

which has left lots of scar tissue which has prevented any further ops.

> My H was told he was at end stage E in January this year and there was nothing

that could be done to help him. If he started losing weight then they would

have to look at removing his oesophagus replacing it with some of his intestine

and lifting his stomach but this would be as a last resort. Fortunately with a

combination of milkshakes for breakfast, soup for lunch and sloppy stuff for

dinner, supplemented by lots of chocolate and biscuits (cookies) he's been able

to maintain his weight for now. He also takes esomeprazole (Nexium)and gaviscon

extra.

> The real issue is how he manages the severe pain that his experiences pretty

much every day relating to NCCP. Currently he's taking slow release morphine

twice a day at a fairly low dose (20mg in total) but it's not really helping.

His GP has contacted the Consultant to ask what other pain relief he could

suggest. The Consultant has said there isn't anything they can suggest and they

don't understand why H is getting so much pain. This is a consultant at a big

teching hospital (Addenbrokes in Cambridge UK) Our GP is looking at other pain

relief options but is struggling to know what to do.

> Can anyone suggest anything? I have got some ideas from some other posts but

I thought I'd ask again if that's ok.

> Thanks

> Jane

>