Re: Re: Complications heller myotomy /J-Tube

December 9, 2008

Hi Steve

The pain that I have starts slowly then builds up until it reaches a 9 on a

scale of 1 to 10. It is an intense tight sort of pain. When it gets this bad I

can't do much only hug myself and rock backwards and forwards until the pain

eases a few hours later. It really hurts when it gets bad like this and if I do

not take any painkillers quick enough then I have to wait until it passes. As I

have said, I have a J-Tube for overnight feeding and there are problems there

also. There is a lot of yellow bile leaking out of the stoma hole around the

J-Tube and it litterly drenches the dressings that I use. I have to change the

dressings 3 times during the night and sometimes 2 times during the day. The

bile leakage is worse during the night when I have a feed. Thanks for your

support.

________________________________

From: steve <stevenakamichi@...>

achalasia

Sent: Tuesday, December 9, 2008 9:55:32 AM

Subject: Re: Complications heller myotomy /J-Tube

Dear ,

I'm sorry to hear of your conditions. They sound more awful than mine.

In another way, it's reassuring that there are people in this ~10%

treatment resistant group who post here.

what is the quality of your pain?

Is it intense, throbbing, sharp or localized? Do your meds help? If so

by how much (1-10 w/o.....1-10 with).

Regarding the despair, things probably won't get better; it's just

finding solace in accepting what is. Don't get stressed-out

needlessly. Things won't get worse. And a properly administered,

monitored and practiced chronic med treatment plan can stabilize the

debilitating aspects of pain, allowing you lead a more active life.

Don't let medical practitioners or others paint opioid painkillers as

some horrible agents of evil, over which you will fixate and have

escalating doses. These cases are rare. When a titrated dose is

reached (and it's different for everyone else), you become tolerant to

possible " euphoric effects " and much less so for analgesic effects. In

fact, once the proper dosage is titrated, pain can be adequately

relieved for a very long time.

The J-Tube? what are the complications of that?

-- In achalasia@grou ps.com, Hulmes

<christine.hulmes@ ...> wrote:

>

> Hi Steve

> Thanks for the understanding thoughts. I am in that 5-10% that still

have problems with pain. I had the ectomy with the gastric pullup in

October 2004. I had 7 dilatations since and still I have problems

swallowing with pain. I can swallow 3-4 spoonfulls of soft food then

the pain and spasms kick in and cannot swallow anything else for a

minimum of 4 hours even liquid. I am on liquid pain killers and

despair that things will not get any better. Xmas is in a few weeks

and I am not looking forward to it at all. I am seeing a Gastro

Specialist on Thursday for a chat. I may have severe spasms in my

little bit of Oesophagus that was left in after the ectomy and it is

this portion that is causing me painfull spasms sometimes up to 15

times a day. What little motive I have for swallowing flys out of the

window when I try to eat. I do have a J-Tube for overnight feeds and

am 95% dependant on this. Some Xmas I'll have. Thanks for voicing my

inner feelings in your

> post, now I know that I am not alone with my post ectomy

complications. Thanks.

>

> ____________ _________ _________ __

> From: steve <stevenakamichi@ ...>

> achalasia@grou ps.com

> Sent: Monday, December 8, 2008 8:38:06 AM

> Subject: Re: Complications Years After Heller's Myotomy?

>

> Complications?

>

> you betcha!

>

> First there is always the possibility of perforations, and permanent

> post-surgical conditions (i.e., PAIN), which you may discover that not

> too many doctors will treat effectively.

>

> Certainly, the fundoplication can reduce acid flare-ups; but its

> function to 'strengthen' the slitted LES can be counter-productive. In

> my case, it tightened the LES juncture up even more than it was

> previously.

>

> You will be left with a scarred, ______-ed up sphincter, which cannot

> be undone.

>

> Your options will be minimal.

>

> Your GI will then probably refer you for more radical surgeries, which

> are great ways for your GI to get rid of you and convenient methods to

> supply bonus bucks for the surgeon.

>

> Basically the GI approach is always for more surgery.

>

> And since achalasia is a little understood condition, you may find

> doctors know less about post-surgical conditions than you will. (ex:

> once i was given a drug for 'neuropathic' PAIN. That was BS).

>

> *Not ONE procedure I have had has helped my achalasia in any

> significant way. In fact the fundoplication made the swallowing and

> pain ( " spasms " ) worse. It isn't just the spasms, but persistent,

> long-lasting pain.

>

> The acid-reflux isn't nearly as bad is was when the first achalasia

> symptoms hit me 30 years ago. Big deal. The trade-off for acid reflux

> relief is chronic pain

>

> And sorry---multiple Botox injections and calcium channel blockers

> were absolutely USELESS. And acupuncture, and...

>

> In a pool of people who have these operations, 80-90% receive some

> form of relief. Not me.

>

> Do you know how it is, after having some surgery or a procedure, when

> you are asked to swallow something, and you feel the SAME? You are

> told you feel so much better with time, but don't. You realize your

> body has been raped for no perceived benefit.

>

> Or when PAIN is just some unfortunate side-effect that these doctors

> would choose to avoid acknowledging or even treating???

>

> Bringing up possible 'complications' of a heller myotomy/fundo is

> something I wished I had investigated further.

>

> If you're like the majority, you should be fine. However there is a

> small group of us resistant to all the standard treatments.

>

> In those latter cases, with the heightened complication levels, and

> 'therapeutic surgical failures,' additional surgery is a risky

> proposition.

>

> Probably the worst complication you may experience is a lack of

> understanding of what bothers you the most.

>

> A better question you might ask is, " what if i end up in 5-10% group

> that doesn't benefit from all of the traditional methods mentioned on

> this forum? "

>

> We don't hear much about that. Usually, the typical comments are: " Oh,

> I fear going to the hospital [like that's some big worry...], " and

> " After surgery, I feel so much better. Life is great. I can eat things

> I haven't had for a long time. "

>

> These things will not occur in all cases. Be prepared for that.

>

> Sorry to rain on your day, but it's time for some pragmatic realism

>

> >

> > Hi,

> > I had my Heller's Myotomy with Nissen Fundoplication in August 2003.

> I have had

> > relatively few problems since then, except for the occasional

> esophageal spasm and

> > occasional nausea (the bouts of nausea and dry heaving have greatly

> reduced over time).

> > Of course, I still drink plenty of fluids when I eat. About five

> months ago, I started getting

> > what I thought was reflux. The pain has progressively gotten worse,

> and I am now 15

> > weeks pregnant, so I thought it was pregnancy-related reflux. The

> pain is at the base of

> > my sternum---very strong----kind of resembles spasms, but not

> really. It is a sharp

> > ache.

> >

> > Last week I was in so much pain! I was working, and in less than 12

> hours time I took 30

> > Tums, a Prilosec, and a Zantac (the Prilosec and Zantac were taken

> within two hours of

> > each other). I finally got some relief, but I didn't feel well all

> day. I talked to my midwife

> > and explained to her what was going on, and I talked to a few of my

> friends who are MDs

> > to get their thoughts. Some are at a loss (since they are not GI

> specialists, rather critical

> > care specialists) , and others have suggested it could be a

> complication from my surgery--

> > --possibly my stomach is turning on itself? I don't know, they

> don't know. They don't

> > think it is reflux, and I have been referred to a GI specialist. I

> was just wondering if

> > anyone else has had problems years after their surgery.

> >

> > I am kind of nervous when I think about the possibility of having an

> upper endoscopy

> > while being pregnant---I don't want to hurt the babe.

> >

> > Thanks,

> >

>

December 9, 2008

Hi , hi Steve,

I understand where you both are coming from and indeed you are one of

the rare cases here on the board where things seem to fail over and over again.

But honestly I really believe that what's going on with you right now is a true

lack of medical care that you should have been given straight after your

-ectomy. They haven't treated you right, of that I am convinced when reading

your posts. For that reason I honestly don't understand why you keep seeing

those docs and don't change hospitals. You've been through enough and needn't

put up with all this crap.

You never sounded bitter to me and that's a good thing. On the other hand when

reading your posts I read you lose hope. That's not OK, . No matter

what, never lose hope. Hope is life. Hope is what you need. Hope is the thing

you should allow yourself to feel and have. If you have hope, if you have faith,

you are willing to fight to reach your goal. I so much hope you will be able to

regain your faith and hope.

Many times in my " achalasia carreer " I had to fight to keep my faith in a good

outcome. It brought me where I am at now, though that might not sound too far

for those that only see the negative side of my post -ectomy experiences, I

know.

But I am only 8 months post surgery and they see how I am doing right now and

they act. They try to help and referred me to the most specialised G.I. in our

country (thank goodness he's in my own Utrecht hospital!). I have every reason

to hope and believe things will work out OK.

I know from experience how frustrating it is when things don't seem to work over

and over again. When you run from infection to infection, need to hook on to

that tube every night and cannot eat though you are hungry. But I also know from

experience that things won't change if you don't fight to change them. I am not

saying you don't fight, as you fight the battle of your life to get through the

days for as far as I can read from your posts, but you should fight to get the

right treatment. Things can improve, of that I am sure. I am also sure you're

not in the best possible hands...

As for Steve, I believe about the same goes for you. Though you haven't yet been

through the -ectomy thing and I don't think you will be prepared to ever undergo

it, I still think you can be helped as well. I am convinced something can be

done to improve your condition. Use the frustration you have towards your

achalasia and your doctors in a positive way and get that one treatment that

works for you. Find yourself that one doctor that has great experience and that

deserves your faith. Give them a chance and give yourself a chance.

Life is worth it.

Achalasia isn't worth throwing your life away.

Isabella

________________________________

From: Hulmes <christine.hulmes@...>

achalasia

Sent: Tuesday, December 9, 2008 2:32:11 PM

Subject: Re: Re: Complications heller myotomy /J-Tube