Posted 2/8/2013 7:38 PM (GMT 0)
Day 1
Gastropsaresis
I had a 'normal gastric function (motility)in my build up tests.
The surgical team said the Vagus was OK.
Time will tell.
Drinking more water, eating bran/prunes and Fibogel.
Changing dressings today with a kit from the hospital.
3 Small incisions about an inch long and one in the belly button.
LINX device not very noticeable, no pain.
Meds Nexium 20mg bd. Gaviscon Advance 4 times daily after meals
Regards JPT
JPT LINX REPORT DAY 5/6
Hi
Today I didnt think about the LINX at all as it didn't make its presence felt.
Yesterday I got a bit cocky and started to shovel the delicious Prawn Stir fry meal prepared by my daughter
Big mistake I created a tail-gate effect of continuous food in the oesophagus instead of individual bolus's
Bad move.
Fixed with a little time and sips of water.
Learnt the lesson. 'CSP' from now on and no problem.
CHEW-SWALLOW-PAUSE.
Digestion still out of whack but not painful.
Wound small and healing well.
Incidentally I haven't mentioned LPR Asthma that I've had for around 24 months.
That's because I don't appear to have it at the moment!!!.
Thought you may be interested in this.
I'm taking anti cancer supplements to protect the laryngeal tissues after the hammering from pepsin over the
last 24 months.
Oregon Dried Black Raspberry Powder, blended with No-fat yogurt and honey. A smoothie that heals tissues and tastes great.
Hey those Oregon farmers aren't paying me a cent ...honest
''According to a research study reported by Cancer Research 2001; 61: 6112-6119, rats fed diets of 5% to 10% black raspberries saw the number of oesophageal tumours decrease by 43% to 62%. A diet containing 5% black raspberries was more effective than a diet containing 10% black raspberries.''
Regards JPT
JPT LINX REPORT DAY 6/7
Hi nothing much to report.
Digestion system now seems to be working OK
Lost a few more pounds, now only 7lbs off my target weight to get under 14st.
That will be a loss of nearly 2st over the last 6 weeks.
A side benefit of the no-fat/high PH diet.
All final surgery dressings removed.
I cannot see the scars!!
only a little pin hole or two where a stitch was.
The butterfly sutures and the surgical team did a good job.
There are still a couple of dissolving sutures in the belly button.
-Good news for all GERD/LPR beauty contestants.
Found that cold fizzy drinks are a little bit tricky.
Very slightly warmer liquid is better. And not fizzy better still.
The LINX lets me pass the extra gas back up but in more of a bubbling fashion rather than a full belch.
Sometimes it is trying to open to let stuff down while gas is trying to come back up.
My LES is still there and working to some degree so I have two operational sphincters.
Got my fingers slapped for giving advice in another thread 'Acid in the throat' I was told it looked like I was diagnosing
Sorry about that, just trying to help someone who I recognised as an obvious LPR sufferer but they had no idea what to do.
I have now inserted a health warning at the bottom of all posts to protect the innocent.
Feeling well enough to eat anything
Went to the FA Cup Final at Wembley yesterday.
Had a great time, my team Chelsea won 2-1 and I had a good result also with a full chinese meal!
Regards JPT
JPT LINX REPORT DAY 7/8
Well a week after the LINX surgery.
That went quickly.
Went to work today in my London office.
Have been working from home the few days after the op.
Showed my 'scars' to colleagues who couldn't find them!
I do have a stich left in my belly button which I think is meant to fall off on its own.
Bolted a chicken sandwich which got a bit stuck
Got hiccups.
Fixed with sips of water.
Dry is not a good idea with LINX
A drink while you eat is best or eat things with any kind of dressing
it just helps things slide down.
The trouble is I keep forgetting I've got it!
then i crash the food down without thinking.
Doh! must think 'CSP' CHEW SWALLOW PAUSE.
Yesterday had a full roast dinner and desert...no problems
Breathing is still good and I have done a bit of testing
by eating chocolate & ice cream and a glass of wine (not together)
without negative consequences.
So I think my existing Pepsin levels may be decreasing.
Won't do a Pepsin test for a few more weeks though.
Regards JPT
JPT LINX REPORT DAY 9/12
Getting used to chewing well, swallowing and pausing. CSP
My breathing is still good and hopefully that means the existing Pepsin is being controlled
and new Pepsin being prevented
by my LINX device and continued diet regime which is....
My daily routine.
Wake. take Esomeprosole 20mg 60 mins before eating
Cup of tea decaffeinated.
Breakfast. cereal or porridge.
Vit D & Multivitamins
Gaviscon Advance 30 mins after
Lunch. Sandwich or Salad very little spread
chicken or tuna etc.
Gaviscon Advance 30 mins after
Take Esomeprosole 20mg 60 mins befor dinner
Dinner. Anything from the Dr Jamie Kaofman cookbook
or derivative dishes that obey the high PH/low fat concept.
Fruit. Bananas or Pears
Gaviscon Advance 30 mins after
Glass of water with Powdered Oregon black Raspberry.
(reputed to heal cancer tissue from reflux)
Sinurinse (NeilMed)
Sodium Bicarbonate gargle. (neutralises Pepsin at PH-8)
Gaviscon Advance before bed.
This is typical not the same every day.
Dont have my digestion completely back on track yet after surgery.
experiencing some constipation and low left discomfort like IBS
pain, which I have had for many years.
Regards JPT
JPT LINX REPORT DAY 13/14
Hi
Difficulty last night with dinner.
Had eaten all day with no problem
but at the evening meal everything seemed to get stuck.
The meal was Chicken with a slightly spicy sauce, mushrooms, rice & peas.
It got to a point where nothing seemed to be going down
and I wanted to bring some wind up at the same time.
A stalemate and pretty uncomfortable.
There is also a strange vomit like reflex which is not vomiting but
you bring up lots of saliva/phlegm. (sorry for the squeamish amongst you.)
Took about half an hour for this to abate.
To add insult to injury it produced hiccups as well.
This morning I was a bit scared of what might happen at breakfast.
Beans on toast, poached egg on toast, mushrooms, coffee.
No problems
My best guess is that rice is difficult.
It has bulk but no weight and eating forkfuls of it
bulked out the esophagus without the weight required to open the magnets.
Any thoughts from LINX people welcome.
Rice is off limits for a while.
Regards to all JPT
JPT LINX REPORT DAY 15/16
Hi Guys
Good luck Beach Girl. Happy to share any info with you.
The answers to most of your questions are on page 1/2 of this thread.
As for salads and vegetables or pills no problems.
You must remember that the LINX is a stranger in your body and will take
time to be accepted and tolerated.
There is a little discomfort rather than pain.
The thing is you need to eat normally to make sure it opens and closes fully
or it will end up with less than optimum efficiency when fibrous tissue eventually surrounds it.
So from my experience try to avoid too much light sticky stuff like rice and chicken
Eat normally but remember CHEW, SWALLOW, PAUSE
don't just keep shoveling. and everything passes through OK.
They say there is a curve of discomfort that peaks at 6 weeks post op where the
discomfort peaks then tails off to minimal.
I'm only at just over 2 weeks.
I went for LINX due to LPR Asthma and Pepsin in my airways
So far I've had no breathing issues since the LINX was implanted.
Have tapered off the Gaviscon a bit because i forget to use it.
Speden
Hi I've tried the water thing but with a stuck situation it seems better to wait it out.
I think your thought about warm drinks is right
It does seem to help.
Good day food wise. nothing stuck
Breakfast: raisin Bran Flakes, Milk, Tea, Pear
Lunch: Chicken & Fat free mayo Sandwiches
Mid afternoon; Pastry
Dinner: Cottage pie, Carrots, Blueberry Yoghurt.
No Problems
Best Regards JPT
Note: I am not a doctor. The opinions I express are my own
and do not purport to replace those of a medical professional.
Info on LINX:
Hi thought you may like to read the UK LINX post-surgery diet advice:
Following your LINX™ surgery, you may experience some discomfort or pain while eating (dysphagia
This pain can be caused by your body healing as scar tissue is formed around the device.
This is perfectly normal and will resolve by around 12 weeks.
Dysphagia can also occur because your body is adapting to having a normal functioning Lower Oesophageal Sphincter (LOS).
The LINX™ System is designed to strengthen your body’s resistance to reflux, which also means it is has to learn to open and close to accommodate swallowed food.
Dealing with Dysphagia:
To prevent dysphagia, eat frequent meals throughout the day and drink water before and during meals. Taking smaller bites of food and chewing your food thoroughly before swallowing will also help.
If you find that food gets stuck whilst eating, take a drink of water or something fizzy. This should resolve the problem but if it persists, call your LINX™ Surgeon or support team.
It may be tempting to eat soup and other liquid based foods, but it is important to also eat bulky foods, as they ‘train’ the LINX™ device to open and close normally.
Typical Experience with Dysphagia:
Dysphagia occurs in many patients and peaks at around 6 weeks. This will resolve itself after around 3 months.
Regards JPT
Approximately Day 20
Having some trouble with over production of saliva.
Not sure why, but esophagus seems full of it most of the time now.
This has come on since surgery.
Went to my dentist for a filling and was told my mouth was 'flooding' with saliva.
Needed two suctions to keep the site clear.
Saliva is apparently controlled by the vagus nerve and any damage to the parasympathetic nerves
can cause overproduction of it.
Also a lump in the throat sensation and trying to clear it all of the time.
The slight discomfort from the new device continues with the odd 'stuck' situation.
My breathing is much better and has ceased to be a problem.
One problem is now replaced by another.
AXA PPP are paying for my surgery to the level of a Nissen Fundoplication.
The pain from the 'stuck' situation is unpleasant and uncomfortable.
You have to try a semi vomit reflex to get things moving.
It takes around 10/15 mins to get back on track.
Fizzy liquids are a problem as burping isn't as easy as before.
Liquids are important before and during eating.
Regards JPT
JPT LINX REPORT DAY 23
Hi Beargirl and all
Interesting that you had the saliva/phlegm problem too.
I think because the device is pretty effective at stopping everything coming back up
it does need something with mass to open it and let let stuff down.
I'm putting the saliva in the same group as rice.
They don't have enough mass to naturally open the device.
So you get a build up.
Eating or drinking clears it for a while.
Glad to hear your problem cleared up Bear Girl, I will wait and see.
The LINX must be working as I don't have breathing issues and have tried a few Pepsin trigger foods
like chocolate etc without problems.
I get less food stuck now. Getting the hang of it better and maybe the tissue around it is starting to form.
Hope Beach Girl is well enough to post soon. There is a lot going on after surgery.
(is anyone else getting name confusion? Bear/Beach etc.)
Anyone else with a newly fitted LINX?
I defy anyone to find my scars now. Even I have a job
Best Regards
JPT
JPT LINX REPORT DAY 28
Hi all,
Well its been a month since I had the LINX fitted.
The first thing to say is that the reason I had the LINX was to stop the aspiration of Pepsin
into my airways that was causing me breathing problems and damaging cells which have no defense against it.
So far this has been achieved and from my point of view its a great success.
In the post surgery period there are some things to get used to.
You must CHEW, SWALLOW, PAUSE this helps to prevent a stuck situation.
Some light fluffy things are problematic chicken /rice etc.
saliva seems to pool above the device, any food or water clears this.
Drinks are a good idea before during and after eating.
Don't eat too late and make sure you wash down anything left in the esophagus before going to bed or you may get a minor 'wretch' during the night.
The device takes a while to be discomfort free as the area surrounding it will eventually produce fibrous tissue with less sensitivity.
The peristaltic wave in the esophagus is apparently changed over the bedding in period and you have to be patient while this process takes place (against my nature)
Dr. Ashton told me today I have 13 beads on my device and that sizing is checked three time before the number is confirmed.
If you are a new LINX patient please post on 'The LINX Club' also to share your info.
Best Regards JPT
JPT LINX REPORT DAY 40
I agree with Beargirl
The device is not perfect...what is??
The question is how to fix the problems we all have with the least side effects.
The LINX ticks a lot of those boxes and is removable if you don't like it.
Everything else is a one way ticket with the possibility of redos.
The LINX doesn't get looser over time and should work for a lifetime.
The absence of LINX users here is probably a good thing as they are getting on with their lives and not posting problems here.
I know 'Slicer' is fine and he hasn't posted in a while.
I am here for long term reporting to give an honest account
of my journey, not all of it can be great.
Typing this with no breathing problems and just had breakfast with no problems.
I am going to have 3 (consecutive days) EBC tests (exhaled Breath Condensate) in the next few days
to check Pepsin levels in my airways.
This will give me a clear idea of how much the LINX has done to shut down the
aspiration of Pepsin in my airways.
I dont expect it to be totally gone as Pepsin hangs around in the cells for a while
my guess is 6 months.
Best Regards JPT
JPT LINX REPORT DAY 47
Good News
I just had my 3 Pepsin Tests (Exhaled Breath Condensate/3 consecutive days) back from the lab.
Rdbiomed in Newcastle UK.
All three were zero for Pepsin.
This means the LINX is working well.
According to Professor Peter Dettmar who supervises the testing,
it proves that there is no reflux into the airways
as it would always carry a Pepsin component.
This result would indicate that my LINX is not just performing well
it is even better because I have been back on a normal diet with
chocolate, tomatoes, and all the reflux trigger foods that I thought that might
cause problems.
I will now see my GE and begin the process of coming off Nexium 2x20bd
to see how that changes things.
This is positive news for people with 'Atypical' airway symptoms who are evaluating LINX.
Best Regards JPT (LINX) [img]/community/emoticons/smilewinkgrin.gif[/img]
JPT LINX REPORT DAY 62
Just returned from holiday.
No issues with LINX.
Airport people will give you a personal search if you don't want to go through the electromagnetic scanners.
I have been told it does not affect the device.
Felt the device opening on the first couple of swallows then nothing.
Getting near to the 9 week point and everything seems to be settling down.
I am getting some breathing issues but that could be because of
Pepsin damage over the last two years of LPR.
As I said before my recent Pepsin tests were negative so presumably
there is no new Pepsin in the airways.
Seeing my GE this week to start the process of coming off PPi (Nexium)
willl let you all know how it goes.
Best Regards JPT
JPT LINX REPORT DAY 70
The LINX has become hardly noticeable now as long as I don't take liberties with the first couple of swallows and chew all very well I can eat anything without problems.
If I get a 'stuck' situation I recognize it as I get hiccups.
I know what to do now and that's to have some small sips of water and wait.
After 5 mins I am back on track.
The good thing is that it reminds me its working.
The asthma like symptoms are there but not as bad as before surgery/Koufman.
There may be some permanent damage caused by 2 years of not understanding
how 'airway reflux' as they now call it works.
A lot of my knowledge has come from the web and I am surprised how little is known
about the pulmonary dangers of Pepsin/acid/bile exposure by the medics.
My diet is now completely normal. Any food/alcohol etc. but I continue theraputic stuff to aid my recovery to be as good as it can get.
I gargle with sodium bicarbonate daily
I take Gaviscon Advance after meals
I take tumeric/oregon black rasberry powder for their antioxident cancer defending properties.
Saw my GE this week.
We are going to try to come off PPI Nexium slowly.
Here's the titration plan.
At Present: AM 20mg PM 20mg daily...then
Two weeks of: 10mg AM 20mg PM daily
Two weeks of: 0mg AM 20mg PM daily
Two weeks of 0mg AM 10mg PM daily
Alternate days 10mg PM
Will let you all know how it goes.
Best regards JPT
JPT LINX REPORT DAY 93.
Sorry I have been off-line for a while.
Been getting involved in the Olympics and went to the opening Ceremony
Wow what a show!
I guess the reason I could enjoy it was that my health issues seem to be
improving.
Nearly 100 days after surgery and I am no longer feeling the LINX at all and have not had a 'stuck' situation for some time.
For me the reason for having LINX was to stop Pepsin coming up into my airways
and causing LPR Asthma. My Pepsin 'exhaled breath condensate' tests are now negative
I still have some airways issues but far less than before.
I am hopefull the situation is improving all the time.
But there could be some permanent damage.
Started to come off nexium and am now on my second week of 10mg in the morning
and 20mg in the evening.
The program goes to zero over many weeks, fingers crossed.
Don't think I would have got to this point with LINX.
I feel bad that I am progressing when some of you guys are not getting the
benefit. Feel bad about that. Wish there was something I could do!!!
Best wishes to you all.
Regards JPT
Final post of Recovery Journal:
Hi,
As it seems this thread is no longer of interested to anyone
I will sign off and wish you all the best in finding a solution to the problems
that GERD and LPR brings to us all.
I am feeling a continued benefit from LINX with no pain, and no longer feel it in my body.
I am gradually titrating PPI use without rebound.
My issues are not completely resolved but I am a very long way from where I started.
Love and best wishes to you all.
Hope this diary has helped a few people.
Still around if anyone needs me on 'The LINX Club'
JPT