My EndoStim journey

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321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 1/28/2017 2:36 PM (GMT -6)   
I am going to write about what I've been through - your posts have helped me enormously, and I hope my journey can help you too.

It all began for me in the 1970s, when I was young. For as long as I could remember, my late father most evenings told us he had "heartburn", and would have a glass of water and Bisodol, an antacid. Funnily enough, just now and then, I experienced the same at that time, and also reached for the Bisodol.

Many years later, in the 2000's, my late father one summer was unable to eat a pizza we'd just ordered, he seemed to be struggling to swallow and catch his breath. He later went to the hospital, but they said it was just indigestion, and gave him Gaviscon or something similar, but this kept happening to him and in the end he was referred to a clinic to have some tests. It was so cold that day, my dad was gone what seemed like an eternity, and my back was playing up. I wondered why it took so long, but when I saw an oncologist nurse sat beside him, I knew it wasn't looking good. They told me he had to have chemo for his oesophagus. Unfortunately though the first course of chemo didn't work, and my dad didn't make it.

Since the 2000's, I noticed my chest kept making these weird creeking sounds, like a clip out of a Laurel and Hardy scene in a haunted house with a massive door opening slowly, and that indigestion was happening more as time went on with me. Alongside this, I was diagnosed with adult onset asthma, and in addition to that, was told I either had vocal chord dysfunction/hypersensitive airways/chronic cough syndrome, oh, and the Ear, Nose & Throat team performed an endoscopy and informed me I had "acid reflux... rather a lot of it". At about that time, one day I was eating the most delicious meal, and was hungry so I was really enjoying tucking into it, but suddenly I just could not swallow. Somehow the actual action of swallowing wasn't happening. This horrible experience happened again, this time with an espresso, which took me nearly 2 hours to sip/drink.

So they referred me to a gastro team, & after months of waiting attempted to give me a barium swallow. YUK!!! But luckily they were very patient and my 2 pathetic slight swallows were enough for them to see acid reflux in full force.

Fast forward months, and the gastro team admitted me for an endoscopy under sedation, from which a small hiatal hernia was diagnosed.

After countless out patient appointments and an inability to tolerate famotidine or any ppi's, and an urgent referral to another hospital, which turned out to be many more months down the line, to be given a general anaesthetic for them to put a 48 hour bravo transmitter inside me. Which again showed up severe GORD (gerd). Another wait back to the original gastro doctor. Frustration.

At least 18 months ago possibly longer, they informed me I might be a future candidate for EndoStim, and then I found out thanks to the internet that a free trial in the UK had been and gone, almost at the end stages. Given their view though, I began to explore Endostim, alongside Stretta, Linx, and surgery. As I already had swallowing problems, for me most of these were out of the question as far as I was concerned and the doctors agreed. But my main concern was I did not want to end up suffering like my late father did, something had to be done at the first opportunity, before any pre- condition started to show up, as I was unable to take the regular ppi tablets, and was suffering with acid reflux daily, which in turn was aggravating the asthma and I had many bouts of laryngitis, nausea, chest tightness, swallowing problems, acid reflux, head down the toilet without actually vomiting, and sinusitis too. It got so bad that no UK over the counter meds helped at all. Luckily for me a kind friend who visited Europe told me about Maalox there being much stronger in contrast to the weaker strength Maalox you get in the UK and bought loads of boxes back for me. While not completely effective I was totally reliant on them but when it got to the point where not even 8 a day was working, something else has to be done.

Between the last 2 years it got to a point where the gastro teams wanted to help but their hands were tied owing to no more trials on the horizon and no funding for them to offer it to patients. In the end I thought enough was enough and after being referred to various surgeons in the UK I decided EndoStim seemed to be the best option for me - the one with the least chance of swallowing issues afterwards, a good success rate, it having been applied in other countries for a good few years now, me having attended N.I.C.E. meetings where a big decision was finally made about a year ago that according to the UK it was safe to be used for research and trials here in the UK, and all posts about it here, and elsewhere about it online.

Let me tell you something. I was informed last year that a free trial of EndoStim is going to be happening in a UK teaching hospital at the beginning of 2017 and that candidates were going to be contacted (by now). Has anything happened? No. I contacted everyone and everywhere I could think of to find out where, when, who. But not one person has got back to me at all. And, I thought, just my luck if I wait goodness knows how long, I could still be told I might not fit a criteria just my luck. So that's why I thought ENOUGH!!!

A week ago in Leicester in the UK, I had the 7-year EndoStim implanted and my hiatal hernia fixed at the same time.

I was able to eat a light breakfast at 7am, drink water up to 10am, and at 4pm that day taken to the theatre to have surgery under general anaesthetic. They also carried out an endoscopy at the same time (all clear thank god).

They said the surgery went very well, and to expect some gas/wind pain for a few days in the shoulders. Which I am getting, and am taking prescribed pain killers for. I had keyhole surgery and for the hernia dissolve-able stitches. Stayed in hospital for 2 nights (as I have another health condition) and the hospital were obliging.

Was out of the recovery room and back in my hospital room by 7pm or there abouts. They said only water that night, with injected pain relief and other meds, and the next day "slops" only. The next day I was able to eat a small amount of scrambled egg, and some soft Weetabix cereal, and surprisingly at lunch I ate a small portion of cottage pie (mince meat with mashed potato on top), very soft veg, and an ice cream. I was allowed decaffeinated coffee. That night I had a jelly.

Next morning I had trouble eating Weetabix., it felt a bit odd when swallowing. they said that was because f the hiatal hernia swelling. So I have only had really soft things, very small amounts, I'm treading carefully.

They said be as mobile as you can ie don't spend all the time lying in bed. I wore hospital stockings and told to wear clean ones for a few more days.

Have since discovered some things now seem to taste disgusting, probably because of the drugs in my system. but I'm happy to be able to eat watermelon, and heavily soaked Kellogg's Rice Krispies.

The journey home and sitting upright provokes the gas/wind pain in the shoulder, so I'm taking things slow and used a blender to blend stews and cooked fruits up to a liquid paste. Small portions, lots of water.

They said the EndoStim will take 3 months to work, I will then have an out patients appointment with the surgeon. The nurse will change the dressings again in a couple of days. The dressings have been waterproof and the hospital got me in the shower the day after surgery in a wet room. That was nice.

So now its recovery time. Any questions I'd be happy to help, as I'll be posting every so often with updates and I hope it helps you too by reading them.

take care for now.

Post Edited (321lift0ff) : 1/30/2017 2:19:04 PM (GMT-7)


321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 1/30/2017 3:13 PM (GMT -6)   
... so more than a week later post-EndoStim, and I have to take regular strong pain killers for the trapped-in-the-shoulder-gas-pain, so spending the time mainly asleep as a result of the side effects of the pain killers, but lying down on one side does take the edge off with regards to the gas/wind pain in the shoulder.

Nurse came today to change dressings and said it all looks like its healing well (excuse the pun!!) In 5 days time all dressings can be taken off.

As I have to keep lying down/sleeping in bed, I was advised to keep the surgical stockings on for a few weeks. That's fine by me, I've got used to them now.

While my surgery was not part of a trial, I was very happy to fill in forms of how I was before. I understand I'll be reviewed every now and again over the next 5 years. Every little helps.

Sticking to soft, mushy liquidy foods, which is good because I don't feel like eating too much. I'm getting help to prepare everything as I'm not well enough to prepare the food myself. I never imagined blitzed meat and veg could taste so nice! But I was given a list of foods to avoid during the first few weeks including, not surprisingly, bread and crackers, anything rough or lumpy, breakfast cereals that don't soak properly like puffed wheat.

I'm being careful not to talk at all when eating, and I'm taking small mouthfuls. I'm still feeling a tiny sensation when swallowing food (because of post-op hernia swelling), so "small but often and in peace" are the name of the game to conquer that issue.

Oh, and as advised by a nurse, I'm drinking small sips of peppermint tea, she said it was good for pain, as well as digestion.

As it'll be 3 months or there-abouts before my EndoStim takes full effect, I'm continuing with Maalox as required, but so far haven't needed much. Before I was unable to tolerate ppi's except for the occasional pantoprazole, so am now testing that out by taking it every morning. No ill effects as yet.

that's today's update.

321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 1/31/2017 9:47 AM (GMT -6)   
oh my, a learning curve...

-got the carer to put cooked broccoli in the blender so it became like a soft paste. After that I felt very hungry and sipped soup, and had a couple of mouthfuls of the blended broccoli. I then got very bad hiccups.
As I usually used todo with hiccups, I swallowed some water. BIG mistake, because I ended up half choking, on what felt like to be broccoli that got stuck going down.
It was quite painful and hard to breath, but I took very deep breaths and sat down.
Phew, slowly the pain and blockage passed. What a relief!
Has put me off eating that broccoli - well for today at least - I probably ate too quickly without thinking of chewing carefully.
But the hiccups have stopped thank god, and I'll just sip the soup instead now, slowly!
phew!!!

still got very bad shoulder pain from the trapped gas/wind. Have been taking strong pain killers, but my doctor's told me to take amitryptiline (xcuse spelling!) alongside them, which hopefully I'll do very soon when the pharmacist can get them to me.

321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 2/2/2017 3:27 PM (GMT -6)   
yesterday I thought I'd tackle the blended broccoli again, with abit of minced beef.
I chewed each mouthful for an exceptionally long time, spitting out bits of cooked onion from the beef, and ate at a snail's pace, swallowing really small mouthfuls. It was a struggle, but I managed it.

thinking the worst was over, today I thought I'd try some Shreddies for breakfast but that was impossible as they didn't seem to disintegrate when wet very well. Gave up, and ate Rice Krispies.
Later today tackled some soup with cooked chicken that was grounded down to almost a powder. A bit of a struggle swallowing but I managed it.

Reluctant to think I'll be able to eat solids next week, I probably won't for a few weeks, so will carry on with the soft meals. Have lost a few pounds, don't mind about that.

but I do mind about the friggin' gas/wind pain in my shoulders, its still awful. continuing to take the prescribed meds, which ease the pain, but make me very sleepy and constipated.

I'm allowing time to have naps as part of my recovery. And I'm going to see if dried apricots, that are cooked and ground to a wet paste will be tolerated by the swallowing, and if so if it helps the constipation.

I have not noticed any of the creeky sounds in my chest happening, and I have not had to take any Maalox today. Wow, perhaps the EndoStim is beginning todo good things already!

small steps...

Post Edited (321lift0ff) : 2/2/2017 2:32:59 PM (GMT-7)


321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 2/3/2017 3:38 PM (GMT -6)   
well the good news is, I am able to eat the pureed apricot concoction, so hopefully that will help the constipation! And I have not needed any Maalox today either.

the not so good news is, I tried eating meatballs with that blended broccoli. BIG mistake... after just one or 2 v small mouthfuls of each, bad, bad hiccups, then a feeling like the food was stuck in between my throat and my chest. Deep breaths at first didn't help, I really thought I was going to throw up this time. But thankfully the feeling passed after about half an hour sitting next to the toilet bowl. I HATE throwing up and am ever so grateful that the food eventually went down and the horrid sensations passed. Phew.
I have now thrown all the blended broccoli away, and the meatballs too - either it happened because of the broccoli, or because there was wheat flour in the meatballs. Either way I ain't eating these again for a very long time!!!

Eventually had a scrambled egg, easier to eat without issues, and some of the pureed apricot mixture. And a couple of cups of peppermint tea. And a chocolate mousse! Breakfast today were the Rice Krispies, and lunch I only managed half a bowl of chicken soup, followed by a Greek yoghurt with honey.

Whats most refreshing are ice lollies as my mouth is soooooooooo dry from the amytriptiline.

Unfortunately I still have this horrible gas pain in my shoulder, so I'm still on the max dose of the pain killers and amytriptilline's. I do hope it will ease off soon, its really awful.

The nurse came today and took the dressings off. He said it all looks fine, but around the belly button where there are dissolvable stitches from the fixed hiatus hernia, he put a new dressing on for a couple of more days.

The cut where the EndoStim went is about 2inches long, and is about 2 inches away from my bellybutton, on the left side. It feels a bit itchy and I can see a bulge around it, but not like a matchbox, more like a natural curve you'd find on women who have never been stick insect waif supermodels! That I can live with, I'd rather have a slight curvy bulge than the acid reflux anyday. It will be interesting to see if this goes down a bit over the next few weeks.

Just gotta be careful not to wipe it after showering, just to pat the abdominal area instead.

Beginning to really miss biting into a roast chicken drumstick, but that will have to wait for a few weeks. After today's horrible episode I am sticking to liquidy things, and blended down meat that has no flour in it.

Post Edited (321lift0ff) : 2/3/2017 2:41:49 PM (GMT-7)


321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 2/4/2017 3:53 PM (GMT -6)   
lunchtime thought I'd have 2 scrambled eggs, but I was only able to eat a third of it, as it was becoming difficult to swallow/digest. Stopped there and then, slight hiccups which deep breathing helped.

about 2 hours later I tackled the eggs again, and was able to eat a bit more, but decided not to push my luck and didn't eat it all. Instead, had a pot of custard which went down really easy.

Tonight I blended up a beef stew so much it resembled ice cream. Did the same with carrots & swedes and was able to eat, incredibly slowly, carefully chewing everything so that it was pure liquid, only half of the meal. I then ate, at the same speed, some pureed apricots. The whole meal wasn't a normal sized meal but I am relieved to have been able to eat without any hiccups or discomfort.

The list of foods the hospital supplied that I could eat, doesn't really fit with what I am actually able to eat. I guess all our digestive systems and swallowing capabilities differ, there can't possibly be one list fits all.

But the blender and the grinder are helping a lot. And again, no Maalox required again today either.

That gas pain is still here, but a fraction less severe than a couple of days ago. Will continue with the pain killers as advised until it goes completely.

321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 2/5/2017 4:12 PM (GMT -6)   
spent most of today with hardly any gas pain in the shoulder, so took less pain killers, and this along with the pureed apricots mean I am no longer constipated!! hurrah!!!!!! lol (how weird it is informing the world about that!!!)

But tonight the gas pain in the shoulder is back so I'm now back on the pain killers, and I continue to eat only pureed foods, incredibly slowly.

I now have a good stock of pureed parsnips, leeks, carrots, swedes, apples, and apricots, with lots of soups. And cooked chicken ready to be ground to powder too, as well as nice things like ice lollies, custard, ice cream and jelly, and yoghurts, watermelon and mangoes too, and scrambled eggs here and there. Oh, and lashings of Rice Krispies!! My main diet before consisted of lots of chicken, but if powdered down is the only way I can eat it, so be it - don't want to resort to red meat all the time. Just a pity I can't digest porridge oats even when ground down. I miss eating better, but a few weeks won't hurt.

All dressings now off too. But to be on the safe side, the daily carers, daytime naps as required, and pureed foods, all remain in place.

and no Maalox needed today, and no feeling of being choked by food or the hiccups today either.

perhaps, perhaps, I'm on the mend....

321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 2/9/2017 6:35 AM (GMT -6)   
Its now been 2 and a half weeks since the EndoStim/hernia fix.

Yesterday struggled to eat scrambled eggs. I'm not that bothered, if it takes a while that's fine. I'll just carry on blending everything.

Since having to be on the non solid food regime, I have lost about half a stone/6 kilos. I'm okay with that too!

And no Maalox at all, though I'm continuing with Pantoprazole every morning, so far can tolerate it.

It's tempting to go back to normal physically, but simple stretching the left side of my body its still tender, as is the area, so I'm going very easy and continuing to wear jersey dresses and no jeans yet. But intend to go out for a short while later, fed up with staying in all the time.

321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 2/12/2017 3:12 PM (GMT -6)   
Almost 3 weeks since EndoStim/hernia surgery.

Struggling with foods that are not completely smooth, including eggs, beef, and even struggling to eat Rice Krispies at a normal pace, its hard to eat at a snail's pace when you have never had todo so before.

Not ready or willing to try hard/rough/lumpy/dough foods yet.

The gas pain keeps coming and going in the shoulder again, and at night my stomach area is tender, sometimes the tenderness wakes me up in the night, so pain killers continue but not as much as 3 weeks ago.

Eaten chocolate, and no acid reflux afterwards.

In the last 3 weeks I have only had 2 Maalox tablets, and that was only because a blended down lamb dish had wine in it, which was a bit rich.

So its up and down on the recovery front, and good news regarding hardly any acid reflux.

321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 2/16/2017 5:00 AM (GMT -6)   
Swings and roundabouts...

got fed up with having soups with ground chicken, bought a moussaka ready meal, which was soft and I was able to swallow it ok. And had an espresso from a café today. By the time the evening came the acid reflux feeling was as bad as it was before, took 8 Maalox in all last night (not all at once). So I think its back on the soup things, slops and blended/grounded things again & everything decaff again. Especially as they said it could take up to 3 months for the EndoStim to be effective. Its only been 3 and a half weeks. Guess I'm impatient.

Also, while the stitches did come away a few days ago from the belly button area where the hernia was fixed and I was healing well, last night there was blood around the belly button. Eventually a district nurse came, cleaned me up and put a new dressing on that area.
All other wounds where keyholes were are doing just fine.
Perhaps I just stretched/bent down too much without realising it, perhaps the thermal long johns rubbed the area too much, so its back to long jersey dresses and socks.

PuppetMan
Regular Member


Date Joined Mar 2016
Total Posts : 41
   Posted 2/17/2017 12:45 PM (GMT -6)   
Don't be surprised if the "referred" shoulder pain continues for several more months, slowly getting less. Took about 4 months for me, and I still get an occasional twinge. As I stated the string I started, the dysphagia will be the challenge if it doesn't resolve for you. The doctors are really encouraging me to keep on the low acid diet. Coffee, is my big weakness, so I have started getting custom roasts and making cold brew concentrate at home, since it is 67% less acid. (The bright side is it tastes better and can be used to make hot or iced coffee, as well as an ingredient for cooking.)
Even now at 7 months, I still have to be sure not to eat a large meal, and minimize acidic foods, although I am slowly eating larger meals. The swallowing is really the key issue to be concerned about, and give it plenty of time to heal. Mine progressed so far I am at risk for it being permanent. This is something not to mess with, so let every thing heal and try to be patient. Hopefully you will be better at that than I am.
In many ways your being in the UK is good. On my trip there in January I found the food to be a bit less spicy and much easier on the esophagus. (Not including the Indian food.)
Let me know if you ave any questions about the healing or things you experience. I seem to be one that "if it can happen, it will happen to me" type of person.

321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 2/20/2017 4:46 PM (GMT -6)   
Thanks so much PuppetMan. The 4 months of referred pain sounds awful, I hope mine won't last that long.

It's now been 4 weeks since my EndoStim/hernia fix.

I feel bittersweet today. A radio broadcaster here in the UK passed away today from C of the oesophagus he was 58 years old. So many similarities about his story remind me of how quick my dad went too, and it makes me sad, but also serves me as a reminder of why I chose to go through with EndoStim...

Yes, for me now its been 4weeks. And I struggled yesterday morning with Rice Krispies that had been drenched for a very long time. Went out the other day "for a meal" - hmpppfff, that's a laugh. Know what I ordered? Clear soup & mint tea - BORING!!!! I watched with envy the family next to me getting stuck into crusty bread & a massive Afternoon Cream Tea (2 big scones, thick cream and jam). So off I went and ate a chocolate ice cream, the next best thing!

So the nurse came back today, and changed my dressing, luckily where it opened/bled last week seems to be doing ok. I think I sat on a chair that was way too low for me, forcing me to bend too much. I still have carers coming here regularly to take out the heavy rubbish bags and help me with other awkward/heavy things.

Something else I've noticed, is that things taste different. Getting way too fed up with powdered down chicken mixed in soup, I ordered a curry Indian take-away, all the ones I like/thought would mash down well - chicken tikka masala, spinach potatoes, lentil dhal dip, a mild lamb curry and some mango chutney. Reluctantly, I threw the popadoms away. Mashed each dish up. But it all tasted so disgusting, I just couldn't eat any of it! I was so disappointed. It just didn't taste very nice at all, like it did weeks ago.
Same thing with tins of peaches or mandarins in fruit juice, also yoghurts with a fruit corner - they all now taste incredibly sour, ugh!
Very weird. And also with soft boiled eggs, they tasted very sickly to me whereas normally I'd love to eat them.

So, yay, once again its powdered chicken into soups. But I did manage to eat a shepherds pie (minced beef with mashed potato on top), with a spoon of liquidised cooked leeks. At least that's something a bit different.

But I am very reluctant to switch back to solids because if something soft like the Rice Krispies are still an issue, there is no point in causing more problems. Perhaps, like ChicagoGirl, I too need to give it about 8 weeks.

Its just a good job ground down cooked chicken livens up the bland boring soups! And thankfully chocolate still tastes fabulous and doesn't upset me, and the soups help things move along with the apricot puree & stewed apples!! And I switched to decaff coffees a long time ago. But intend risking espressos again soon.

I'm still on the pantoprazole. The main reason I couldn't tolerate other ppi' was they gave me what us British call an upset stomach. So far this has not happened and I think being on pantoprazole daily for about 3 weeks is a record for me. I intend to rely on them until 3 months pass since the day I had EndoStim surgery.

321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 2/28/2017 8:42 AM (GMT -6)   
It's now been 5 weeks since I had EndoStim/hernia fix, and I'm carrying on with pantoprazole, 20mg each morning.

No longer on amytriptilline for the gas pain, but the gas pain comes and goes and it's still horrible, but thankfully not constantly.

Last night, I was able at last, to eat something that hadn't been blended/pureed - soft chicken wings! I'm so pleased, they were much missed and very delicious. However, the soft cous cous was not so easy, so I will carry on with very soft foods, still avoiding bread, rough/hard items of foods.

And I sipped a caffeine free diet coke, which upset me. So I think I'll continue to lay off them until the whole 3 months have passed.

And both sides of my stomach are the same shape, you can't see a weird bulge where the endostim is.

Dee716
Regular Member


Date Joined Feb 2017
Total Posts : 55
   Posted 2/28/2017 9:51 AM (GMT -6)   
321 you have been through alot! I have only had issues for 3 months and seeing how strong you are makes me realize I have to be too. I hope you continue to do better and better!

321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 3/6/2017 6:31 AM (GMT -6)   
thanks Dee716, I hope you soon get reassessed.

As for me well, it is now 6 weeks since EndoStim/hernia fix, that bad gas shoulder pain still comes and goes, its horrible.

Tried eating a ready meal of chicken pasta with tomato and cheese, but I just couldn't eat it because the chicken in it was really tough, and the pasta was very hard to swallow/digest comfortably. I had no problem with pasta before and feel frustrated that I still cannot eat anything unless its really soft. So chicken wings and legs yes but not the harder bits of chicken like breast meat.

But I have risked sips of caffeine free diet coke and it seems to be ok, no upset, but I don't want to chance it so I'm not having more than a third of a can. And I ate some fat chips (fries) and managed only half of them

Many foods still taste so sour, they didn't before. so my fav blackcurrant yoghurt is now a no-no, tinned fruits in juice are out and I am reluctant to eat oranges or pineapple or scrambled/boiled eggs. I did eat a royal gala apple and some grapes and a banana, but slowly. I miss eating whatever fruits I like, I miss salads & cereals, dates, rice & pasta, and things that are not soft or could be sour now.

Had to stop taking the pantoprazole, like always before they bring on diarorhea, but so far I have not had to have any antacids whatsoever. I do feel the EndoStim is doing something good, I guess the real test would be whenever I'd next be due to have another endoscopy.

Found a pair of jeans that don't come up to the waist, wearing them with a belt feels so good! I am not a dress person!

so as I shove another spoon of blinkin' soup in my mouth, I wish you all a better day.

321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 3/13/2017 4:34 PM (GMT -6)   
So, its now 7 weeks since EndoStim and hernia fix.

the dreadful shoulder gas pain still comes and goes and when it comes its truly horrendous I hate it!! What a truly nasty pain it is.

Have not gone back on pantoprazole since a week ago, no ill effects not taking it, so I will try staying off it then. No Maalox anatacids needed nor taken at all.

Foods - during the last few days I have been able to eat & comfortably swallow for the first time since late January, a fried egg which tasted as it should, half a sausage, a small slice of sponge cake, egg fried rice (tasted disgusting as did the rest of the Chinese which I then binned), apple crumble, sweetcorn, a very small Danish pastry which was soft, a very small amount of a lamb kebab.
I have not had any indigestion/reflux from any of the above nor from black so called decaff coffee from coffee shops and really truly feel the EndoStim has been like a miracle, taking all the illness away - the acid reflux's simply ALL GONE!! WOW!!

BUT!! during the last few days its been very uncomfortable and difficult to comfortably swallow cous cous, chicken in breadcrumbs, fat chips (fries), soaked Kellogg's Rice Krispies not so slowly, broccoli (not blended).

So I am still avoiding a lot, deliberately. I am scared to and refuse to eat bread, biscuits/cookies, bacon, roast meats, whole apples, or any of the foods that have tasted sour where as before they didn't.

Perhaps psychologically I thought hey the 6 weeks have passed I can do what I want physically, big mistake. Overdone posture/movement/mobility, and have had immense pain in/around the area where the EndoStim is. Pain eased off now.

seeing the regular gastro doctor soon (see first post in this thread), for the first time since Leics EndoStim surgeon. It will be interesting to see what kind of reception I get...

321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 3/21/2017 4:49 PM (GMT -6)   
....and so over 8 weeks have passed since EndoStim/hernia fix.

Am able to eat a few more breakfast cereals, but stupidly tried to eat a couple of dates, & a fried potato pancake, big mistake, both felt very uncomfortable after swallowing. So I know bread is still completely out of the question for some time to come yet. As is pasta - tried a lasagne recently, hard to digest, but the pasta wasn't cooked enough in that restaurant, so I won't rule out eating it elsewhere soon. Broccoli is still an issue, even when overcooked, very strange as I am now able to eat a chunky salad & other veggies, but broccoli seems to be a difficult veg to eat, and I refuse to go back eating pureed veg again!!!!!

Still absolutely no acid reflux, and no antacids needed at all, and I remain off pantoprazole as well. I am chuffed and pleased that EndoStim has already helped so much in that respect.

Went to a few shops, but oh, as I entered one department store recently, my EndoStim set all the alarms off! How embarrassing!!! The staff couldn't figure it out, as nobody had left the store!! But I did tell them it was me and why so that when I leave they'd know I wasn't a shoplifter!!

Was due to see my regular gastro doctor (for the first time since surgery in Leicester), but for the 2nd time the regular gastro clinic told me he had "gone home for the day" and I was down to see a junior doctor. I had hoped to see him just before going to Leicester for surgery, but was faced with the same scenario as this time. I had hoped to see him just after having the surgery in Leicester, but again, was not informed he would not be there. I just felt out of courtesy knowing I had questions with my regular gastro doctor who previously seemed keen on new treatment methods, that he'd see me, even if it was just one last time. I was very upset & complained to the hospital. They have now sent me a new appointment with my regular gastro doctor in a few weeks time. I might be wrong, but it makes me wonder, are they messing me around because I had private surgery elsewhere in place of waiting goodness knows how long for a possible trial? I just don't know but at the end of the day it was my gastro doc who referred me to Leicester and I just feel more of an effort to see me after Leicester, could have been made....

As for the Leicester surgeon, who is amazing, I have a follow up with him in a few weeks, not sure at the moment what happens regarding general gastro check ups. But if its not with the Leicester surgeon, then I hope my regular gastro does better next time...

be well, everyone

321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 4/1/2017 5:39 PM (GMT -6)   
so it's now almost 10 weeks since EndoStim/hernia fix were done at Leicester. I'm still amazed about what a difference its made - brilliant!!

No acid reflux, no pantoprazole, no Maalox antacids. So far so good. Except, that wretched gas pain has still not gone away and when it strikes its as awful as it was a few weeks ago.

I have been taking a chance and eating foods I was afraid of. I can eat bread, so long as it's a small amount and very soft, and chewed a thousand times before swallowing. Still very uncomfortable eating harder meats like roast/sliced chicken/beef/lamb/pork and my fear of broccoli remains (having choked on it a few weeks back). Pasta is also tricky to digest after swallowing in particular tagliatelle as its thick and in most cases not soft enough for me.

So we are getting there on the food front.

Except, my taste buds have definitely changed. I have been struggling to enjoy certain foods that I loved before, that now either taste revolting, or make me feel nauseas as they seem too rich now, and this includes mozzarella, Chinese take away, Indian take away, bolognaise, potato salad mixed with mayonnaise, fried greasy foods, pesto, soups that are in cartons in the fridge or in tins (ie not freshly made ones), olive oil dressings, chutney in a cheese sandwich/bagette/roll, butter & margarine.

But I am thoroughly enjoying oaty breakfast cereals at last, a bit of toast, chicken wings, potatoes, cous cous, chocolate, veggies, more fruits than before (but not risked oranges yet), espresso's (no bad effects, and on the whole I stick to decaff coffees), sponge cake (just a little), and croissants.

Surprisingly I have not put all the weight back on yet, but overall - DOING GOOD!!!

theotherhalf
New Member


Date Joined Apr 2017
Total Posts : 1
   Posted 4/7/2017 3:07 PM (GMT -6)   
Thanks so much for sharing this. It's really nice to read a good news story. My girlfriend has just been through an endostim operation and is currently in the second week of recovery. She's doing well, but she's a natural worrier, so assumes that everything is going to go wrong. Her current panic is that, having slept in too flat a position, she's undone all the internal stitches and ruined the operation!

She still has a lot of pain from the operation, but is now mobile and can go on short walks to the shop. She went out on her own today for the first time since the operation, which is great, and is aiming to go back to work on Monday, albeit keeping her days short at first. Apparently she still can't load the dishwasher, though :p

Food wise, she's sticking to small portions of wet solids and is eating fine. No issues with swallowing, as long as she chews well. However, her acid is no better. Things did seem to calm down a few days ago, but over the last couple of days she's been feeling as bad as ever and is still on full PPIs. Hopefully we'll start to see some improvement soon. It breaks my heart to see her still suffering after everything she's been through...

TummyBunny
Regular Member


Date Joined Mar 2017
Total Posts : 24
   Posted 4/7/2017 4:15 PM (GMT -6)   
Wanted to say I appreciate your story and the information you're sharing. Also, while it's nowhere near what you're going through, I remember that trapped gas feeling in the shoulder from when I had my gallbladder out and it's the worst! Hope it goes away for good for you soon smile

321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 4/13/2017 4:13 PM (GMT -6)   
thank you tummybunny and theotherhalf.

Theotherhalf I was also concerned about knowing when it might be ok to lie in certain positions after I got home. Found them all ok, but the one thing that still makes me feel sore is if I stretch part of my body too much I guess that kinda adds up. So, I try not to stretch even when yawning or whatever makes me feel like doing so. Unlike your other half, I was not able to walk around for quite some time and still struggle greatly with this. We are all different and I hope she enjoys her walks, tell her todo some for me please! I was also very careful to eat extra bland foods for the first few weeks, because I was told the EndoStim could take up to 3 months to take effect. When I ignored that and got bored I did try rich foods out and they did give me acid reflux. and I stayed on ppi's for the first few weeks too. Give it time, she will do well.

tummybunny yay, that blinking shoulder gas pain still takes over, sorry you also experienced it. But all being well it will go away at some point..

So, for me now its almost 3 months since I had Endostim and hernia fix. No acid reflux, no ppi's/antacids needed or taken. my family doctor is thrilled as are my family and of course I still can't believe how great this gadget is.

But I am still sore where the incisions were all made and wearing waist high jeans where the button is directly over the belly button where one of the incisions was made, is very tender, even now. I have not returned to wearing the tent again et (that hideous dress), but if I do have to be dressed I'll wear the baggiest fitting trousers that don't dig in around the stomach area.

Tried eating chunky breads, oh my, discomfort and hiccups non stop, really YUK feeling after swallowing. So I won't try those again for some time. Soft bread is still ok but not a lot of it, just a little. Hard bits of meat and poultry or hard bits of chips/fries I still can't get on with, still uncomfortable after swallowing, so I will continue to avoid them too.

Tried eating different types of apples. still taste too sour, as do oranges, which is a pity as I used to eat a lot of these before without them tasting so sour. So I kind of kid myself its not me its them, perhaps when they're properly in season they'll taste ok then - I hope so.

Caffeine free fizzy diet coke - hmmm, I am not having very much of it at all and I refuse to have similar cokes if they are caffeinated. But I can't say for sure if this drink has become a slight problem and is one to avoid, or if its because its fizzy, or I don't know what. But each time I have drunk some, however slowly however small, I don't feel right, bloated perhaps, not quite sure what it is. If I had to give it up I'd be very upset and miss it a great deal. haven't tried any other fizzy drink, maybe I should then I'll know.

so yeah, swings and roundabouts on the food front.

Post Edited (321lift0ff) : 4/13/2017 4:17:18 PM (GMT-6)


321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 4/20/2017 3:39 PM (GMT -6)   
still haven't tried any other fizzy drink, but I did carry out an "experiment" - stopped having any caffeine free diet coke for a few days. During which time I still felt bloated etc and realise the true cause of this is from other medication I take. I know this because I didn't take the meds for 3 days during which I felt a lot better - no bloated-ness or discomfort. So, I'm back sippin' caffeine free diet coke! Yeah!

Bread/hard meats/chips(fries) still feel uncomfortable once swallowed, still avoiding these. All that now tastes sour still tastes sour, will avoid these too, for now.

Still have on off gas pain in the shoulder area, really annoying after 3 months... Still hope it goes away soon.

321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 5/9/2017 2:41 PM (GMT -6)   
It's now been 3 and a half months since the EndoStim and hernia fix.

I've now seen both my regular gastro doctor, and the EndoStim surgeon. Both are happy with how I have recovered & am getting on with the EndoStim, and happy when I was able to tell them I do not need any antacids, ppi's, etc, 3 months on. The implant was checked with computer software and all is well with the EndoStim.

Both say the bread/hard meat/pasta issue is because of the hernia surgery, and the swallowing issue with these food-types & the continued on/off gas shoulder pain will improve in time.

But today, unlike 2 months ago, I tucked into a Cream Tea (pot of tea, scone/clotted cream/jam), swallowing/digesting was no problem and I enjoyed it immensely!!

But crusty bread remains on hold.

And finally, an ode to Chas, half of British Cockney singing duo Chas and Dave, who unfortunately has been suffering so much more than I was, but so much less than my late father. -I hope his treatment works, I'm following his story right now and am routing for him; may he recover.....

Post Edited (321lift0ff) : 5/9/2017 2:49:31 PM (GMT-6)


Suzannecaroline
New Member


Date Joined Feb 2017
Total Posts : 9
   Posted 5/31/2017 6:12 AM (GMT -6)   
Hi 321, do you mind if I ask how old you are? I'm trying to find older people who have also benefited from Endostim. Bob Schmitt the Endostim rep told me there is no difference between younger and older patients but I would like to hear of some stories from older people.

321lift0ff
Regular Member


Date Joined Apr 2016
Total Posts : 60
   Posted 6/13/2017 3:55 PM (GMT -6)   
hiyah Suzannecaroline - I'm in my early 50s and hope that won't class me as being too ancient!!!

As for me - it will soon be 5 months since the EndoStim/hernia fix, and no ppi's/antacids needed at all, no feelings of reflux after eating or at night.

I am still getting that awful intermittent on/off gas pain in the shoulder and can't wait for it to just go away completely!

And I still can't comfortably swallow hard meats like chicken breast etc, or hard bits of bread. The other week after eating egg fried rice it felt as if I'd only just had the op - again I felt like it was stuck/about to vomit, luckily though eventually the rice was digested and I didn't throw up. But I won't be eating any more rice either for a bit, nor will I even attempt to go back on wheat type cereals like Shredded Wheat just in case the same happens. I remain apprehensive about eating in general, and the idea of eating apples, oranges and lots of prepared foods in sauces etc now make me feel nauseas as they just seem too sickly/sour now, so I'm more fussy & my diet is more plain than it was.

I continue to bewilder some hosptial/office security staff as in some of them my EndoStim sets their alarms off as I go in, it's quite funny seeing them not being able to figure out why their alarms went off!

And so, they say, in the UK there will be extra security at lots of places from now on, but they are not going to force me through anything magnetic at all. There was an issue at one place, but after an aggressive broken record argument and showing them my EndoStim identity card, I made sure all their machines/magnetic wands were all turned off and kept well away from me. I just don't want to risk any discomfort in my body in any way.

Owing to other health issues I am due to have an MRI soon, but it's been difficult and taking what feels like a long time with myself and my doctors getting this other hospital to fully understand that the EndoStim *does* allow one type of MRI once it's been turned off. They are having to check and triple check with EndoStim themselves, which although annoying I am grateful that everyone is making properly sure I will be safe in line with the EndoStim guidelines, and that they're not just rushing into anything. Must admit I am a little nervous, as this hospital's MRI team hasn't dealt with EndoStim's before. But I do trust this hospital.

And so after my MRI yes I will make very sure with the EndoStim surgeon that all is well when they turn the implant back on.

And I am very, very thankful that the EndoStim manufacturers did test it & officially confirm that it is still ok to have (one type of) MRI.

will report back!
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