Tuesday, 27 August 2013

Week 9 Update

Well, week 8 came and went -- not much to report anyway!

Had a follow up with the surgeon today which was helpful to put things into perspective. I was reminded of my main symptoms prior to implant: regurgitation, dyspepsia, coughing, and belching. The good news is that three of those are basically resolved post-LINX. The first and the last are most noticeable in their absence, which has significantly improved my quality of life.

The dyspepsia is still outstanding, though it is much better now that I'm back on 20mg omeprazole.

The healing process is still ongoing, and I may ultimately never get quite as stellar results as others due to my esophagus being hypersensitive to acidity. Who knows. Maybe it needs longer to calm down and heal post-implant, and post-four years of acid reflux. Maybe the vagus nerve is irritated and needs time to adjust as well. Or maybe this is as good as it gets. If so, I'd still do it all over again and have the LINX implanted.

I will continue to try to kick my PPI habit over the coming months, but I'm going to be taking it slowly. And ultimately, I'm deciding to be okay with 20mg a day into the future, if I'm not able to come off then. There are new procedures in the works for reflux and more will develop in coming years. By no means is this the end of the road.

For those of you out there who are at the beginning of your LINX recovery and struggling with dysphagia: chin up! I have a theory that those who have significant dysphagia have a better outcome ultimately due to a better tightening of the sphincter. I had nearly none and still have mild discomfort with burning in my upper esophagus daily. So think of the pain as a good indicator of success if it's getting you down!

Wednesday, 14 August 2013

Week 7 Update

Very discouraging week. Only 1 "good day" to speak of where I was medication free and not feeling too bad. To be honest, I feel that I am right back where I started more or less. Burning in the throat, pressure in the esophagus, watching what I eat, exercise-induced discomfort.

Good things are that I am still no longer getting liquids coming back up after drinking, which is wonderful. And I don't have the constant burping after eating -- which is amazing.

And the PPIs help when I take them. I've decided to go back on them and see if I can manage with just 10mg, which is the smallest dose that is still therapeutic. Zantac does nothing.

Fingers crossed things improve!

Wednesday, 7 August 2013

Week 6 Update

Another mixed bag of a week.

Some really great times when I forgot all about reflux and heartburn! Had an Indian curry with some wine, followed by strawberries one night -- no big deal.

Other days where I've felt hoarse at the end of the day with some of the old belching. Can't tell for sure if anything's coming up - and I definitely am not getting food/liquid in the mouth etc. - but feel burning at the base of the throat and get the sour/bitter breath thing as well. Again, not every day. And the horrible feeling of water coming back up my throat after I swallow disappeared permanently after the surgery. That is a huge relief.

I think one element that is definitely contributing is gastritis. I know my stomach is sensitive and I was diagnosed as having inflammation of the stomach (gastritis) on my endoscopy several years ago. Now that I'm off PPIs, I have to remember to treat my stomach nicely! I got all excited about being able to eat grapefruit again, for example, but of course grapefruit is still highly acidic, whether you have the LINX or not - so the stomach can still react to it. My aim is to find ways to reduce inflammation there as much as possible without PPIs.

I am able to exercise a few days a week, but need to be careful not to overdo it still. My goal is to be able to exercise normally at 12 weeks, so I am very impressed at how well I am doing now.

I have been taking Zantac a few days to calm the gastritis, as well as slippery elm powder and Gaviscon. Hoping to stay off the PPIs or H2 Blockers, but my feeling at the moment is that if I do have to go back on them, I will still be worlds improved than before the surgery, and will probably be able to take a lower dose.

Perhaps this post sounds negative; however, I am considering everything up to around 12 weeks to be a part of the recovery process.

Thursday, 1 August 2013

Week 5 Update

Up and down this week. I’ve had some days nearly heartburn free, and others not so much. I think I can relate it to something pretty straightforward, though disappointing if it’s true. On the mornings that I work out, I have mild burning in my esophagus for the rest of the day. “Working out” means Pilates-type exercises at the moment. I don’t really want to stop because I don’t get any pain at all when doing the exercises, or any localized pain afterwards during the day. So I don’t suspect that the LINX site itself is being irritated.

Any ideas about what might be going on physiologically? I’d be interested to know of any theories!

Might start exercising in the evening when I have time for it – but time in the evening is scarce, so it’s not ideal.

I read on a forum this week that someone who is something like 4 months out is having burning still, but his neurogastroenterologist said that he wouldn’t want to do another diagnostic test (manometry, 24 hr pH etc.) until 1 year out because in his experience people with the LINX are never refluxing. Strong words! I am encouraged by that in a big way.

Speaking of encouragement…I have to work on my mood not being affected by how I’m feeling on a particularly day. I mean, on the days when things are good, I am elated and so conscious of the before/after difference. But on the mild burning days, I do get down. Because of course, I want to be able to keep my body strong through exercise (which I need to do because I have hypermobile joints that can sublux and cause pain otherwise) AND be heartburn-free. Am I asking for too much?! ;)

However, I have to restate that even on the worse days, I am still better off than before the surgery, and especially when I consider the lack of medication…I am now PPIs completely, and loving it. Gaviscon tablets once or twice a day at this point – sometimes none per day.

No swallowing issues at this point, basically. Occasionally when wolfing something down I feel the traffic jam beginning, but water pushes it through. It's fun to think that my esophageal muscles used for peristalsis are actually stronger than they were before.

Can't think of much else to report... Let me know of any questions!

Wednesday, 24 July 2013

Week 4 Update

I just finished out 4 weeks of being bionic! Or close enough, with the LINX implanted.

Week 4 was better than week 3 - the heartburn I'd felt was more intermittent. I feel it more (and it's still mild, mind you) on days when I'm at work - I think it's due to sitting down all day, possibly with poor posture; and the inevitable stresses of the workday could be a factor as well. I also drink a lot more water when I'm at work, and drinking lots used to be a reflux trigger...perhaps it's the same effect, just really muted due to the LINX doing its job.

Went on holiday for 3 days and let me tell you, that was when I truly started celebrating over the implant's success. Eating was a breeze, with no reflux or heartburn -- and I made it work hard, with burgers and fries, big Irish breakfasts, chips, BLTs that were heavy on the B...I even had an apple fritter with coffee! Haven't eaten one of those without lots of pain and reflux for literally years - and forget about combining it with coffee. Gotta start watching what I eat soon for entirely different reasons! But I'm not quite ready for that yet. Still enjoying so many previously off-limits treats.

The comparison is really stark when I pause to think about it. 7 months ago when I was on a similar 3-day holiday in Wales I had nonstop pain and reflux, and was eating much less fatty foods.

Basically off the PPIs altogether now. I have some Zantac that I carry around with me but I've only used it once. I do find that I'm taking on average 1-2 Gaviscon tablets per day -- and I could probably do without it but it does help. Even if it doesn't get better than this (and the mild discomfort in the esophagus gets no worse), then I'll be successfully off the PPIs and pleased with the outcome. However...still hoping for more improvement, to the point where I can forget my meal altogether!

Exercise has resumed. I do Pilates most mornings, and cycle to and from work. I've been for a jog once and it is only due to how much I loathe running that I haven't repeated it!

Other supplements have resumed as well, albeit with some swallowing trouble that passes when I'm patient. I take calcium+D, magnesium and omega 3s. I take slippery elm capsules with meals. I hope to get round to ordering some water kefir grains soon so I can get some good pro/prebiotics in the system. I have intermittent, mild IBS and would like to see that gone also.

I've noticed an appetite change as well. My appetite has increased, and returned to what I now remember it used to feel like when I was a teenager. I had sort of an epiphany when I realized what the 'deja vu' I was experiencing was! Actually, I think I'm in a process of figuring out what a normal appetite is... since I'm not uncomfortable with reflux, heartburn, and having my every meal repeat on me for hours on end, I think I'm mistaking that "silence" for hunger at times.

Can't think of much else to report at the moment. Hoping that this time next week I'll report to not having taken a single PPI for a full 7 days! I'll leave you with a picture of Finn McCool's Giant's Causeway...

Wednesday, 17 July 2013

Week 3 Update

Week 3 much the same as Week 2, but significantly less dysphagia. I've heard it comes in waves, so maybe it's coming back round again soon. I had only one stuck situation this week where I had to run for the sink, and again first thing in the morning, cold water and a pill. Should've learned my lesson! I was fine the other mornings though...just a one-off. Haven't had any issues with food at work though, which was a concern of mine as I'm in a small office where we all sit together and often eat together. Big sigh of relief there for avoiding awkward moments!! Very dry crackers like saltines are a no-no, but other than that, everything goes down. Water or liquids still seem more difficult than solids.

I have no onsite pain or internal pain. I occasionally have bloating more than usual, but nothing too obvious (I hope). I have a small frame so I puff out anyways after a meal :) I tried fizzy drinks this week, and have decided to swear off them. It wasn't comfortable afterwards with some gas pains for several hours. Just as well - they're bad for you anyway, right? Bit sad about sparkling alcoholic beverages though, as they were always a special (though reflux-inducing) favorite. Perhaps in good time.

I have continued to find that I can eat more, and more comfortably, than I used to be able to. I have been able to eat things like potato chips without more than the average amount of mild burn afterwards, which I assume other 'normal' people get. And if not, it's minor anyway and I don't eat them often. I was getting a bit discouraged about that today, but then I remembered that during my pH monitoring I had a bag of Walkers and my throat/stomach was on fire. The difference is stark, even if it's not 100% on/off.

So all in all, at the moment, I'd say I'm experiencing a 75% cure from my reflux. The number might be higher, as part of the issue is I don't know what 100% would feel like. If the post-meal  discomfort/pressure I described previously were to go away, I think I'd be at 100%. Perhaps in 3 months or so my body will have adjusted to being PPI-less and start regulating digestion more properly again - maybe that's the ticket.

In any case, I still feel like the LINX is a revolutionary device that I'm sure will spread like wildfire if the 10-year results are good.

Any questions are welcome!

Wednesday, 10 July 2013

2 Week Update

It feels like ages since the surgery; I can hardly believe I'm only writing a 2 week update!

Incisions: Post-op pain is almost totally resolved. The largest incision is still tender at rare moments and I can feel quite a bit of lumpy scar tissue forming underneath it. But for most of the day I forget that I have had any kind of surgical procedure at all! No pain medication now for anything. Scars are small and already forming new skin and diminishing.

Reflux/HB: It's been a slightly less glowing report than Week 1 - hopefully just as my body adjusts. But the first thing to say is that I'm not really experiencing reflux or belching, or water coming back up the throat like it used to. So on that front I'm still in a whole different category than before.

What I am experiencing on a daily basis is some discomfort post-meals that sort of feel like stuff trying to come back up. Pressure, and discomfort both in the LES area and throat (not from heartburn, just from the pressure -- I think). It feels a bit like the reflux did BUT the point is that it doesn't come back up - i.e. I don't have a bad taste in my mouth or feel anything come through the UES. I would love for this symptom to go away, so that I can not have to "remember my meal" at all after I've eaten it. If you have reflux you'll know what I mean by this, I think! This symptom is also bothersome because I'm a singer, and so to have that feeling while taking a deep breath and trying to produce a sound...can be tough. Sort of like how you can't burp and talk at the same time.

I also have some sharp hiccup-type things after eating fairly consistently. Just a single hiccup, not the actual dreaded hiccups. "Normal" people get that sometimes, so I'm telling myself that it's a good thing because I'm now normal too! But in all honesty, I think it's probably related to the LINX device, and I'm guessing will probably change in the coming weeks.  

PPIs: I'm titrating down on the PPIs. Week 1 was full dose, Week 2 has been every other day, and now I'm heading into Week 3 where I'll do every third day. That might be contributing to the above discomfort. I do have gastritis as well, so some days without the omeprazole I get stomach pain in a very specific spot. I seem to have really localized irritation - and had that way back 4 years ago when I first got on the meds. I'll be trying different ways to soothe this now that reflux is under control. Slippery Elm Bark has been promising before...but I hate the stuff! Recommendations welcome (I've tried a lot already!).

Dysphagia: I had my very first dysphagic moment on day 9, but it was just uncomfortable and nothing patience and water didn't cure. Then all of a sudden yesterday **it got real. Yesterday morning (Day 12) I had a lot of pain trying to get the first swallow down in the morning. Not a nice feeling. Otherwise I was fine throughout the day, trying to CHEW, SWALLOW, PAUSE. This morning was even worse. I took some water, which hurt going down, then took a tiny allergy pill, then a bigger supplement. The bigger one (half the size of a penny) got stuck, hurt like crazy, then the saliva routine started up. I had gushes of it washing up and finally sort of vomited it into the sink (sorry...if you're reading this I assume you want to know the gory details!). Unfortunately, the pill didn't manage to come up, so it was stuck there for another few minutes before passing through the device. Horrid. And I wasn't too keen on drinking more water to get it down either! I made some warm tea which seems to help and then 5 minutes later porridge went down basically fine. First bite of most meals seems the worst.

I had chicken salad at lunch today and had one stuck bite with pain, but no bringing anything back up (thankfully...I was sitting at my desk at work and terrified of rushing into the bathroom!!). I've heard that meats can be tricky, as can breads. I agree on both counts. It seems like if there's a big break between meals then the first swallow is worse as well.

It's weird because sometimes taking a big, painful gulp of water gets things down. Other times water seems to make it much, much worse. Did anyone else experience the water thing?

My note-to-self is warm tea with meals to get things opening before eating. And chewing. And pausing. And no pills first thing in the morning :)

Foods enjoyed: This week was a little less exciting as it didn't involve Indian food, sadly, but in terms of trigger foods I got a few in. I loved eating three slices of pizza (never would've risked it right before a rehearsal...but it was totally fine!), big bowls of breakfast that actually kept me full (I usually had to eat small breakfasts because that was a really refluxy meal, no matter what I ate), grilled sausages. Oh, and dishes with garlic and peppers. Both those foods made their presence known to me for hours after I ate them with reflux and what I'll tactfully call "scented belches".

Activities enjoyed: 
  • Cycling in to work in the morning - formerly always painful because of reflux. 
  • Lying down after dinner - might be habit-forming now that I know how nice it feels! 
  • Not worrying about strong flavors in dishes - though garlic breath is never one's first choice.
  • Eating more in one sitting in general. The nice side effect of this is not having to snack as much.
  • Still not exercising regularly yet, though I cycle to work and back and walk during the day. Hoping to get some strength work in soon, though I want to take it easy on the abs. 

Thursday, 4 July 2013

Day 7

Well, we've made it to the last of the daily updates one week post-implant, and the news is all good! I haven't experienced reflux or heartburn (though I haven't started titrating down on the omeprazole yet) and have been able to eat regularly with minimal discomfort. Incisions are already fading as well. I'm no longer taking any pain medication or Gas-X.

Mobility is good, though I think I still have a bit of a protective hunchback pose much of the time because my back is sore by the end of the day! Once the main incision is better healed that impulse will disappear. No exercising yet but walking around fine.

Made it to rehearsal for the show I'm doing as well and managed a few leaps and twirls in the dance number (albeit slightly muted on the leaping front :)

As for lingering negatives, I still do get occasional upward pressure a few times a day that is quite painful but very manageable. After a biggish meal I have more bloating than I used to, and I think I'm still a little bit bloated in general. But that will improve (a) and is still completely work the lack of reflux (b). Also having a bit of dysphagia when swallowing liquids or lighter foods like fruit, bu it's not really painful or anything that patience can't beat.

I'll check back in a week's time for another update.

Trigger foods conquered today: pizza, apple!

Wednesday, 3 July 2013

Day 6

Progress continues to be good. A few instances where swallowing has felt constricted, especially (weirdly?) with liquids. Cold ones worse than warm. But if I'm patient, they pass through. No significant problems with food yet. I continue to have occasional pain after eating (see previous posts) but again, no real belching or reflux which makes me SO happy!

Went out yesterday to a coffee shop for two and half hours and my back was pretty sore by the end of it. Didn't mind too much because I was drinking coffee again :)

No significant pain around the incisions, and only a few stabs of discomfort at the implant site itself. I feel lucky because it seems like some people have had many weeks of real soreness around the LINX. Perhaps it's still yet to come for me, but I'm optimistic.

Removed the opsite dressings on all but the big incision, and the scars are already smoothing over. I can tell already that they're going to fade to nearly nothing - in a way, I hope I have one or two battle scars to show for it!

Trigger foods conquered today: Indian food, tortilla chips, coffee, bacon

Tuesday, 2 July 2013

Day 5

Really turned a corner today. Didn't need any tramadol, and only took 2 doses of the over-the-counter analgesic. Still getting the uncomfortable upward pressure feeling after eating, but having no reflux or belching is WELL worth it. I could probably be back at work today or tomorrow, for those interested in the LINX and wondering how quickly a return to work could take. I'm off until Wednesday though, and definitely enjoying the free time to take it easy.

As some others have described, my back does get a bit sore after sitting upright or not changing positions. Not sure why - might be that I'm holding myself funny because I'm subconsciously protecting the incisions. Maybe gas related pains. My partner did tell me that I'm "walking like a cavewoman", which I thought was rather indelicate :)

I'm not usually given to making sweeping statements, but especially if the upward pressure type feeling lessens, this procedure will be a life-changer for me. Can't wait to see how it pans out. I'm interested to see how much of the dreaded week 2 to 6 dysphagia I will experience...I don't want to get too complacent and then get a shock!

I'll switch to weekly updates after Day 7, but in the meantime I'll leave you with some more good news...

Indian food for dinner (big trigger) with a little bit of wine, and ice cream afterwards: no reflux!

Monday, 1 July 2013

Day 4

Another woozy start to the day. Managed to sleep in spurts, but woke up at 4 needing to hit the tramadol! I certainly miss the hospital bed with its easy up/down movement; it can be tough to get comfortable.

Everything still going down easy and I'm getting more confident which is good. Definitely having an increase in that uncomfortable upward pressure in my esophagus. I remember reading that someone else had this and said it felt like reflux which made her worried that the LINX had failed. It does feel like reflux, but my instinct is that it's just my body getting used to the implant. It's definitely not a pleasant sensation, but it's a long way off from the old acidic/food burp scenario after every meal (forgive the imagery). Even if this is the new normal - and I don't think it is - I'll be happy with the improvement. So much of healing well is staying positive and seeing the big picture. (On that topic, I can recommend a cheesy but engaging read for your next long-haul flight: The Happiness Project by Gretchen Rubin.)

Incision sites are pretty itchy on and off. It's hard to believe that in just two more days I'll be taking off the waterproof coverings on the incisions. The body gets to work repairing itself so efficiently!

Managed to drive to church today and back, but only made it through an hour. The gas bloat makes it tricky to sit in one position with shoulder/back pain. Nonetheless, it was definitely doable to get out and about as long as I was walking very slowly. Every day I feel more and more able. 

By the end of today I was feeling much better than the beginning - basically at exactly 72 hours after the procedure. If you've already had the LINX, when did you start feeling more mobile, etc? 

Food today: banana porridge, blueberries, pork/bacon chili with rice (amazing to eat chili without reflux/belches!), ice cream, crackers, and a delicious square of chocolate to cap off the day.

Sunday, 30 June 2013

Day 3

Not sure if it's the tramadol, GA, or just plain old surgery trauma, but I woke up feeling pretty rough this morning. Had to lie down down twice when the world starting getting hazy! Food helped - had some oatmeal and tea. More discomfort after eating, specifically a painful upward push that sort of echoes all the way up the esophagus. No pain on the way down though. That painful upward feeling happened after every meal today, and sort of felt like a burp that wouldn't come, except I felt it high up in the esophagus at the throat too. I think that either something is pushing up against the LINX, in which case I'm happy it's working, or it's some kind of mild spasm that's related to the surgery. I'd be interested to know which it is, but it's too early on to be worried about any symptom really.

Managed more food today -- appetite returning slowly. Lunch was pre-made potato bake with veggies and small pieces of chicken (thank you, Tesco), and I decided to try more bread again for dinner with one of my trigger foods, peanut butter. Foods with high water content and density are easier, though one measly grape nearly got the better of me!

I managed a slow walk down the end of the street and back. Because my surgery was late in the evening, this is really day 2 rather than 3, so I'm happy with recovery still. Shoulder pain still there but not as insistent. I was able to lie down on my side for a nap in the afternoon (I'm a tummy sleeper, so side-sleeping is my best bet with 6 holes in the abdominal wall!), which I couldn't do last night.

I've spent the last two days solo in the house, and for those of you who are considering the LINX and live alone, I'd recommend getting a friend or family member to come and stay with you for the first day or so. Nothing is unmanageable, but mobility limitations (i.e. reaching for something off the shelf or on the floor), possible woozy patches, and the need for distraction from the pain would all be helped by having someone around.

Also, I would recommend taking a stool softener from day 1, as constipation makes bloating worse anyway - and I think the bloating is a big part of the pain I'm experiencing in my stomach, when taking a deep breath etc. 

Saturday, 29 June 2013

Day 2

Shoulder pain back in full force in the morning. I'd heard from others that moving around/walking helped, but that made it much worse for me. If I lay down still the pain was tolerable. After breakfast a second dose of tramadol and paracetamol helped. Every 6 hours now I take tramadol (50mg) and paracetamol (500mg).

I had been drinking water through the night with no problems -- none of the typical cold water coming back up the throat as usual. My surgeon said it was too early to judge anything, but I was pleased nonetheless! It's so important to grasp the positive signs, because naturally the negatives weigh more heavily on us.

That said, I was pretty worried about breakfast. It was hard to believe that the LINX was actually implanted and that things could possibly feel the same. The nurse recommended starting with porridge and raisins. Nothing felt stuck, and I made sure to drink warm tea every few bites. The Torax rep I spoke to mentioned that drinking something before a meal can help prime the LINX, so I'll plan to do that - probably with warm water - until I feel more confident. I didn't experience any reflux afterwards but did have one very painful hiccup (short-lived, thankfully!) and several moments where I wanted to belch but didn't. I say didn't rather than couldn't because I didn't try very hard! No nausea.

I have six incisions (despite being told I'd only have 4) and like most people, the onsite pain isn't really that bad, just sort of insistent when the meds wear off, and it sure lets you know what mobility limitations there are! I've been able to sit up fine, squat to pick something up off the floor, and generally take a deep breath when I need to by bending forward slightly. Not really a big deal when on the meds...although I fear the meds allow me to overdo it a bit and by the end of today I was really feeling the pain everywhere.

Left the hospital at 11am and the car journey home was a little unpleasant on the incisions. Talking is definitely difficult and painful, and my voice is still hoarse. The nurse recommended walking around to prevent blood clots but at the moment I can't stand up straight due to the pain from the incisions and so walking is a little bit feeble too. Good reason to snuggle up in bed with a film...

Lunch of toast with cheese and avocado went down fine with water to help. Bread is always harder to swallow but I wanted to test it out. Delicious British strawberries were a treat as well. A few hiccup/spasms as in the morning but not nearly as painful.

Most people seem to experience the worst of the dysphagia between weeks 2 and 6, and describe a sort of W effect, where scar tissue will form and cause restriction and dysphagia, before the body readjusts and you feel better again. Then scar tissue reforms and causes issues, then readjustment...etc. I've been encouraged to eat regular food to help exercise the tissue, though was told, with a smile, that a steak and french bread might not be the easiest to manage for the the first few days.

It certainly seems true that after the first 5 or so swallows, things feel almost normal for the remainder of the meal. I'm taking one Gas-X with every meal as other LINX-ers have advised as preventive medicine. 

I've heard from others that pain improves around days 3-4 quite a bit...looking forward to that!

Friday, 28 June 2013

Day 1 - Surgery

My surgery was at 7.30pm, so I arrived at 5pm at the hospital and was very well taken care of by the excellent Circle Reading staff.

Before I was administered the GA, I mentioned to the anesthetist that I was having to miss a rehearsal for the Gilbert and Sullivan show I'm doing due to the surgery, and he insisted on me singing a few lines from Les Mis, one of his favorites. I happily obliged, though since I already had a hypodermic-full of relaxant in me, I'm not sure quite how melodious that rendition turned out to be!

I awoke around 9 - the surgery is about an hour long - and found it hard to catch my breath for a few minutes but was soon back in my room. No significant pain around the incisions, but before long my shoulders started aching terribly, due to the CO2 they inflate your stomach with during the procedure. Tramadol and good old-fashioned paracetemol did the trick and I was able to rest throughout the night, though I did not sleep (tramadol keeps me relaxed but alert). The nurse checked my vitals at regular intervals.

Sore throat from the intubation was also better than expected. This was my second experience with GA and I felt it was much easier this time round, which I completely owe to the fantastic anesthetist!

All in all, I was impressed at how little pain I felt. Having had shoulder surgery before which was painful despite various pain medications, this was a pleasant surprise. Also pleasant was the discovery that my room had the Food Network channel!