Sunday 16 October 2016

3 years later...

A brief update 3 years on from surgery. I have been PPI-free for a few years now. I consider the LINX device almost a cure for the reflux I experienced. I occasionally have some heartburn, but if anything less than the average person if my husband's occasional complaints of it are anything to go by!

Some of my sensitivity is (and was) linked to environmental allergy. When my hay fever is bad, I am more likely to experience irritation in my esophagus from what are likely normal levels of acidity.

All the best to those searching for resolution for GERD!

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!