It's been 22 Months! And Some Things to Consider...

Hard to believe! Seems like just recently I was wringing my hands and praying about the whole NF decision and upcoming surgery, unsure of what I was getting myself into, and if I'd have regrets. At least my misery was a KNOWN misery...

Anyway, not much has changed recently. I still have to eat carefully of course - slowly, chewing thoroughly, and taking small bites. Still, there is occasional sticking of food, but not so bad. And I am able to eat everything I did before, with the exception of carbonated beverages.

For those considering this surgery, there are just a few things I want to bring up, based upon things I see mentioned and discussed in the Facebook NF group:
1 - When considering this surgery, remember that for most people it is a wonderful thing! But when it fails, it is awful. Truly awful. People who've had bad outcomes are often left wishing they had their former GERD issues back instead. That's how bad it is.
2 - Every experience will be different. Sure, we all have similarities in our NF experiences, but there are plenty of differences as well. Add to that, that doctors often give vastly varying sets of instructions, and there is no way to predict your future. In the end, you will often have to advocate for yourself, figure out for yourself what foods you can and can't eat, how soon you can resume activity, etc...but one MAJOR THING TO REMEMBER...
3 - ...You only get ONE CHANCE to heal properly! If you are in doubt - DON'T! If it is uncomfortable to lift something - DON'T LIFT! If you are in pain or exhausted from going to work too soon - GO HOME! If you have pain after starting to eat solid foods, go back to soft! I can't emphasize this enough: This procedure has a high enough rate of failure without impatience entering into the equation. SERIOUSLY! Don't stress your new wrap, use common sense, don't ignore pain or discomfort, listen to your body's advice, you have nothing to prove. It doesn't matter what anyone else's experience was or how soon they did things, or what anyone thinks of you taking "too much" time to heal properly, or how impatient you are. Just do it right. Because this is the only chance you have.
4 - Your body will take up to a year to heal and adapt. It has undergone a brutal assault, it has to relearn how to do digestion, and there are things that don't even seem related that it has to deal with (hair loss, depression, etc.) - AND all on a limited diet! You will start to feel better, even normal, long before that. But just cut yourself a break if you feel the need during that first year post-op :).
5 - There are other types of procedures to deal with HH and/or GERD. The NF is the most severe, but there are various kinds of partial wraps, the new LINX procedure, etc. Do your homework and discuss the options with your surgeon (who, BTW, will probably recommend the NF right off the bat!). But if a partial wrap can restore the Angle of His and support your LES, you can ask about that option.
6 - If you choose to join a forum or support group online re: the NF procedure, remember that these groups don't statistically represent successful vs failed ops. It is easy to read a lot of people's woes online - just remember that the vast majority of people who have had an NF do really well afterward and have a normal happy life. These are not the people who join support groups. People who have failures and problems join support groups. So naturally the populations of these groups are heavily skewed to the negative. Don't let that be your guide as to what Life After NF is really about :).

Definitely do your homework. Be prepared. Go into it in th best health you can. Be nutritionally stoked going in, and concentrate on nutritionally dense foods afterward. Use a surgeon with lots of experience, and with whom you feel comfortable; if you have doubts or unresolved questions about him/her, find someone with whom you can relate.

Hopefully these suggestions can help give you things to consider if you are looking into a Nissen Fundoplication :).

A Year And A Half!

It is exactly 18 months today since I had my Nissen Fundoplication. For those who have worries that their lives will never again be normal, as I did, I want to reassure you: Yes, it can be normal. I have mentioned a "new normal" before, and that's what it's about, to varying degrees. Different folks have different outcomes. Some have many more dietary restrictions than I do, and can't tolerate various foods. But this blog is about my NF experience and that's all I'm really qualified to write about :). Just the last couple of months have brought some changes. The last few times I ate pork, for example, it didn't get stuck. Although rare (since I eat a low carb diet), on those occasions where I've indulged in bread or rice, it hasn't gotten stuck. The quantity of food I eat at a meal has very very gradually increased as well - pretty much without me even noticing it. This part I'm not so happy about, I actually liked when I could only eat a half-cup of food at a time! But I suppose it is all part of my body's adjustment... I still take a ranitidine at bedtime, most nights, as my stomach contains so much acid the pain of it wakes me up. However, I don't feel a need to take it every night anymore, and I plan to try the 75 mg. tablets the next time I buy it, rather than the 150s I've been using for years. I'm having good results with a very small snack at bedtime (say, one scrambled egg as an example), that seems to help. No burping either, which means there are always issues with gas. But not as much as my surgeon had warned me about certainly. I am able to eat my beloved raw veggies (give me some raw cauliflower and a bottle of ranch dressing and I'm a happy camper!) but not pig out on them or the bloating is just too much. But cabbage - one of my top 3 favorite veggies - when cooked doesn't seem to bother me. Good thing too, since my husband and I discovered roasted cabbage we eat a LOT of it - 2 dishes (cereal bowl size) of it for me yesterday, mixed with roasted onions and bacon! And I did fine with it. One change is that I always have to carry Zofran with me, and take one at the very first sign of nausea. This hasn't happened in a couple of months now, but when I need it, I need it NOW! There is no way I can ever again let it get out of hand, that is pure torture! Another change has to do with hiccups. I've always gotten them on occasion, as most people do...but now I get them anytime my wrap isn't happy - if I eat just one bite too much of food, if something has gotten stuck, whatever, and I get them often, at least once a day, just for good measure. And hiccups are painful now. Not excruciating, but they hurt. So that is another part of my "new normal." Lastly, I am still very careful about lifting/straining, such as when rearranging furniture. Not only was I instructed that, to preserve the integrity of my wrap, heavy lifting will not be something I should ever do. I know that I get pain in my wrap area when I'm pushing my limits, and I'm very careful of that. (With arthritis in my spine, heavy lifting isn't something I can really do anyway.) From my perspective now, a year and a half later, this is one of the best things to ever happen to me. The changes to my life that I had feared are really no big deal. What IS a big deal, however, is that I have a life again, I sleep laying flat with just one pillow, can eat almost whatever I want (carbonated beverages are still out of the question), I don't spew acid and stomach contents when I bend over - or even when I'm just sitting, etc. And I am forever thankful to those who made this possible, you know who you are! Life is good!

13 Months Post Op: #fundoplication issues?

I don't think so. I don't think anything at all is wrong with my wrap, or what is going on is really related to it. But I'm sick, and I have to wonder...

9 days ago I had a bad pain day, needed to throw up, took 3 nausea pills, and just had to endure and wait for whatever-it-was to pass through. Now for about a week I've had a bellyache and often nausea - usually mild, sometimes severe enough to need an ondansetron tablet - every time I eat. Drinking doesn't bother me, but eating certainly does. And more than small portions causes pain at my wrap site. My gut reaction is that there is some kind of inflammation or something going on in my stomach, for some reason, and maybe it is just over-reacting to food as a result? I don't know though...

I do know that I still have a lot of stomach acid, and if I go without ranitidine for long the result is burning pain. So I stay on top of it. Unless the ranitidine isn't doing its job anymore, I've grown "immune" to it or whatever?

Also this week I have a lot of other things going on: a UTI. A respiratory infection. A toothache. Bloating/constipation. Aches, pains, intermittent fever, chills, achy joints. So I think my body is just sick. If it goes on too much longer I'll have to see my doctor I guess, although I just saw her last week, for now I'm doing all the right things and hoping my system can just fight it all off.

So it isn't just my stomach (although that's where all this seemed to start)...and it definitely isn't the wrap itself. But I have to wonder if I'd just been able to get rid of whatever was making me sick 9 days ago if maybe I'd have just been better - like maybe the toxins bad bacteria or whatever had to stay in my system too long when my body normally would have ejected them right away before they could make me sick in so many ways?

All speculation. But there's my update anyway, for whatever it's worth to you :).

A Blog Worth Knowing About: The Adventures of Beaner

http://adventuresofbeaner.blogspot.com/ is the URL.

"After many previous and current inquiries about Ian and our family, I have decided to put together a blog for any interested followers. I'll include Ian's adventures, including the ups, downs, and in-betweens."

"Ian was born 11 weeks early, at 29 weeks, various gastrointestinal and pulmonary issues"

Ian has had a Nissen Fundoplication as an infant, and this blog discusses his issues. Worth a mention here, as it seems that babies who undergo NF have their own considerations.

ONE YEAR!

Yesterday was the 1-year anniversary of my life-changing surgery. I believe I have a normal life again although it's not the same normal as I had before the GERD began nearly 20 years previously. But it is normal to me now.

These differences are few, though. Still no carbonated beverages, since I can't burp, for the most part. Very very occasionally a small amount of air will work its way back up past my wrap, but it is not often enough to be sure I could burp when I needed to - 95% of the time, at least, I can't. For the same reason, I can't drink through a straw, which is would mainly be an issue at fast-food drive-thru places. But we keep a bottle of water in the car for those occasions. And speaking of air, what can't come back up, has to pass on through. So I'm more flatulent than I've ever been, and don't have much control over that. I try to not be rude about it but, well, like I said, I don't have much control over that.

As for foods, I probably only get "stuck" a couple of times a month now. Smaller bites and thorough chewing are second nature. Large bites are painful going down, even if they don't get stuck. As I've mentioned, cooked pork and bread are the main problems, like if I have the very rare (as in infrequent) hamburger on a bun for example.

My appetite is about 75% of what it was prior. I graze more now. Eat less at meals, get hungry sooner afterward, and eat again. Sometimes my meals that don't get finished I just leave sitting on the counter; in an hour or so I'll go back and finish it. I've also noticed that motility is better. If I eat to the point of fullness (not uncomfortable fullness of course), and then walk around or even sit back with a cup of tea, 10-15 minutes later I can eat a little more. This is good for buffet restaurants, where I eat my small plate of food and finish before my husband is half-done with his mounded up plate. By the time he's halfway through his second plate and I'm sitting there bored, I can go have a dish of soup or a dessert (sugar-free of course!) or something - then we finish up at the same time.

I love to rearrange the furniture in my house, but heavy lifting is still off-limits. The last time I tried (a couple of months ago), I was in a world of hurt in the area of my wrap for 2-3 days afterward. I've since read that heavy lifting is never a good idea after a wrap, no matter how long it's been since the surgery. This isn't a huge issue to me anymore since the arthritis in my spine also limits lifting, but just another difference.

Raw vegetables was another thing my surgeon warned me against, both for digestibility and for gas issues. I can eat small amounts, but they do give me a bellyache if I eat too much, and they do increase the level of gas I need to get rid of. So I can eat them, but I limit them. Gone are the days of eating a whole head of cauliflower dipped in ranch dressing in one day!

Even though the early days were more difficult for me than most, recovery was slower and more painful, and I do have some (minor!) limits now, I would do it again in a heartbeat. And, in cases like mine where all else has failed, I would definitely recommend it. It is a major surgery, it is life-altering, and it physically changes the inside of our bodies, permanently. It has a fairly high failure rate (depending on who you ask), and can cause more problems than it was intended to solve in a few cases. For these reasons it isn't a surgery that should be taken lightly or gone into without a lot of research and prayer. But for me, it was literally a lifesaver and many times every single day I am thankful that I had the opportunity to get it done!

11 Months! #fundoplication

This is a post that I made to the Facebook Nissen Fundoplication group (a closed group but FULL of helpful people!) in reply to someone who wondered if life is ever normal again after this procedure. It pretty much sums up my life now, so I am reposting it here as my 11-month update.

"It's been 11 months for me. I consider it a 'new normal' and certainly 100% better than my 'life' (if I could even consider it that) before. I take smaller bites. I chew more thoroughly. I keep a warm beverage handy especially when eating things that I know have a tendency to stick (breads - even my home-made low-carb breads - and roasted pork mostly). I don't drink anything with carbonation and avoid caffeine. I keep simethicone tablets for when I eat 'gassy' foods because I totally love vegetables and they are a huge part of my diet as a low-carber. I have to stop eating at the first sign of fullness, or expect PAIN which I'm sure is a sign that there is pressure or stretching at my wrap - not a good thing if I want my wrap not to fail! I think that's about it. But it's all 2nd nature now, and it's normal now and certainly MUCH less restrictive and easier than how I had to eat before the NF surgery. . Back then I not only had to worry about what I ingested would cause but how it would taste or feel coming back up."

Here, I would add that prior to the surgery I was very apprehensive about what life would be like afterward. I'm a lifelong foodie. I'm happiest when I'm dealing with food, creating recipes and cooking and planning meals and grocery-shopping...and I was sure that all of this would come to a screeching halt after such a major change to my gut. AND I WAS WRONG. With a few minor changes as listed above, the foodie part of me still lives, and lives well! Even better, in fact, because I no longer get sick every time I eat!

This is a surgery that is considered a last resort, after all else has been tried, and especially where Barrett's is involved. (As a side note: less than 1% of people with Barrett's develop esophageal cancer, which is the greatest fear of many who have it. I have it, but don't fear it. There is a separate procedure where a surgeon can ablate the damaged tissue.)

So I know that nobody goes into NF lightly. It dramatically alters our digestive tract, and there's no going back. It has a higher failure rate (especially over time) than most surgeries, according to most. There is a long recovery, and no, life is not ever the same afterward.

It is hard when people are where I was a year ago, with their fears and anxieties...and it is impossible to fully share my joy in life now, compared to before, because their fears get in the way. And it is true that this surgery doesn't always have such a positive outcome, certainly; nobody can guarantee that everyone who has this procedure will have the same great results that I did. But I can - and do - happily share my own, and hope that it helps them :).

10 Months PostOp - and counting! #fundoplication

Things are going well. Very well. My appetite, and the amount of food I'm able to eat, is now about 75% what it was before the surgery. I guess my stomach is adjusting? I still have occasional trouble with pork for some reason, and hamburgers on buns (which I rarely eat anyway), getting these stuck. But the pork situation is getting better.

One experience I did have, last month, was AWFUL! I had run out of my anti-nausea pills (Zofran) because, while I typically only take 1-2 a month, I had to take 2 in a single weekend. On Monday I planned to call my doctor for more, but I didn't get to it, then woke up with a massive headache and nausea on Tuesday morning. I called my doctor for a refill of the Zofran, and was told I had to get it from the surgeon's office. I called the surgeon's office and was told I had to get it from my primary doctor. Meanwhile, I started retching.

Talk about PAIN! It was awful. And I'd heard of stories where retching could cause failure of the wrap, so I was also afraid...and it was only getting worse. I had no choice but to get to the ER. My sister called ahead of time and explained, so that I could get some zofran as soon as I got there. But first I had to explain to the receptionist - who didn't know about the wrap, why I couldn't just vomit...then had to explain again to the triage nurse but thankfully she did, and got me a zofran tablet right away, the minute I got to the gurney.

(My "roommate" in the 2-bed room was a MAN! I didn't know they did that, it wasn't very comfortable for me, but really I was too sick to care.)

I was there for 9 hours, during which I got an IV, 3 doses of dilaudid for the headache and stomach pain, and 4 doses of Zofran. The last doses they gave me one of each to carry me over on the hour-long ride home, and I had an instantaneous reaction of extreme severe itching all the way up my arm and shoulder, so I got a dose of benedryl in my IV also. I was half-asleep and dopey as heck for the rest of the evening from all the drugs, but at least the retching had stopped (although nothing they gave me helped the headache).

The best part is, they gave me an rx for 20 more Zofran tablets. Lesson learned...no way will I let myself run out of them again.