Sunday, December 1, 2013

Today Is My 3 Year Wrapiversary!

Yup, 3 years ago was the surgery that changed my life! Not a whole lot happens anymore that is worthy of blogging about, life is settled into a routine and, though not a day goes by that I'm not thankful for my wrap, I don't really think about it a whole lot. I may or may not repeat myself here :)...forgive me if you've heard any of this before, please? Life after 3 years means I'm eating nearly everything I want; exceptions are still caffeinated coffee and carbonation. However there isn't a vegetable that I can't eat, I can eat bread without issue, and even chocolate in small amounts. Limits are more about quantity (about 60% of what I could eat before the op) than type of food. And, of course, always chewing WELL and swallowing small amounts at a time. I am always more comfortable if I eat several small meals in a day, rather than 2 large meals and 2 snacks. That doesn't mean my schedule allows for that always - only that it is the ideal. I can burp. When I'm on my left side in bed. And, I have discovered, when I lean over the left arm of my chair to retrieve the TV remote. This will be more helpful in restaurants than spreading myself out somewhere on my left side I'm sure. (I just have to remember to bring my remote!) I have had heartburn. While my surgeon had said that my wrap would keep anything, including air or acid, from coming up, I have learned in the Facebook support group that other surgeons claim our wraps should return us to normal functioning - and normal functioning includes burping and occasional heartburn. My heartburn is VERY occasional, and almost always only when I have drunk way too much coffee (even though it's decaf), or when I've eaten too close to bedtime. I also had some heartburn from one of my newer prescription meds nearly every night. It was only after some weeks that I read all the warnings on the bottle, one of which was to not lay down within 10 minutes of taking. Since I took it about 30 seconds before laying down, that was easily resolved. There are ways that I know that my wrap hasn't been compromised, which is something that comes to mind every time I burp or whenever I experience heartburn (slight though it is now). One thing is that I still can't vomit. I still have an antiemetic to use whenever I start to experience nausea, to avoid retching (which can cause a wrap to fail). Another way is that I still get food "stuck" every so often. It isn't something that happens often - but dry foods are still problematic if I'm not careful (which I almost always am). And of course, no pain - no choking on acid - no burning in my throat waking me...no signs of GERD! Is NF for everyone? Absolutely not. In fact I have grave concerns that some doctors are recommending these for heartburn relief, similar to Tums. I'm seeing more and more people online who still get relief in other ways - such as sticking to a certain diet for example - whose doctors are all too ready to cut into them with promises of going back to work in a week, describing the op and the recovery period as something akin to wart removal. Yes, I am seeing a lot of this, and a lot of people in pain and confused and sure something is very wrong because when they were discharged within a few hours of this MAJOR surgery they weren't feeling perfect within days! Even surgeons who refuse to prescribe antiemetics or pain meds after the first couple of days...it is truly heartbreaking what this surgery has become: an easy sell to uncomfortable patients and an easy buck from their insurance companies. There are other issues with NF. If you've followed this blog from the beginning you already know that it is no walk in the park. I plan to address some of my concerns with a series of videos. I have begun vlogging (video blogging) and find it to be a good avenue for getting information out to people, so in addition to this blog, I plan to discuss various aspects of getting, and then living with, a full wrap. I will share here when I post any of these occasional videos. Thanks for sticking with me for 3 years :). It surprises me that some people have been following this blog from the beginning, such a long time...I'm thankful that I can come back and check on details, since I have forgotten so many as time has passed, which was the original purpose, a diary of sorts. But people tell me every week that they are reading and learning from it, I am very humbled! And now begins year 4 - GERD-free!

Tuesday, July 23, 2013

NF related Blogs

There aren't very many of us who have blogged about our experiences, but I thought I should post here about Debra's great blog! She shares how destructive GERD can be to our health and our lives, and how she found relieve and a new life after her Nissen Fundoplication. Excellent reading, and I recommend it highly!

If you know of other blogs besides the ones I've mentioned here, please leave me a comment and I will review it - thanks! :)

Wednesday, January 2, 2013

Post Operative Expectations

It seems that a lot of people have questions or even fears about the changes that they will see in their lives post op. As did I.

There are certain things that many of us are simply unable to do. My own surgeon was excellent about preparing me for the possibility that I couldn't tolerate some foods afterward, as well as advising me against certain foods (to contribute to the long-term success of my wrap).

The things he specifically warned me against were anything that would cause certain changes within my system, such as caffeine and alcohol. He also told me that I should never again drink carbonated beverages due to the amount of pressure the ingested gases would put on my wrap, or drink through a straw because of the amount of air that is ingested with the beverage.

The foods that he told me to prepare myself for being unable to ingest afterward were bread, raw vegetables, and "gassy" cooked vegetables. He advised that I could start trying them after 6 months, but to understand I probably wouldn't be able to stand them, and if they did cause pain from pressure that I was to avoid them completely.

Other things that people seem to have long-term difficulty with are pork and rice. I had trouble with pork for a fairly long time. As a low-carber rice isn't something I eat regularly (although when I'm going to splurge it is one of my favorite splurge-foods - with LOTS of butter!), but I didn't have difficulty with it. Maybe because of all the butter :).

He also told me that the majority of people who have this done will not be able to burp or vomit afterward - this should be considered a given. If you are one of those who are able to get air back up through your LES after your NF, you are in the minority. (NOTE: with time, some wraps will loosen somewhat and allow air to escape upwards; however, this means that stomach contents - acid - can also escape upwards, and this is not ideal obviously.) Remember, the intent of the Nissen wrap is to prevent the LES from allowing ANYTHING to go back up into/through the esophagus. That is the whole point of the procedure, after all.

For those who do find themselves able to burp, many are able to enjoy beer or sodas. (Definitely consider this the exception rather than the rule, however.) Whether this has any long-term effect on the integrity of the wrap, I don't know. I do know that with the fairly high failure rate - or shorter lifespan - of so many of these, my own choice has been to avoid anything that might contribute to an eventual failure. But some surgeons advise their patients that they may resume all normal activity and dietary regimens after complete healing. I'm just one to err on the side of caution with my own wrap :).

I've only mentioned the more common adjustments that most have to make after NF. Everyone has different results afterward and what is true for one will not necessarily be true for another. It may be wise to go into it accepting that we probably won't be able to drink carbonation or eat bread or raw veggies or caffeine or whatever...and then accept it as a wonderful gift if we find that we are indeed able to do so after we have healed.

Monday, December 17, 2012

Two Years...and Counting!

As of December 1st, it has been 2 years since my Nissen Fundoplication. Life has settled into a predictable rhythm, digestion-wise, and there has really ceased to be anything new to report here.

My plan now is to turn this entire blog into a pdf file; I understand there are ways to do that. And I will keep it available for anyone who would like it. This is a popular site with a lot of hits, and I want to keep my experiences available for anyone who wants to read them. When I was considering, and preparing for, my own NF, I would have loved to have something like this to read!

For my final post, I will briefly mention how I'm doing now, what life is like 2 years post NF, and then I will iterate a few points that need to be emphasized. I administer a large and very active NF support group. (It is private, and on Facebook; contact me if you wish more information.) In this group there are several recurring shared experiences that keep emerging, and those are what I will share here.

But first, what life is like now. Because I realize that in the weeks and months following an NF, it seems like things will NEVER get back to normal. But if all went well, they will :). At 2 years I can say that my wrap rarely gets my attention. I now eat everything that I ate before, without issues. I can't handle carbonation; too much raw onion causes pain, as does more than a few bites of chocolate, and caffeinated coffee - those are my only limits. (I don't drink alcohol, so can't comment on that.) Everything else, including bread and raw vegetables, I can eat. How I eat is now habit: no drinking through a straw...small bites...chew forever...swallow only small amounts at a time. "Sticking" is rare now. I am eating my 75-80% fat/15-20% protein/5% or less carbohydrate diet, occasionally adjusting macronutrient ratios as needed. Restaurant food doesn't bother me. Fried food doesn't bother me. Junk food doesn't bother me (on the RARE occasions I've had it). It is all good, and I am as normal as it gets.

One other thing I want to mention about life now is that I am never without anti-nausea medication - ondansetron - or simethicone for gas. They go with me everywhere. Not being able to vomit or belch (I do burp occasionally now) assures that I will always need these.

OK - there are a few points that anyone considering an NF needs to think about. I am not a doctor, and I don't give medical advice. But I will share some things that many of us have shared together in the NF support group, things that are important enough that they keep coming up as topics.

First, many people don't realize that this op's purpose is to repair a physical defect (or more if hiatal hernia is repaired at the same time). Do homework. Ask LOTS of questions of your doctor, of his staff, of people who have had the op, of surgical nurses who have observed it - ask questions of anyone who has any experience with it. While everything you are told may not be 100% accurate in your case, it will give you a good broad understanding of the op, how it works, and how your life may - or may not - change.

"In your case" - 3 important words. Because while there are a lot of similarities in recovery, each one is individual and can vary. Some will bounce back rapidly; others will need several months, or more!, to resume activity without pain and exhaustion. And we have no idea what it will be like for us until we get there. And doctors are different as well! There are many contradicting sets of instructions that they give their patients, especially about diet and activity afterward. Some are very conservative and careful, some treat the surgery like a walk in the park (and patients can believe something is very wrong if they undergo a normal, lengthier recovery), and probably most fall somewhere in between. Believe it or not, our surgeons don't even have all the answers about how OUR recoveries will go, what our abilities will be, and when; as a doctor told me, "I don't have a crystal ball." We have to assume responsibility to relearn our bodies' languages; hunger/thirst/satiation signals may all feel very different, and sometimes we may not recognize them for a long time, for example.

We can't push ourselves. We only get ONE CHANCE to heal properly. To healing, my own doctor told me that the first 6 weeks are crucial - the first 90 days are extremely important, and it will take up to a year, or more, for complete healing - BUT the first 2 weeks are critical! It is during this time that, for instance, retching can permanently damage the wrap, according to some of our NF support group members' doctors. It is so so easy to be impatient with the healing process and want to hurry on with life. We may want to just do a couple loads of laundry, or just mow the lawn real quickly, or just try that hamburger...but are we really willing to risk going through the entire process again? For me, it wasn't worth it. My doctor advised me, then my body told me in no uncertain terms whether I should do something or not! When in doubt, I always took the path with least risk to my new wrap.

Don't let anyone minimize this. Clinics and some websites have cartoon booklets that describe it as a minor procedure, even outpatient. Most people who have had it will agree, that is not the norm. This is a "major assault on the body" (in my surgeon's words). We undergo general anesthesia, which carries its own recovery time, plus our digestive tracts will be relearning how to manage nutrition. I personally find it awful that some doctors will do this surgery on an outpatient basis; to be fair, it seems to work out more often than not. However, I personally wouldn't want to be discharged until I could control my own pain, until my wrap was proven by both experience and tests to withstand digestion without problems, and I could get around ok. And if I were any distance from my hospital, that would be even more reason I'd not want to be discharged too soon. (I'm aware that not everyone has control over this, but it is something to consider when choosing a surgeon - will he be reasonable about the first couple of days of recovery? or push me out the door as soon as I wake up? Mine made sure I met the criteria I just listed before I was released - very reassuring to me!)

Pain: Naturally some people feel pain less than others. We can't know until we've had our ops what our pain level would be, of course. But most doctors are great about making sure your pain is controlled :). A personal note: I learned that many narcotics are constipating, and straining will stresses the new wrap - not a good thing (especially in that critical first 2 weeks)! During the first few months there are all sorts of sensations and pains as the body adapts to its new way of doing things, while working on the healing process at the same time. If you are in a support group, you will get an idea for what others have commonly felt as well :). Obviously, our doctors are the best source for us to consult for any pain post op!

Eating: The one thing I learned is to eat until I'm no longer hungry, rather than eat until I am full. Big difference. The volume of food I take in now is about 60-70% of what it was before. It isn't uncommon for wraps to fail in time, and I don't want to do anything at all to hasten my wrap's demise! And I want to also say that my doctor, while very conservative in most ways, did want me to try eating some "real food" just a few days post op. My gut instinct was not to do it, but I tried a little soft poached fish anyway - trusting him more than my own instincts - and endured quite a bit of pain; I knew instantly, with the first couple of tiny bites, that it was a mistake. After that I learned to trust what my body was telling me; if it said it was tired, I stopped whatever I was doing and rested. If it said it wasn't time for [any given food] yet, I didn't try it.

I hope that the things I've shared from my own experience, and the collective discussions of group members over the last 2½ years will help you to have a realistic view of what post op life is like. As I always say, we are all different. But knowing what others have gone through and shared can sometimes help to realize what we may expect.

And this concludes this blog. If I have anything to add, I will append it to the pdf file. I will post here where that will be available for download, once I get it completed.

Final disclaimer: Choose your doctor carefully, for s/he will be best source of information for you. Nothing I have written in this blog should be construed as medical advice, and information that I have shared has come from various sources, such as my own personal experience, the experiences of others with whom I have a relationship of some sort, a conglomeration of information learned from various online resources (this is a blog and not a research paper, so there is no bibliography but be assured I only have used hospital, doctor, patient, and reputable medical sites for my personal research) - so consider this as you weigh your personal choice to rely on the statements you've found here. By all means, always do your own research, using sources that you trust. I have typed as if I were chatting with friends and not as if I were writing medical articles, so don't try to make anything in this blog into something it is not.

12/12/12 - I want to add one paragraph to what I wrote yesterday, this is something I posted on the Facebook NF group. Sometimes when we compare notes people can feel a little deflated when they hear about the "super-healers", and the super-healers can also have a hard time understanding those who seem to have more pain and lower tolerance for food and activity for a longer time afterward. These are my thoughts:
Just an observation upon reading these threads...I have said it before but especially for new members or those considering this op, I'll say it again: Definitely we see over and over and over again here how different people are in their responses to the surgery! Some can't eat well, and don't feel like themselves, until a year after surgery - some bounce right back and are doing things normally within a week or two. Neither of these extremes is wrong or bad in any way - just that, like most things, the vast majority of people will fall somewhere in the middle. Probably a lot of reasons from doctor experience to our own fitness/health before the op to how we follow instructions during healing...but MY OPINION is that each one of us that has a successful outcome had a "normal" healing - for us. What will be for one may not be for another, in weight loss, in stages of diet, in pain levels, in activities, but the successful outcome in the end is what matters, and our individual experiences getting there are all normal for us individually if the end result is what we were seeking.

Sunday, October 7, 2012

A Glitch - PAIN!

Friday morning I had to get up at 5 to take my husband to meet a bus about a half hour from where we live. Afraid that I wouldn't hear my alarm, I didn't sleep well, only got about 3 hours of sleep. AND I didn't take a ranitidine at bedtime as I usually do. (Lots of acid in my stomach causes pain, even though it can't come up anymore.)

I was so tired when I got up that I made my coffee with half of hubby's, so I had half leaded and half unleaded coffee to drink. Then we ate at Burger King for breakfast while waiting for the bus. They have those little round hash brown bites, and they were really good. I ate my (carby!) sandwich, did fine. Ate some of the (carby!) hash brown bites, did fine, got full, stopped eating them (hubby finished mine).

Got home and spent the morning singing. I rarely sing more than a half hour or so at a time; today it was closer to 2 hours.

When I got up from the keyboard it felt like somebody stabbed me right in the wrap! I have not had pain at my wrap site in so long...almost took my breath away. Don't know what caused it, though! No ranitidine the night before? Junk food? The leaded coffee? Those 2 extra little hash brown bites? The long singing session? I don't know but it HURT and I was pretty miserable :(.

Yesterday I felt ok when I got up - until I started doing things, and ate. Pain back, with a vengeance! Decided to eat a soft diet...didn't help. Just awful, about equivalent to my pain levels a week after my surgery.

Today I got up, all was well. In fact, throughout the day, all was well. Thank God! AND I think I figured out the pain: In the wee hours before we left on Friday morning I saw that my cat had pooped WAY back in the corner of the back room, there is a pole about 16" out from the wall holding up the front of a 42" tabletop that's attached to the wall, with a big heavy bookcase in front of it. So to clean it up, since I can't get down on my knees anymore (arthritis), I had to bend, r-e-a-c-h, s-t-r-e-t-c-h, and twist my body, all at the same time. It was uncomfortable as I was doing it...and I'll betcha that's it, and the REAL pain started a little later!

That's my best guess anyway. But today I am fine, no trace of a problem. Just thought I'd report this here. As time goes on and life is so normal, we may forget that things are different inside. My doctor had warned against heavy lifting after my op, and I'm guessing for the same reason I probably shouldn't bend, r-e-a-c-h, s-t-r-e-t-c-h, and twist my body!

Monday, October 1, 2012

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 :).

Friday, June 1, 2012

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!