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.
