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Trying again to be patient Post-Nissen

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Posted 9/10/2011 3:25 PM (GMT 0)
I need to take it slower and give things much more time to settle down after my August 1, 2011 NF.

Please be patient with me and also try to support me if you have time.

Thanks,

Rita
Posted 9/10/2011 4:58 PM (GMT 0)
I'm sorry the link is not working, but if you're having this problem you might have too tight of a wrap. Your doctor will be able to tell if it's too tight. If it is he'll have to dialate you some.
I think I remember seeing that you did have a manometry study, so I don't think you should be having trouble with it coming back on due to motility problems.
I wish you luck and answers come Monday.
Posted 9/10/2011 6:13 PM (GMT 0)
I also found a thread dated from February 1, 2011 by "Spike" which I had read before my own August 1, 2011 NF.

I posted on that thread even though it was long and I told the person how much I appreciated re-reading his/her journey.

I do think I still expect to feel well and recovered at 7 weeks and I know this isn't possible. Once again I'm going to try to slow down and be more patient.

I'm also going to try heat on my wrap site after I eat to see if that aids the food in making its way through.

Thanks.
Posted 9/10/2011 8:04 PM (GMT 0)
Hi Rita,

 

You are so right that 7 weeks is far too early to be thinking about total recovery.  You're at the very beginning of your journey.  Keep in mind that it will take a full year or (even more for fine-tuning) for things to get as good as they are going to get.  That's a long time, and will require all the patience you can muster. 

I would suggest drinking room temperature or warm water/tea to help relax your esophagus and facilitate your swallowing. 

I know it's hard to just lay back and trust your recovery.  Just do the best you can to bring yourself to a place where you can surrender to it.  Don't try to hurry it along, or "chafe at the bit" to get back to a more pre-GERD normalcy.  The more you struggle against it, the longer the recovery will seem.

I know you're working on that.  Just keep acting "as if" you're patient and relaxing into whatever path your recovery takes, and before you know it, you'll be believing that all is well and that you're on the right track.   If it's not something that comes naturally, it'll take practice, but you can do it!

Happy healing,

Denise

 

Posted 9/10/2011 11:05 PM (GMT 0)
Thanks Denise. I was really bad for so many years before the GI doc ever suggested surgery that I really got run down and worn out and so many things from age 54 to now are just a blur. I just did my best to get through the day.

I think I'm beginning to adjust to the fact that this really IS going to be a very long process and some of the anxiety over that fact is going away. You can only stay hyped so long and you have to face the facts and settle down. I also went back on my old sleep med and it seems to be helping my attitude and improving my patience.

Just got home from Tulsa and a nice early dinner of soft veggies. lol My husband says I'm a cheap date these days because I eat so little and bring half of it home for the next day.

I think if I could handle milk products I'd have more energy. My diet ends up so limited when I have to cut out dairy. I'm going to try soy shakes again soon and try to improve my energy and stamina.

I really related to the post by Shipboy and the long journey of Spike on HW and reading their stories today helped me a lot.

I really do appreciate your kindness in responding. It made my day.

Rita
Posted 9/11/2011 12:37 AM (GMT 0)
Rita,

Please try to resist editing comments and retitling of threads as it does make it hard for members and all visitors to follow your threads.   If you could go in and post an addendum it would be better for us to follow.  ((((Hugs))))

You have our support and caring so writing what you feel at the time it happening is part of the healing process my friend.  We were not designed to carry the weight of our own struggles without the help of our friends and loved ones.  Trust us to be kind and honest and not judgemental.

Just keep taking babysteps, one step at a time .

Blessings,

Kitt



Posted 9/11/2011 2:15 AM (GMT 0)
Hi Rita,

 

Tell me about it.  I know exactly what you mean.  Like you, I'd spent many years suffering with GERD--in my case creating very unhealthy lungs--even being hospitalized for GERD induced asthma.  It is hard to be sick for so many years, and those of us who come to this surgery with that type of history are so anxious to have it work, that the recovery is a scary experience.  Every "heartburn" feeling we get creates a fear that our surgery is a failure.  Believe me...it's an experience shared by most who have gone the surgery route.  Very few go forward with this type of surgery without having a very good reason.  Most who post here have suffered for many years with severe GERD symptoms. 

Since most surgeons do not properly prepare their patients for the length and difficulty of the recovery, it comes as a shock to anyone who hasn't researched it thoroughly.  I've been working on this forum since my own surgery two and a half years ago.  In that time I've seen that most people are not aware of how hard and long the recovery is.

It sounds as if you are working on relaxing and going with the flow.  Believe me, I understand the challenge.

Unfortunately, anyone with a fairly tight wrap will have some food and drink held back at the wrap site.  Try to drink water after eating--it'll probably take drinking over some period of time to help all of the food through the wrap.  At seven weeks your healing is incomplete, so there's a high probablility that your wrap hasn't settled properly into place yet. 

Have you considered going to your GI doctor again and dicussing your fears and discomforts?  He/she might be able to shed some light on the subject.  From what I have heard there is a pretty fuzzy line between the responsibility of the surgeon and GI doc in post-op care.

Happy Healing!  Hang in there.

Denise

 

Posted 9/11/2011 11:29 PM (GMT 0)
Denise, I'm still under the sole care of my surgeon at this point. I see him tomorrow (9/12) and will know more tomorrow.

I've actually had about three pretty good days in a row except for last night. I tried another protein drink and once again it made me nauseous even without milk in them. They literally make me so sick I have to take Zofran which I did last night. I never eat or drink anything but water after about 8 pm and we turn in about midnight.

I did feel much better after the Zofran and we made it to church services this morning for the first time in several weeks. I went about 3 weeks ago and got there and was too weak still to sit through the whole service but did enjoy it today.

I am doing much better back on Trazodone for sleep and for the little bit of benefit derived from it as an anxiety medication which is helpful to me now.

Thanks for replying.
Rita

Hi Kitt,

I'm sure as things settle down for me I will be a better poster. :)

Rita
Posted 9/12/2011 4:03 PM (GMT 0)
Hi Rita, I think you and I thought this surgery was going to be a piece of cake, at least, I thought that. I am still healing and I am into my eight month and according to Denise and Joy and many others, I still have a long way to go. I am going with the flow though….I have to.
I never thought after the surgery I would feel better. I talked my family to death that no one wanted to hear me anymore....so I stop talking to people and started talking to myself. What I did was count the days to that year that everyone talks about...where I am going to feel better. I didn't see significant changes until my 5th month. At 7 weeks I was still in tremendous pain, I had terrible shoulder pain, couldn't sit for long, can only lie on one side of the bed all night long (and it wasn't the side I like to sleep on). I was afraid to leave my house. I also had to take clonazapam to calm me down. I didn't want to go anywhere. I was consumed with this surgery.
On a brighter side, you made it to church and out to dinner. It seems as though we both want security because of who we are. I need security in my life to function. If you knew for fact that you are going to get better but it would take some time, you would be okay, however, there are no guarantees and you must believe that you are going to get better. Your anxiousness is not helping you. Trust in God that you are exactly where you ought to be right now. It’s hard to think that way when they are so many road blocks. Hang in there, give it time. Time is your healer. You have many many wonderful supportors here on this forum.
Lots of Love
Cindy
Posted 9/12/2011 4:14 PM (GMT 0)
Rita,

You are a good poster right now........................  :)

 

Trazodone has been the one great drugs in my life as I used to have a horrible time sleeping but this medication has been a lifesaver for me.  I am glad it is working for you.  I use 150mg every night for sleep.  No bad side effects that I have encountered.

Not to be able to sleep at night always sets me up for having a really bad day the following day.  I am glad to know you are doing better on this med.

You deserve some major breaks right about now.

Gentle Hugs,

Kitt

Posted 9/12/2011 9:36 PM (GMT 0)
Hi Kitt and Denise

Another good day under my belt. Learned a whole lot from the surgeon this morning about what my post-op symptoms actually mean and it was a good conversation. Hubby went with me as usual and it was a very productive 30 minutes.

I go back and read some of my posts from about week two forward and they do sound off the wall and hyper. That isn't the kind of person I am at all. I'm normally the take-charge person. I'm a public speaker, a soloist of many years at church and I'm a steady hand that my family and friends turn to. I'm the leader of things in some of the organizations I belong to. I'm normally very outgoing, friendly, supportive and an encourager of others.

I'm a music buff and a big lover of history. I love to dance - hubby and I have for years. We've always traveled a lot and as I've said before I wrote for my hometown newspaper for over 10 years sometimes two columns per week. I've interview many celebrities for my column and have written five books about the history of my home town.

I have only looked for answers to my GERD/reflux problems in the last 6 months or so online because my GI had never suggested surgery. I mostly just read old threads till I found HW. Since I couldn't call my GI or my surgeon every day after surgery I've stayed around HW to glean whatever comfort or info that fit my particular situation and it's been all in all pretty helpful. I'm very appreciative of everyone and all the information.

My surgeon said this morning that I have a "flaky stomach". He said my long history of acid and bile from childhood is indicative of that. Also the fact that I developed really bad bile acid diarrhea even before my diseased GB came out nearly 17 years ago is indicative of the imbalance in my digestive system.

He also took a good bit of time explaining the functions of the Vagus nerve and how any kind of abdominal or digestive tract surgery impacts the nerve and its functions even if it is not damaged. He was so helpful and so informative and it really explained a lot to hubby and me that we had never realized till he spoke with us today.

I came away feeling much more at ease and comfortable with my slow progress because my surgeon was very pleased with it due to my age and previous stomach and digestive issues.

I am however, impatient due to being somewhat of a go-getter type person who is used to accomplishing a lot in a short time. The doc explained the need for becoming more patient in this area of my life because it is out of my control except for diet.

He told me to concentrate on the things in which I can affect the outcome and try to think less about the post-NF stuff over which I have so little control. I will be working on this for sure as I have been doing for nearly a week now in earnest. Doing what both you and he suggested in this area will be easier now that I'm not in so much pain and am able to eat more and more of a variety of foods.

He was also pleased that the only medication I'm taking now is 20 mg of Trazodone at night and in the morning. I react well to small amounts of medication and opposite as I should to many. I don't take it to sleep. I don't need it to sleep at all but I do sleep better when I take this small amount and the sedative/calming effects of it help me as well even in a very small dose. I had stopped it a couple of weeks ago because I was only using it for sleep purposes and I could sleep without it. I think even the tiny amount I take was helping me more than I realized.

I've had a busy day today with lunch out of town with my sister, a couple of shopping trips which included more walking and more company this afternoon who just now left.

I am very grateful for having 7 full weeks of recovery behind me and I do think the worst of the early adjustment period is over. Now, as time moves along I do realize that every day will not be the same quality of day as it was before the acid took over my life 11 years ago. There will be ups and downs and the surgeon told me today that I will be "normal" again; it will just be a new normal and I'm fine with that.

Thanks to both of you for replying to my post. Now I'm going to go help hubby fix dinner.

Rita :)
Posted 9/13/2011 12:35 AM (GMT 0)
Rita,

Awesome and I am so glad you had the chance to talk indepth with your Dr.  It really helps to have a Dr. you have a good trust relationship with.  Your day sounds very successful.

Thank you so much for posting an update and keep on doing what works best for you as we are all happy to read of your good days.  We understand about the not so good days too.

In friendship,

Kitt

 

Posted 9/13/2011 7:10 PM (GMT 0)
Thanks, Kitt.

Am having another good day and that's great because the night was a nightmare compared to today.

I ate a couple of little oatmeal cookies - soft ones and very small - last night about 8 pm. Rah-Roh! Wrong thing to do. I was nauseated all night and the Zofran didn't stop it because it was nausea from above the wrap.

I'm assuming once again that the cookies didn't go through the wrap. I'll refrain from late snacking especially with a cookie but it's a done deal now. I get so horribly empty and hungry between my 6 pm dinner and bedtime. I get so hungry it almost hurts.

I'll have potato soup made with rice milk tonight and I'm sure tonight and tomorrow morning will be better than last night.

Live and learn.
Again. :)

Rita
Posted 9/24/2011 1:43 AM (GMT 0)
Rita, just checking in on you. I hope you are still seeing signs of improvement. I was away on vacation and then back to a hellacious week at work but I have been thinking about you a lot. You are still in my thoughts and they are that you will continue to heal.
Posted 9/24/2011 2:14 AM (GMT 0)
Rita-
I too am wondering how things are going now? Hope all is well.

Take care,
Bill
Posted 9/24/2011 7:23 PM (GMT 0)
Hi guys -

I wish I could say all is well. I don't come around HW much anymore since I'm such a drag and I don't want to discourage the many people for whom the surgery will fix everything.

I'll be seeing my GI this coming week to try to address the issue that continues to cause me problems and that is Hypersalivation/Water Brash.

I had GERD alright but somewhere along the line in the last couple of years I went from extremely dry mouth to all this excess saliva which has only gotten worse after NF.

I can tolerate it during the day although it doesn't allow me to eat much or to taste my food but during the nighttime it becomes unbearable. I choke and cough and spit up saliva and other debris that has remained above the wrap site and my esophagus swells and hurts.

I get no more than a couple of hours sleep per night and at 65 next month that is not enough to keep me going. My husband is a jewel getting up with me when I am coughing and choking and also doing his best to stay awake with me when I'm not sleeping.

We both keep hoping and praying that something can be done to stop the excessive swallowing of these copious amounts of saliva and other liquids made in my mouth and throat but so far no luck.

A couple of interesting things we've uncovered is that the only med I've taken until recently actually causes hypersalivation and one I stopped earlier this month actually helped treat it just as a side effect of how it works. I'll be stopping the former and adding back the latter to see if it helps.

I still do not feel as if I have acid reflux. This is a horse of a different color and one I'm growing very tired of riding especially since I cannot sleep much at all. We really need sleep for the brain and body both to recuperate overnight and help us through the next day.

I hope that you are both doing well. I wish so badly I could have been a textbook case but it was not in the cards and that's the way things go sometime. I continue to enjoy reading the old posts of so many still on the forum who weren't doing any better than I was in the early days of their recovery. I think it's kind of like giving birth; you forget how bad it was after a while and only remember the good stuff.

It's nice of you to stop and say hello.
Rita
Posted 9/25/2011 4:52 AM (GMT 0)
Rita, don't stay away from the forums. You need us and others need you. Your story can always help someone else that is going through similar. Your posts never bring me down, they make me think about you that much more and hope for your wellness.

Hopefully this saliva issue is one that can be dealt with fairly quickly and easily. Let us know what the Doctor does.

You are welcome to email anytime. Lillye and I have been going back and forth via emails and phone calls and it really helps for that added support. You can join us via a conference call anytime you would like.

Hugs
Bethanie
Posted 9/25/2011 10:58 PM (GMT 0)
Rita, I had excess saliva whilst on Omeprazole - but Lansoprazole doesn't set it off for me. It's not an uncommon drug side effect, so I think you're on the right track there.

You're quite entitled to feel as you do, and we're all more than willing to listen. I can think of times in my past that just felt interminable and hopeless - yet with the benefit of hindsight they are boxed up and buried inside me as something short-lived. Can you find anything you can do to help this time go by more easily - or at least to have something to show for it? Any project like sewing or sorting photos, something that we all put off because of lack of time, that kind of thing. (I have something I made when I had shingles - and I was in terrible pain, but I never would have made it if I hadn't had all that time off work!). I know your energy is very low, but have a think whether there's anything that'll help you get through to the point where you look back on all this........ I think they call it "occupational therapy" !!!

We're all wishing you well.....

MMM
Posted 9/29/2011 7:01 PM (GMT 0)
Things are better, thanks. I'm back on a PPI and see the GI on Monday for an EGD at the behest of the surgeon.

I do stay busy with church, my creative writing and with my family and friends. I am my high school class historian, am on the history museum board and several other activities; I just haven't felt much like enjoying them for some time. Hopefully that is changing.

My lack of sleep has been a real problem due to not being able to wear my CPAP from all the esophageal congestion which the GI will look into on Monday. I'm hanging in there. Might as well since I have a great life, family and community in which to live.

I'm very grateful the acid reflux seems to be gone because the local reflux from my esophagus is enough to handle right now. lol

A good sense of humor can really help.

Rita :)
Posted 9/30/2011 10:10 PM (GMT 0)
Rita, I am glad there is at least the tiniest bit of improvement and that you are staying as busy as you feel up to. Let us know what happens on Monday!
Posted 9/30/2011 10:32 PM (GMT 0)
Thanks so much. What appears maybe to not have gone away after the NF is the symptoms of LPR which I only developed in the last couple of years. Monday will be the first time to ever bring up that topic at all with my GI. I always knew I had GERD (after I learned what it was) but I never complained much if any at all about what now appears to be ongoing LPR. I understand that LPR is not always fixed by NF surgery. Hopefully I can learn something new or find some answers on Monday.

I appreciate your interest.
Posted 10/1/2011 11:46 PM (GMT 0)
Rita,

I am sorry I have been MIA but hubby was in hospital............forgive me ?

Don't you dare stay away from the forum as you are not a drag or discouraging to the members.   That is just the " stinkin thinin " of anxiety so kick it to the curb and know that we are all here through the good, the bad and the ugly days.  We celebrate the good days with you and we are here to listen and support you when your down.

That's what friends are for so you just keep on posting.

Monday is almost here and we will all be waiting to hear what the GI has to say. 

"A friend is one who strengthens you with prayers, blesses you with love and encourages you with hope."  You are a friend to all here in the forum.

Gentle hugs,

Kitt

Posted 10/2/2011 1:26 PM (GMT 0)
Hi Kitt! So good to hear from you. I did post you about your husband's illness on another thread somewhere but I couldn't tell you where it was now if I had to. I'm so glad he is home and doing better and that you're back. You're always such an encouragement to everyone and I've missed hearing from you. Blessings on this front.

The anxiety about the whole thing (NF) really isn't that bad anymore. I'm managing to get my sleep as long as I have my daily 25 mg of Trazodone; I just can't take it or any other pill within a few hours before bedtime or it won't go down at all.

The whole problem now is that just about everything gets stuck at the bottom of my esophagus just above the wrap and whatever is still there when I go to bed at night just stays there and chokes me with excess saliva that is thick and hot and vile tasting. It's not acid but it's not good.

If the GI can't help with a diagnosis tomorrow we'll be seeking help elsewhere.

I'm so glad to see you back.
Rita
Posted 10/2/2011 5:20 PM (GMT 0)
Hi Rita,

When you see the GI doc and describe what is occurring, I'd guess he will look into stretching the wrap a bit to make it looser.  Surgeons have a balancing act to do...make the wrap tight enough to keep the acid in the stomach, but loose enough to allow food to pass through freely.

I would suspect that more testing may be in order.  If virtually nothing at all solid is able to get through the wrap and this gets worse at night, I'd also wonder how your swallowing reflex is doing.  As it tires through the day, does it become less effective?  A manometry might provide some information there...it would also be able to measure the strength of your wrap, I believe.

If you haven't already done it, write a list of questions, so you don't forget anything you want to ask.  Maybe you should sit down with your husband and brainstorm those things that are a daily issue and that you need help understanding.  You'll want to know if your GI doc can help resolve any of the issues you're struggling with.

I hope you have a very productive visit.  Let us know what your GI doc has to say.

Good luck!

Denise

Posted 10/2/2011 7:05 PM (GMT 0)
List already made. I've never been accused of being unprepared. :)

Just waiting for 11 am tomorrow. I doubt that the GI will know much about the tightness of the wrap since he doesn't do surgery himself. Still it will be good to know how things look in the nether regions and we can proceed from there if things don't loosen up eventually.

I'll report when I know something productive.

Thanks again.
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