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opnwhl4 (Bill's) Post-op Nissen Redo - 3rd time around - 8/23/2011

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Posted 9/22/2011 12:32 AM (GMT 0)
BILL

Yeah!!! I am so glad to hear you are going to listen to your body.. I am happy to hear that you got a good report from the doc too!! At least everything that is going on with you is common.. according to the doc.. I do hope that you will be able to do all the things that you were concerned about doing before you had surgery... ..
I remember when I was a newby.. I really looked forward to the sage advice from you and Denise and Joy and of course... Kitt.. Thank You for being here for all of us...

Reach for the Sunshine.. Rainbows will follow...
Sandi
Posted 9/22/2011 2:00 AM (GMT 0)
I almost feel like I graduated. getting released by my surgeon. I also graduated from PT at the hospital on day 5. They had me walk up and down a set of stairs by myself.

He also did say that because of the esophagus repair and scarring that I might always have issues with breads. Only time will tell,

Take care,
Bill
Posted 9/22/2011 3:06 PM (GMT 0)
And Bill goes to the head of the class raising the bar yet again.  Yehaaaaa.  You inspire so many.  I am glad you are listening to your body as it whispers in your ear - take it one day at a time.

Gentle Hugs,

Kitt

Posted 9/23/2011 1:19 AM (GMT 0)
thanks kitt-
I keep reading how I inspire so many and am not sure how I do that. I have been through some rough times, but I try to stay as positive as possible and try my best to help others as much as I can. My real inspiration has been everyone here cheering me on or reminding me to follow doctors orders. Without you all I would be lost. I love how some of the new people have caught on to what the whole concept of this forum/second family is and without hesitation welcome other people and are there to share their experiences too.

I truly believe this site is the greatest on the web. Lots of love and hugs to anyone who needs it tonight!

I forgot how tired you can be after this surgery even after the incisions heal. I forgot who said it, but from the sound of the surgery people get the impression that because out side we are healed they can't comprehend how much still needs to heal inside.
Take care,
Bill
Posted 9/23/2011 1:32 AM (GMT 0)
Hi Bill,

I am relatively new to this forum but have been lurking around reading everybody's posts. I am so glad you are on the mend. I wish you many years of pizza without heartburn and no PPI's.
I think it's great that you keep a positive attitude through everything. That helps immensely. I've been struggling with that since this nightmare began. It sounds like you stay pretty active as well and that helps too as long as you don't overdo it of course. How long would you say it takes to completely recover from the surgery? Like completely? I figure you are the expert since this is your third time around ;) I just started Prevacid 3 days ago and am completely symptom-free but don't want to be on meds the rest of forever so we shall see what the future holds for me.


Take care and keep us all posted,
Liz
Posted 9/23/2011 1:45 AM (GMT 0)
BILL

You are an inspiration to us all because we can only imagine what you have had to endure throughout the last 5+ years.. first you have a surgeon who didn't know what he was doing and then you have the redo and it is successful but then they mess up your esophagus and you have to fight to get another redo and it is a full open not a lap..did I get all of that right??? WELLL HMMMM cannot figure out why anyone would look up to you or feel that you are an inspiration to them... You have steadfastly supported and cared about everyone that has come here needing your help and even though you have at times (with good reason) been down :-( , you have never dwelt on your problems.. explained and wondered why this had to happen, but never gave everyone a bummer of a day.... Just the fact that you could continue to hold up your head and say I am going to have a good day no matter what... That is inspirational...

I know we all have had problems and we all try to keep a good attitude about us.. it is just that you are sooo good at it.. grin ;-) and besides, we can all live vicariously through you.. we all want to have MAJOR SURGERY and go out and work on cars and lawnmowers when we are 3 weeks post op...
I hope you know that I am kidding with you... I have sons about your age and I can see both of them doing the same things you have done.. doesn't mean I like it.. you are such a good friend to us all.. take care and know we care about you...

Don't fight being an inspiration.. just relax into it.. grin ;-)

Reach for the Sunshine.. Rainbows will follow
Sandi
Posted 9/23/2011 2:34 AM (GMT 0)
Sandi-
thanks again for the kind words. You have taken to the helping people part so easily and do a great job. Thank you.

Liz-
around the 3 week mark the incisions should be healed, but it takes a good 6months to a year before everything inside is healed completely. Now that doesn't mean you will be on restrictions that whole time. after 4 to 6 weeks you can do pretty much anything you want and will probably be able to eat about anything if you chew very well and take small bites.

Take care,
Bill
Posted 9/24/2011 10:29 AM (GMT 0)
Hi all-
another sleepless night due to sleeping in to late. I get really bad sleeping habits in the hospital and have a hard time changing them when I get home. Plus all the years working Mids in the Navy and 3rd shift as a civilian. My body just can't figure out when to sleep.
I am beginning to think this disease is catchy. Michelle has been having really bad chest pains for a few months now and had a complete heart work up and all is well there. we are waiting for the GI office to call with an appointment. She has had problems for a couple years, but absolutely refused to go to the GI doc. She said after all I have been through she doesn't want to have the same thing happen.

Unfortunately she has seen the worst possible problems with this disease. She has been right by my side through all 3 nissens, the long stay after nissen 2 for complications. Wore herself out working and then driving 1.5 hours to see me for a couple hours and then driving 1.5 hours home to get 3 hours sleep and go back to work and come back to the hospital again after work. This was for the tear in my esophagus. She learned hoe to do all the feeding tube care and maintenance. Then with the 3rd nissen got a call at 2am that I was going back into surgery for suspected internal bleeding after being at the hospital with me from 12 noon until about 10pm.

I am so protective of her I probably would have to start drinking if she needs to go through even a quarter of what I have. I cannot figure out how she has stayed sane with all I have put her through. Especially the last 6 months. 3 surgeries (2 of which were emergency). 5 hospital stays that were a total of 51 days with 4 ER visits in there too. Not to mention her driving to hospitals alone when I was taken by ambulance or helicopter to a bigger hospital.

She is my inspiration to keep going and staying positive. Sure I have had to deal with the surgeries and tests, but she has had to do the waiting and wondering. 3 times I have had issues with coming out of the anesthesia and either was sent back to the ICU after an EGD or the latest when I didn't wake up much after surgery and had way low BP and was taken back to the OR.

Without her to be my support I really don't believe I would be nearly as positive as I try to be. She has always been there to keep me in check when I started to get down or upset. She has always made sure I take things 1 day at a time and be patient.

Oh and yesterday was our 22nd anniversary. Wow how time flies. We also dated off and on all through high school. So I guess we are soul mates. She is the only one I went with more than once. Think I even caused a few of her break ups from other guys. We met at the skate rink in 8th grade and it was love at first site I guess. Took me all night to get the courage up to ask her out.

Take care,
Bill
Posted 9/24/2011 1:14 PM (GMT 0)
Hi Bill,

You're so lucky to travel through life with your soul-mate.  I know how important that is, as my husband and I have been married for 38 years...I'm older, so I've got you beat!  It's obvious that Michelle loves you very much, as she is always there for you through thick and thin.

She has been through an incredible amount of stress, so I would not be at all surprised that she has some GERD.  We all know that it can be stress-related.  I think it's important that she see a GI, as there is always the possibility of an ulcer, and you'll want that taken care of.  When you describe her travels and vigils during your hospitalizations, it's clear that she loves you dearly.  Still, yikes!  There have been a lot of stresses, so GERD is a definite possibility.  Keep after her to visit the GI doc. 

Hope you find a time to get some cat-naps today!

Heal Well!

Denise

Posted 9/24/2011 2:03 PM (GMT 0)
Denise-
I'm worried about an ulcer myself. She gets bloated a lot too when she gets the chest pain. She can't lay down for very long because of the heartburn. I wanted to raise the head of the bed. but she won't let me. She saw our PCP the other day and she wrote a sript for nexium. Our insurance won't let us jump straight to that. We have to fail 3 others first. The only one she has been on is prilosec. I still have refills for dexilant and since you don't have to water before eating with it and it's very comparable to nexium I think we will try that first.

She has asthma and it's getting much worse. I think she is having the same problem you had with it burning her lungs. It took me quite some time to get her to understand how it could do that.

Take care,
Bill devil
Posted 9/24/2011 6:05 PM (GMT 0)
Bill, sorry to hear your wife is getting GERD, too.

I hope she doesn't have an ulcer, too.
Posted 9/24/2011 7:52 PM (GMT 0)
Sometimes our mates suffer as much or more than we do. I too am very grateful for my husband of 43 years. He's been my lifeline through the last two, nearly three years with all this GI stuff. Maybe the 'man upstairs' knows what he's doing in these cases.

Life is just so darn interesting sometimes. I can manage almost anything that happens to me in the daytime; at night I'm a big fat baby. lol That's where my devoted husband comes in like a light in the darkness. I don't handle nighttime pain and nausea very well and when the nausea meds don't work he really is my savior.

I know how happy you all our to have a good life partner during the rough times.

Bill, I hope your wife gets better soon.
I wish all the rest of you a good weekend.

Rita
Posted 9/24/2011 9:40 PM (GMT 0)
Hey, Bill. 

Have your wife chat with me regarding reflux and asthma.  My asthma doc gets very frustrated with GI docs who don't realize that even a small amount of reflux can cause a world of hurt for lungs.  Keep pushing for the elevated head of the bed.  That's probably the easiest, most effective thing you could do.  It's not the only answer, but it's one of them.

Hopefully the PPIs will help her.  You wouldn't happen to have a bottle of Carafate Suspension, do you?  That was created to cure ulcers, and it's wonderful for coating the esophagus and stomach.  It is expensive, though, so the copay is high.  The tablet form comes in generic, and it works fairly well if you put it in a medicine cup with a little water, stir it up into a slurry and throw it back.

Just a thought.  Hope you both are having a good weekend.

Take care,

Denise

 

Posted 9/25/2011 1:20 AM (GMT 0)
Hey Bill,

So sorry to hear that your Michelle is having issues with GERD. It really bothers you when your mate has problems that you could have written a book about. I too had been diagnosed with asthma back in the late 90's. I was to the point that my PCP's PA thought I was developing COPD..right before my surgery I had been on 2 rounds of prednisone for the wheezing and congestion... boy that was scary.. I was informed when the doc put in the capsule for the Bravo PH test, that my asthma was most probably reflux induced. I am almost certain that I have issues that will not ever go away because it was such a long time before I got the reflux fixed. I It is nothing to mess around with.. as of right now, I take nothing for asthma.. I do not even carry a rescue inhaler anymore...

I understand the concern we have for our mate.. my husband of 29 years in December.. has diabetes and he is being treated now for glaucoma.. he has neuropathy in his legs and feet and I am always picking at him about eating sweets.. I have to remind him that our granddaughter wants to grow up with a Papaw.. I know that is low but it is the only thing that reaches him...

Please urge Michelle to get the tests done and follow through with whatever the docs think she should.. I am sure you will refer her to all of us for care and support.. you are her live in support team.. ;-)

We are here for both of you.. have faith.. everything will be fine...

Reach for the Sunshine.. Rainbows will follow

Sandi

Post Edited (kyheart) : 9/24/2011 7:27:38 PM (GMT-6)

Posted 9/26/2011 3:40 AM (GMT 0)
Hi all-
Well today I managed to get up at a decent hour, about 7:30am, and have stayed up all day also. Found out last night I'm not ready for spaghetti. 2 bites and it was a functional dam, LOL! I keep trying to back off on the pain meds, but ultimately I just end up in much worse pain and it takes a couple doses to get things under control. I did ask my surgeon about this when I saw him Wednesday and he said e already expected to write scripts at least 3 times for the stronger meds and then back off to hydrocodone that I was taking for the ribs.

Thank you all for your replies and understanding about Michelle's issues with gerd. After what happened to me at our local GI group I am certain she will be very hesitant to have an EGD done. I think there is another GI group over in Iowa. Might have to check into that.

Take care,
Bill
Posted 9/26/2011 12:17 PM (GMT 0)
Hi all-
Well I got up at 6am this morning and instead of my usual get a drink of water and roll over and go back to sleep I am gonna stay up and see if I can make it the whole day with out any naps. If it doesn't rain today I am also gonna finish fixing the rearend on my truck and mow the grass. I have a lawn tractor, so it;s fairly easy.

Hope everyone has a great start to the week.

Take care,
Bill
Posted 9/26/2011 1:45 PM (GMT 0)
Morning Bill,

I am sorry to read of  Michelle's probable GERD and I know the 2 of you are always there to support each other.  She is a great lady married to one awesome guy ! Hugs to Michelle.

Happy anniversary and yes, how fast time flies by so hold fast to all your wonderful memories.  We have been married 40 years now but it does look like Rita has the lead with 43 years and Denise is right up there in 3rd place. 

I am sorry I have been hit and miss this past week.  Hubby is sick and stubborn.  Became sick last Monday but refused to see Dr.  Finally this morning he agreed to go into the clinic as he is short of breath now.  I try not to overthink but you know exactly how that goes. 

I am working hard at staying in the moment and not getting caught up in the "what if ?"  thinking.

I am thinking of you my dear friend and remember one day at a time. 

Many gentle hugs,

Kitt

Posted 9/26/2011 2:10 PM (GMT 0)
Kitt-
Thank you. Hope it's nothing serious with your hubby. And hope he get's feeling better fast. Please do stay in the moment and kick those what if's to the curb. Those darn things aren't good for anyone.
Hugs back at you, stay strong my friend.

Take care,
Bill
Posted 9/26/2011 4:07 PM (GMT 0)
Hi Bill,

I was just wondering if you are reflux free at the moment? Are you able to eat "trigger" foods yet?

take care,

Liz

Posted 9/26/2011 5:32 PM (GMT 0)
Liz-
I am 100% reflux free and have eaten spicy chicken, chocolate, drink tea, used hot sauce, used horse radish sauce, ate oranges, pineapple, also ate some pizza with pepperoni and sausage.

I am at the one month mark and the incision is healed very well and there is no pain at the incision. I do have quite a lot of pain in my stomach muscles about 2 inches out from the incision though. Also the area where he took apart my stomach from my belly wall due to the feeding tube I had is still painful when I lay on my left side.

I was given protonix at the hospital as a precaution and did take them twice a day for the first week home, but I haven't taken any protonix or PPIs for over 2 weeks now.

Take care,
Bill
Posted 9/26/2011 5:40 PM (GMT 0)
Bill-

I am soooo happy for you that you ate pizza! That was my one cheat food before GERD took over my life. We would do one pizza night a month, usually on a friday.  I had pizza (and lots of it) a mere 2 weeks before the reflux came on.  It is so weird how this whole thing starts.  How long had you had your reflux prior to your first Nissen? Did the PPI's slowly stop being effective for you?  Would you suggest taking PPI's for as long as possible prior to considering surgery?  I am 29 and get decent relief from Prevacid, which I've been taking for almost a week now. Still have occasional breakthrough for seeminly no reason at all.  I just wonder how long it will work for me.  I know there is a good possibility that if I had surgery I would eventually need a revision surgery as they last about 10 yrs or so. Just wondered what your take is on that. Sure would be nice to eat what I wanted again but I know surgery is not without risk and apparently some people still have reflux even after surgery and boy that would really depress me...more than GERD already has. Speaking of the emotional aspects of this condition, how is it that you have remained so seemingly positive through now 3 surgeries?  I am having a few difficulties coping with the impact this has had on my life. When I was really bad, taking care of my 3 yr old and my infant was very difficult.

Again I'm so happy for you and you definitely deserve this time without reflux:)

Stay strong,

Liz

Posted 9/26/2011 9:57 PM (GMT 0)
Liz-
I have had reflux since I was 18 or 19. I had my first nissen when I was 35. I tried all the PPIs before I had the surgery. Eventually I failed all of them. I then had a PH study and was twice the highest they had every seen. My score was just over 400. They said the highest they had ever had was 200 and something. As soon as they read my study she told me My best option was surgery. It was weird because I was going to ask her about the surgery since I wasn't getting any relief from meds and diet.

I then got a manometry done so the surgeon would know if my esophagus worked properly. I went to a surgeon who did my gallbladder about a year prior. I didn't know much about the surgery or what to ask the surgeon going into my first nissen. I asked f he could do the surgery and he said he could. turned out he didn't do it correctly and it took almost 3 years to figure it out. I asked the surgeon who just did my 3rd and he referred me to Loyola and to a great surgeon who specializes in swallowing disorders and nissen redos. My local surgeon sent me up there because no one here could say for sure what was wrong. My symptom was food getting stuck all the time. Here they dilated it about 9 times in 4 months and it never changed. I had 2 more dilations at loyola and finally they saw something they weren't sure of what they were seeing on a barium swallow.

My surgeon decided to do an exploratory to see what was wrong. The first thing he said to me in recovery was to thank me for keeping on him for surgery because it wasn't done correctly and the only way to fix it was to redo it.

Now after almost 2 years with a perfect wrap I had a follow up EGD for barretts and they tore my esophagus. That was 2/28/11 and I had surgery to repair it. To repair it they also had to put a stent in my esophgagus for a month. It was all the way through the LES to keep it in place. This held the wrap open for a month and tore apart the wrap. My esophagus finally healed completely in July. Had another manometry and it showed zero pressure at the LES. Had an EGD done and it showed a wide open LES and also it was not in the center, but off to one side.

I went back to the surgeon who did my lung surgery and had referred me to Loyola and since we knew what was wrong he said he would repair it. I had to have it done open this time because I had a feeding tube that made my stomach attach to my belly wall and with the other nissens and the esophagus repair he knew there would be a lot of scar tissue. I spent a week in the hospital, but haven't had any reflux at all since 8/24/11.

As for staying positive through this.....I have a very loving and dedicated wife by my side. I also have great support from friends here. I did go astray a bit before this redo, but Kitt, Denise, and Joy got me back on course. I do have bad anxiety and depression, but some how I manage to remember to take it day by day.

If our children were still toddlers it would be much more difficult. You are much stronger than you think just by being able to deal with the nasty symptoms while taking care of your children. My hat is off to you.

When I had my first redo I had to stay in the hospital 3 weeks because of complications due to the wrap being done wrong. They put 2 holes in my stomach and all was good the 3rd day so they sent me home and the next morning they started to leak and I had to rush back to Loyola. They wouldn't let me eat or drink and used TPN to feed me in my vein.

I had to stay in the hospital during the esophagus repair without eating or drinking for 3 weeks and was only allowed to have sips of water when I went home with a feeding tube for 2 more weeks. Then when the esophagus hole reopened I was back at the hospital for 2 weeks with TPN again which meant no eating or drinking again. Guess I kind of think of it as rolling with the punches and just trying to stay standing in the end.

Sorry this was so long, but i figured it was the best way to explain how I can stay positive.

Take care,
Bill
Posted 9/28/2011 4:40 PM (GMT 0)
Bill,

Wow! Thank you for sharing your story with me. You have certainly been through a lot and I hope you are through with health care issues for a while. 

I hate to hear that you had issues with reflux for so long before even having surgery.  It's scares me to hear that many folks have not had success with PPI's or that they have failed after a while.  I have a lot of anxiety about this whole reflux situation. When I tell my husband that I am 80% symptom-free, he's like "well that's good right?...you can live with that right?" and I'm like no I don't want to live with ANY pain.  Folks who don't have reflux just don't know what it's like to have heartburn all day long with no breaks.  They think oh heartburn I've had that. It's not that bad. 

On the flip side, I hear stories of people taking PPI's for years with complete relief of symptoms as long as they remember to take them and I think oh why can't that be me. I just have to remind myself that it could be a lot worse than it is for me or I could have some totally disabling condition.

Sharing your story helps Bill so thanks and I will pray for you and the others on this forum as I believe that helps significantly as well.

Thanks,

liz

Posted 9/29/2011 4:53 PM (GMT 0)
Hi Bill,

It's great to hear you are doing so well. I just can't imagine going through everything you have gone through and coming out so healthy and positive. It's something for everyone to aim for even if they're older. lol

I'm eating more of a variety but still not eating very much and that in itself is not a bad thing. Haven't weighed in a while since about 35 lbs weight loss and that's okay too. Still need to lose a lot more.

I haven't been around much lately again due to lots of reasons. My high school reunion started it and a string of company has brought it up to today. Life just somehow gets in the way of writing online but I do like to drop in now and then and see how everyone is doing and see who all the newcomers are.

Don't overdo and keep taking good care of yourself.
I'm very happy for you.

Rita
Posted 10/2/2011 10:50 AM (GMT 0)
Hi all-
Well I was able to eat a couple of the small cheese burgers from McD's last night. Just took small bites and chewed very well. I have found that some foods I need to drink something between bites to help it through the wrap and some are better without anything to drink until I am done eating it. Gonna start a list of which ones are better with or without something to drink with. So far I can say for me the cheese burgers needed something to drink with, but pizza goes down better without once it is cooled off a bit. Peanuts went down well without. I also had some pulled pork on regular bread and it was better with something to drink. It seems for me that soft breads need something to push them through, but so far I have only had a couple things really get stuck, but have managed to get them by with relaxing and patience.

Take care,
Bill
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