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

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Posted 10/2/2011 1:17 PM (GMT 0)
We went to a big annual party last night at a working ranch near our town and while I only ate a bit shaved prime rib it never did go down at all. It's still at the bottom of my esophagus. I don't get choked or start coughing till the next morning like today but I've been coughing for over an hour or longer. It's the second time I've tried roast beef and I guess it's just off my menu for a long time to come.

Anything I eat takes a very long time to clear the wrap except for liquids and the ever-present soft stuff and at 9 weeks that's why the surgeon ordered an EGD with my GI tomorrow morning.

I can do part of a hamburger pretty well as well; just not roast beef. I'd hate to think what real steak would co.

Glad you're doing so well, Bill.
Posted 10/2/2011 2:38 PM (GMT 0)
Hi Rita,

Beef is the last thing you'll be able to eat.  I know how you can get a taste for it...have you tried a crock pot?  Cook some carrot, potato, a little onion, some beef with some liquid (check online for recipes) for 10-12 hours, and it will become very soft.  The veggies will be flavored nicely and will also be very easy to tolerate.  Just stay away from any gristle, which of course, will not be chewable.

You've still got a lot of healing to do, so don't despair.  You'll be eating normally again.  It just takes time and patience.  I know it's hard.

I do know that some seem to heal quickly and eat easily.  I know of nobody who has gone back to eating normally by 9 weeks.  I do think that our younger friends here on the forum do heal more quickly--it just stands to reason. 

I had my Nissen at age 57, and it took me a good long time too be able to eat normally.

I'm two and a half years out, and I still have to be mindful of what I eat and how I chew.  Our wraps are a barrier between the esophagus and stomach.  Before our surgeries we were accustomed to being able to swallow things with no resistance.  That is not the case now. But let's look at the bright side!  That barrier is also keeping acid from refluxing into our esophaguses.  That's the whole reason we had the surgery. 

You've described how things can sit at the wrap site and reflux from there.  I hate to break it to you, but that can be a possiblity even after full healing.  I know it happens to me.  Sometimes I burp and it sends liquid and chewed foods up my esophagus and into my mouth.  I know it is not from my stomach because it's not a bit acidic.  The reflux part is only occasional, but the things sitting at the wrap site is pretty consistent. That's why I try to drink a lot of water after eating--to help move things through.  Also, I had a barium swallow a year ago and the radiologist reported that a small amount of barium was retained at the wrap site and moved up and down the esophagus, propelled by air from my stomach.  Sound famliar?

I still have to be careful with pills, as they can get stuck if I'm not careful.  I take my calcium and flaxseed oil in liquid form, because those pills are huge.  I also ask my doctors to prescribe smaller doses--2 lower dose tablets rather than 1 large dose.  If a pill doesn't come in a smaller form or can't be crushed or cut, I just don't take it.

I believe that at times I irritate my wrap and it gets a bit swollen.  At those times I can feel more water gathering at the wrap site.  If I drink ice water, sometimes I get a bit of spasming at the bottom of my esophagus. 

So, again, I'd suggest that you realize the healing will take a full year (and in my case longer).  Your upper GI will take time to adjust to its new configuration.  I was told that the majority of healing occurs in the first six months (and with that we're all individual) and the remainder will take a full year. 

You'll eat prime rib at barbeques again.  It just takes some patience and healing.  Just hang in there!  It will get better.  I know you've got some other issues that you're dealing with that adds a bigger challenge, and I can't speak to those.  However, what you're describing regarding your Nissen healing still sounds within the norm.

Keep the faith!  I'll happen! yeah

Take care,

Denise

 

Post Edited (dencha) : 10/2/2011 8:58:04 AM (GMT-6)

Posted 10/2/2011 2:54 PM (GMT 0)
Bill,

It sounds like you're doing great with your swallowing!  I remember when we first met you had trouble eating anything!  Still, you had a positive attitude which gave me the courage to go forward with my own surgery.  In my mind, the fact that you thought the surgery was worth doing even though you were having plenty of problems and it needed to be done again, it must be a good choice.  You had lots of issues, but could see through those to the benefits you were receiving.  Stopping the reflux was worth the struggles you had. 

I'm so glad that after all you've been through you're having good luck eating.  I'm sure you had some concerns.  Just take care of yourself, young man!  Don't go trying to be a hero and do something stupid that interferes with your great progress.  You know you've got a forum full of cheerleaders! yeah yeah yeah

Thanks for all your attention to the forum.  Doesn't it seem that somebody always steps up when others are under the weather?  I've been having back trouble and will be going to PT tomorrow to get some exercises.  I had a herniated disk in '95, and I don't want to go back there!   Sitting at the computer kills, so I can't do it for long.  I think all that picking up and carrying our little 23 pound grandson is taking its toll.  Use my knees?  Then they will go!  I'm falling apart!  Still, I want to be proactive and do those core-strength exercises. 

We've been stuck inside because of my horrible allergies, and we've been waiting for a renovation of our town gym.  Hopefully I'll be adding in some walking to the exercises, because I know that's critical, too.  I see my allergist a week from tomorrow, and will have a lot of questions for him.

Hope you have a great day today!

Thanks again for all you do.

Denise

Post Edited (dencha) : 10/2/2011 8:59:07 AM (GMT-6)

Posted 10/2/2011 6:57 PM (GMT 0)
Just a footnote so as not to hijack Bill's thread: the prime rib was shaved - not sliced and was paper thin and I ate very little of it and chewed it to a liquid. It doesn't seem to matter what it is, if it doesn't want to go down it just doesn't go down. I can manage it during the day but am unable to control what hasn't gone down by bedtime and that's when my only complaints occur. After 9 weeks it's hard to continue to cough and spit up thick mucous much of the early morning hours from about 3 am forward. I just don't get enough sleep and at 65 in about 3 weeks I need all I can get.

Thanks, everyone.
Posted 10/2/2011 7:25 PM (GMT 0)
Rita-
No worries about hijacking this thread. I feel this one can be a more surgery specific vs. the other large one being for anything on or off topic. that is what is so great about our little family here, we are very flexible.

I am beginning to think your wrap is a bit tight. I had your same problem with my first nissen and since mine was done incorrectly it was basically too tight. They may need to dilate yours sometime down the road if it doesn't loosen up itself, which can happen. At 9 weeks out it might be a bit early to dilate it though. I actually was having your same problem very recently. When mine was destroyed in march and the hole was off to one side, actually it was as far to the side as possible right against the side of my esophagus. Food would sit there and I want to say ferment and cause acid like symptoms. Same thing happened with my first, so I was able to recognize it.

Hang in there and hopefully you get some useful info tomorrow.

Denise-
I believe even with some troubles I will always have the wrap because it stops all that acid from coming up. I'd would much rather deal with the issues than live with the reflux. I actually had to tell both surgeons this before they would do either of my redos. I am not sure why I have been able to advance my diet quicker this time. I can't really compare my first redo because of the 3 weeks I spent not being able to eat. By time I was allowed to eat I was much farther into the recovery than normal.
It's hard to believe you still remember all that trouble I was having while trying to get my redo. Seems like yesterday to me, but it's been well over 2 years now. If this one was too fall apart tomorrow I would still try to get it redone.

Take care,
Bill
Posted 10/2/2011 7:38 PM (GMT 0)
Thanks, Bill. I'm glad you shared a bit with me about your problems with your first wrap being similar to what I'm experiencing. It's a lot of comfort believe it or not.

The first two weeks after surgery were painful due to the surgery but liquids and soft stuff went down fairly well. Now even liquids will sit there for hours on end. I know because when they do eventually go through I hear them and so does everyone else. lol But I also feel them go through.

When liquids go through quickly they feel to me like whatever temp they were when I swallowed them - hot or cold. When they go down later they feel neither hot nor cold - just sort of body temp like. Same thing with food whether it's hot or cold.

It will be interesting to see what comes of the situation and I don't expect to really learn anything tomorrow. I'm just doing what the surgeon instructed me to do. I'll be there with bells on and as I said we'll proceed from there.

I appreciate everyone's input here. That's why I've stuck around. I've learned something from everyone I've met. I do get more relative feedback from my three local friends who had the surgery some years back here at the local hospital and none of them went through anything similar to me with food getting stuck and just laying there.

Also a new friend - a friend of a local friend to be exact - had the surgery with my surgeon a week before I did and she's flying high. Not too tight, not too loose and no reflux of any kind. I know the difference between acid reflux and what I'm experiencing and it's like day and night. IF my food could get past my wrap in a timely fashion I'd be fine. It's the basis of whatever is going on with me and if it were just meat or beef I could just avoid them.

No one heals the same or has the exact same response to many other medical procedures and there is no reason to think there is a standard one must adhere to with this surgery - NF.

I think the jury is still out on this one. At least for me. Time will tell . . .

R.

Post Edited (halloweenbaby) : 10/2/2011 1:42:28 PM (GMT-6)

Posted 10/3/2011 8:25 PM (GMT 0)
Hi Bill,

I agree about dealing with Nissen quirks vs. living the way I was post-Nissen.  I couldn't have continued.  While I didn't have the typical severe reflux symptoms of most Nissen candidates, my lungs were in horrible condition and I was on very unhealthy doses of steroids without noticeable improvement.  I would gladly trade that condition for the quirky swallowing/water building up/being sure to chew carefully, etc. etc. issues that are part and parcel to the surgery for me.  I'm very happy I had the surgery, and like you, would do it again in a heartbeat.  I'm not going back to the way I was! turn

Rita,

I hope your GI doc appointment went well.

Take care,

Denise

Posted 10/3/2011 8:42 PM (GMT 0)
It did appear to go well today. The GI loosened my wrap, found more gastritis and inflammation and irritation just above the wrap where all the pain was located as well as all the other strictures prior to surgery.

He has me back on Dexilant which the surgeon unwisely took me off of because my gastritis is not good. The inflammation above the wrap site is going to have to heal but he did stretch/dilate the wrap and I'm hopeful what I'm feeling now is going to last. There is not as much pressure and pain although I can tell something was done to me.

I just hope I can sleep better tonight. He seemed to agree with the diagnosis of intra-esophageal reflux.

Thanks for all your kind thoughts, wishes, encouraging words and even prayers.

Rita
Posted 10/3/2011 11:50 PM (GMT 0)
Hi Rita,

Glad to hear that you were able to get some help and guidance from your GI doc.  Those of us with reactive stomachs and chronic or frequent gastritis do often find a need for PPI's post Nissen.  While the surgery helps stop the reflux, it can't help the gastritis. 

It certainly makes sense that you have irritation from that food sitting there at the wrap site.  Here's hoping that the dilation will do the trick.  It will take time for the healing to occur, but at least you're treating it, and with any luck the dilation will help your food to make it to the stomach!

Take care,

Denise

Posted 10/4/2011 12:04 AM (GMT 0)
Rita-
I had a feeling that they would dilate it if it seemed tight. I am praying for you it works and stays that way. Sometimes they have to do it a second time because it may tighten back up depending how much they dilated it. The way you described how you feel now is how it should feel at your point in recovery.

I also agree with Denise that it's no surprise the area just above your LES is angry from food sitting there all night for this long. I think going back on dexilant for a while is a good idea to help your esophagus heal faster. Please don't think of going back on a PPI for a while is a step backwards because it definitely isn't. Some times they error on the tight side which can be fixed vs. the loose side that can only be fixed by redoing it. Even if you do need a second dilation it's still better than having a nissen redo.

Since you are past the 2 month mark this was the perfect time to deal with the tightness. All the surgery swelling should be gone and areas affected by the surgery should be well on it's way towards healing. Sounds like you have a good GI doctor to compliment your surgeon. That was what was nice about when I had my redo at Loyola, my surgeon had a great working relationship with a great GI doc there at the hospital. If my barretts ever advances I am going back to Loyola and seeing that GI doctor again. He is said to be an expert in the care and treatment of barretts and displasia.

Take care,
Bill
Posted 10/4/2011 2:42 PM (GMT 0)
Thanks guys -

I had lunch and dinner and it went down and didn't hang up on the wrap. I had a good evening for the first time since long before the surgery and slept better last night with much less coughing and although I'm still making way too much saliva I was able to swallow it and it also went past the wrap instead of staying in my esophagus all night.

It makes sense now that what was causing the same symptoms before the surgery was the last stricture since the bad inflammation in my esophagus yesterday was the same place all the other strictures have been. The only problem I noticed last evening was that the Dexilant didn't seem to go through the wrap quickly enough. The GI told us yesterday to take it in the morning first thing but I hadn't had one in several days and the gastritis was so bad I didn't know if I could sleep without taking one so I took it about 8 or 9 pm. Bad idea. When a pill of any type doesn't go through right away my nose burns really badly. Dumb, I know, but that's what happens. I'll take the next one in the morning.

I knew something wasn't right as far as food going down as it should. I too have wondered if this will "hold" as Bill said. I have a fairly good memory and remember reading some of Roman's posts and I believe it was he who said he had his wrap stretched at Mayo (maybe) and it lasted just a short while. So, I guess what he and some others and now Bill referencing it being stretched again I won't be surprised if it doesn't last and might have to be done again. I need to call my friend Judy and ask if she ever had to be dilated; I honestly don't remember ever talking with her about it. She lives in my hometown.

It was 9 weeks yesterday - or 9 Mondays anyway - since my surgery. And since very early on I had to deal with the symptoms I had till I came out of the dilation yesterday. It was one of the roughest things I've ever gone through including all the other surgeries. I'm grateful for being able to swallow my food and for it to go through. I do realize it may not last but I'll cross that bridge if and when I come to it.

Right now I'm sitting in my living room looking out at what may be the two last roses of summer here in Oklahoma just outside our big picture window and they are probably the two most beautiful roses we've seen all summer. The weather right now is just perfect for growing just about everything and it's a beautiful sight to see.

Thanks again to all of you for being there. It means a great deal.
Rita
Posted 10/9/2011 2:54 AM (GMT 0)
Hi all-
I got a lot of sun today at the ball diamonds. Daughter subbed for a local team that is in a college exposure tourney in Chicago. So I have a sun burned nose and ears. I also found out I can eat hot dogs, even was able to eat the soft bun without any problems. I even ate a couple bites that were just the bun without the hot dog. I sure wasn't able to eat this at 6 weeks the first 2 times.

I do have to call my surgeon on Monday. The top part of my incision is still a bit sore and still swollen. It actually is swelling farther up my sternum. He started the incision about an inch on my sternum and now the swelling has gone about an inch or so above the incision. I figure this may be normal, but I want to ask him to be safe.

Take care,
Bill devil
Posted 10/9/2011 1:16 PM (GMT 0)
I'm so glad you're going to get the incision looked at. You're doing so well I know you'd hate to have anything go wrong now. So glad you're staying on top of things.

I guess we'll begin tomorrow with the local GI and see what he suggests since the dilation failed. I'm choking and coughing more now than before the did the procedure a week ago. I try hard not to wake my husband up in the night since he too needs his sleep but I had to last night. The nausea was really bad and if I move I start trying to throw up and he has to get the nausea medication.

I've done this with my best game face for close to 10 weeks and it's time to see if anything else here or elsewhere can be done to help my food get past the NF wrap site.

You're so very blessed and I couldn't be happier for you. Thanks so much for replying to my email about other clinics and doctors to possibly consider consulting with.

Take care of yourself as I'm sure you always do.
Rita
Posted 10/9/2011 1:40 PM (GMT 0)
Good Morning Bill,

"Take me out to the ball game............♫♫♫♫♫♫♫♫♫♫♫ "  I am glad you were able to eat a hot dog........home run for you my friend.  Watch that sun and make sure you have 209 SPF sun lotion on ........says the lady with the skin cancers from to much sun in my younger years.  Dang that makes me sound really old.  devil

 

My daughter and granddaughters will be in Iowa somewhere next week-end.  :-)

 

Have a great day !

♥♥♥♥☺☺ ♫ ♫ ◊ ◊ ●_● Kitt♥♥♥♥
Posted 10/10/2011 3:02 AM (GMT 0)
Rita-
So sorry the dilation didn't work and things are worse now. You've been through so much already and deserve relief. hope the GI has a plan to help you.

Kitt-
I really need to start putting something on my nose when I am at the ball diamond. My sunglasses reflect onto my nose and every time it peels I manage to get burned again.

Take care,
Bill
Posted 10/10/2011 1:33 PM (GMT 0)
Rita,

I am sorry things are not good and I hope you can find some answers with your local GI.  10 weeks is a long time to go through so many problems so keep us posted on how you are doing.

Bill,  Yes do sunscreen the heck out of your nose.  I have had many pre-cancerous areas on my nose.............it seems my nose is closest to the sun.  LOL.

kindly,

Kitt

Posted 10/10/2011 3:23 PM (GMT 0)
The local GI called early this morning with the biopsy reports which were benign. The nurse was surprised the dilation only lasted about 36 hours. She said I do still have acid and esophagitis of some kind in my esophagus near the wrap. The GI had marked the spots on the paper he sent home.

Hubby and I both thought he'd want to schedule an appointment but the nurse just said she'd tell him what I said and she would call back this afternoon. If he just wants to medicate me without giving me an actual diagnosis hubby says this won't do. All he did for close to 20 years was medicate me and tell me to come back in a year.

We are checking into some other options at this time depending on what his nurse calls back and says.

I think since I'm not a textbook case that I've pretty much run my time out here as far as having anything positive to contribute or really being able to learn much more. My acid reflux from my stomach is much better but something is still tearing up my esophagus.

I do appreciate the help each of you have tried to offer as well as the encouragement.

I'll drop back in when I know for sure what's going on.

Take care,
Rita
Posted 10/10/2011 3:33 PM (GMT 0)
Hi Rita,

Have you considered getting a second opinion from your surgeon or even another one?  Perhaps something hasn't settled correctly, and there is something that needs to be done to correct your problem.

I'm sure it's very difficult to deal with all of this.

I wish you all the best.

Denise

Posted 10/10/2011 3:41 PM (GMT 0)
Surgeon says everything is fine. We'll be checking with someone soon if we hear "wait and see" again this afternoon from the GI.

I can't taste my food, swallowing is a problem, it gets stuck in spots all the way down to the wrap site and stays there. I've lost 45 lbs now and have no appetite because I cannot taste anything.

We'll be looking for another opinion as early as tomorrow according to what the GI says. After all the time and expense of the surgery one would think the GI and surgeon would get together and discuss things but I guess not. I can't make them do anything but it would be nice if they could consult about my case.

I'll let everyone know when I know something for sure. None of my hometown friends who have had the surgery have experienced anything similar to me.
It is a mystery. :)

Rita
Posted 10/10/2011 11:11 PM (GMT 0)
Rita,

I am sorry to hear that everything has just fallen apart for you. Taking care of your own health is the golden rule around here so I understand why you must put your energy into finding a Dr. that will be able to help you.  You have contributed a lot to the forum and I wish we would have had ideas to help you with what is happening right now. 

You have a very complicated problem that I feel  some Dr. out there is going to  know exactly how to help you.

Take care and do  check back in to let us know what you find out.  I wish you peace.

Kindly,

Kitt

Posted 10/10/2011 11:16 PM (GMT 0)
The GI did call back and said I still had acid in my esophagus during the EGD. He doubled my Dexilant for 2 weeks to try to heal the esophagitis and the gastritis as well. I think my surgery should have been done a long time ago before so much damage had been done. That's water under the bridge now however.

We're actually concerned that the small amount of Trazodone I've used for sleep - 25 mg -for so ong at night might have been contributing to some of the symptoms I have continued having. We'll stop the Trazodone for a while and see if I improve while taking the double-dose Dexilant.

He is concerned but wants to be conservative in his approach while we're okay with for now. He is also concerned about the continued weight loss and lack of appetite.


Thanks Kitt.
I appreciate the kind words.

Post Edited (halloweenbaby) : 10/10/2011 5:19:37 PM (GMT-6)

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