Giant Paraesophageal Hernia Surgery End of This Month

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cuicui
Regular Member


Date Joined Jul 2012
Total Posts : 35
   Posted 1/14/2013 9:51 AM (GMT -6)   
My paraesophageal hernia surgery is scheduled for the end of January. I am traveling out of state to have this done by Dr James Luketich, in Pittsburgh. I have a giant hernia, with 100% of my stomach and part of the colon up in my chest. I have no troubling symptoms, no pain, no swallowing issues, no bloating, or anything other than a slight wheeze on my left side at night. I am told that I am quite young for this procedure, with teen kids still at home. I am scared - not so much about the surgery itself, but for life afterwards. Reading this message board has helped so much!

So now, being 2 weeks out, I must focus on preparing for this surgery, and for our time in Pittsburgh. We are staying at the hospital's "family house", so am trying to figure out what comforts of home I should bring, as well as what types of food (liquids) I should bring with us. Has anyone had this experience, staying in a hotel/family house, for a number of days following surgery? If so, any suggestions on what to bring and prepare for that?

I will be on a pain pump in the hospital (probably morphine). I have never been on this type of medication before. Might be a silly question, but I watched my parents on morphine in hospice and they hated it and how it made them feel. Can anyone explain how they felt when using the pain pump?

Questions keep popping in my mind - I love coffee - will I be able to drink coffee after I've healed from surgery? Or will that always be off limits?

My husband will be staying with me in the hospital (that's the plan anyway). What things should he look out for, on my behalf?

I would love to hear from anyone that has had a giant paraesophageal hernia repair, and how the surgery went, their recovery and any long standing issues they now have.

As I said, I am very scared about this surgery. Any words of advice and experience would be most appreciated.

Deb Moore

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4978
   Posted 1/14/2013 12:01 PM (GMT -6)   
cuicui

Been there, done that - same place, same surgeon, same diagnosis. 3 1/2 years ago and SO glad I got it fixed!

I had a little reflux for years, then was in a bad wreck that pushed my stomach into my chest. It took me 4 months of jumping through the hoops of testing. I was really scared of the surgery, but knew I couldn't live without horrible symptoms unless it was done.

I was already in 60's but in good shape. I was in hospital for 4 days, left on liquids. Don't worry about bringing in anything unless you have food intolerances. I don't tolerate sulfites, so couldn't eat gelatin, popsicles, their broths and juices. I froze my own clear liquids and had a relative bring some the day after surgery.

I hated the pain button. They kept putting it in my right hand and I couldn't feel it or use it and dropped it. The cause was getting 4 sticks for a radial arterial line - sloppy. I used to do arterial sticks when I worked at that hospital. I couldn't swallow at all with the NG tube, but that was pulled the 2nd day, so not really much of an issue. You really don't want anything in your stomach, so don't sweat it. A relative could help you with finding the pain button. I had nobody with me, which was part of the problem.

You'll probably be on full liquids in a matter of days - clear liquids plus milk. Look up UPMC's post Nissen diet. It's online. When I went home I had to get my own food. I had things stocked up - Boost, mainly. I could only tolerate one a day because of my "allergies," but most people can consume it just fine. There aren't many places to shop in Oakland, but you have someone who can drive. They'll have to get your liquid pain scripts too, so locate the nearest pharmacy! They've got lots better stuff than morphine. If you've had experience with pain meds, make sure you take a list of your reactions with you to the hospital. I have two typed pages, including otc meds.

You'll be allowed coffee soon enough. Coffee and tea are clear liquids, without cream. I need my 2 cups of coffee!

Long-standing issues: only inability to vomit. Not really much of an issue. I quick chew up a Zofran if I am sure I am going to heave. I had a flu a couple of weeks ago - one that's not in the shot. I had dry heaves, but Zofran controlled it.

Hubby can look for the usual complications: bleading, breathing problems. Not much to worry about. This group of surgeons has a success rate higher than any I've read about. Recovery is a bed of roses, including some thorns. I wouldn't go back to having my GPEH on a bet!

cuicui
Regular Member


Date Joined Jul 2012
Total Posts : 35
   Posted 1/14/2013 12:52 PM (GMT -6)   
Alice,
Thank you for your thoughtful response.

Pain meds - sounds like you used to work at that same hospital. Is the care on that floor generally good, adequate, or poor? Is something like the sloppy line common for that floor? I haven't had experience with pain medications, so any recommendations as to what may be better than morphine?

My current medications are pills and capsules. I spoke with a nurse manager from Dr Luketich's office and she told me I would be able to either swallow small pills or we could crush bigger pills. She said the capsules will need to be changed to pills or if small, I could swallow. Will I be able to swallow anything like that? Are they aware on that floor that patients can't swallow?

NG tube - nurse didn't mention an NG tube. She said I would come out of surgery on the catheter, but no feeding tube (under normal circumstances). I asked about any other extra tubes or equipment, and she said nothing else. Is NG tube standard? Is that the thing that is so painful when taken out?

If I remember right, you had a toupet wrap, and not a full nissen - is that right? So even with a toupet you cannot vomit? I already told Dr Luketich I would very much prefer a toupet and not a full nissen. of course, I know he will do what is best (I hope so anyway), but felt I should make my wishes known.

I asked nurse if I am sent home with script for zofran and she said generally not. Did you get a script from your local doctor before you had surgery?

I sort of remember your saying that when you read your surgical notes, the docs had made comments about weight. If so, that really bothers me. I am about 30 pounds overweight, so granted, I have fat in my belly. But I would hate to think they are making comments about it while I'm knocked out.

Thanks Alice for all your help.
Deb

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4978
   Posted 1/14/2013 4:18 PM (GMT -6)   
Sloppy only meant that the artery should have been hit the first time. You won't wake up with this tube. It's only for immediate blood pressure during surgery.

I didn't have morphine. I was on Dilaudid immediately post-op, changed to Roxicet until I left the hospital. They must have changed policy if they aren't prescribing liquid pain meds now. Make sure to take at least a stool softener, probably even something stronger if you are on narcotic pain med at home. You don't want to get constipated! It puts pressure on the wrap. At home I was on a liquid narcotic a few days, then crushed Vicodins. It's easier to just chew them. You get used to the bitter taste. I know I need Zofran when I take most opioids. If you have ANY nausea post-op tell them immediately. They will normally put it in your IV during surgery, but you'll only get it when you ask for it later. Your home doc can prescribe it for you. I insist on keeping a little on hand for emergencies - like the flu.

They won't tell you about the NG tube. It's to drain the stomach during and immediatley after surgery. They'll pull it when they see there's no blood draining. It doesn't hurt. Maybe a moment when they pull it, not bad. Just don't try to swallow. It's NOT a feeding tube, just a drain.

Just go with what they do. They can't be absolutely sure pre-op. They have to get in there and see how much esophagus they have to deal with, because with the stomach in the chest it is hard to measure esophagus beforehand. It also depends on how well you swallow. I had polio as a kid, so my swallow is "wimpy." Therefore the Toupet. I did vomit once, but only a little and my stomach was full that time. I didn't even get any fluid up at all when I had the flu a few days ago.

Oh yes, I did read my notes. I was really embarrassed about the fat in my mediastinum. Worried too because if you've got fat there you have it around your heart. I was only maybe 25 pounds heavy too. I doubt they bother to comment about fat. They probably see it every day, and 30 lbs is nothing to them. The good thing about me reading it was I got serious about losing it. My cardiologist says I'm the poster child for dropping my cholesterol. I stopped eating bread, not hard since you don't want to eat that after this op. It's too hard to swallow unless it's toasted.

The mediastinum is the area in the chest where your stomach is now, up next to your heart. They have to go up in there and dissect the stomach, colon, and esophagus down before they can close the hole in the diaphragm. This why you want to have these thoracic surgeons, not just a general surgeon. These docs do thousands of these operations. It's not just a simple wrap. My surgery took something like 4 1/2 hours, not counting at least 3 hours in recovery. Tell the relatives to go get lunch. No use sitting around worrying.

You won't really want to see anyone after surgery for more than a couple of minutes, and limit it to no more than 2 persons, one at a time. You just want to sleep. They may be able to help you with the pain button or getting Zofran if you have nausea. Don't rush out of the hospital. Your condition is much worse than the usual simple Nissen. It takes lots more time to recover. It's life-threatening though, so necessary.

hrlee
New Member


Date Joined Jan 2013
Total Posts : 1
   Posted 1/24/2013 5:44 PM (GMT -6)   

I had my Para esophageal hernia and full Nissen surgery on 10.31.12 and outside of a few things feel great. Half of my stomach was next to my heart. The first 2 weeks where really hard on me. I was nauseated most of the time and dehydrated. It was really hard to keep drinking enough fluids. My surgeon said that the longer I could take to getting back to eating normally the better. So I stayed on liquids for over 2 weeks and then on soft foods for at least 4 weeks.

 

The NG tube was not as bad as I feared. It was only uncomfortable and weird feeling when coming out.  All I did was sleep and take 2 nausea meds and liquid percocet for 2 weeks after. I didn't visit with people very much when they came over and just didn't feel like it at all.

 

I few issues I have, I can't burp or vomit (just dry heaves) I get nauseated every time I try adding a new food to my diet. I get tons of gas and bloating feeling.  I usually have nausea 4 or 5 times a week at least still I hope this gets better. No one told me that I would have those problems on-going after surgery. BUT on the plus side on Christmas I was feeling so good I was able to run with and play and carry my 2 grandsons 1 yr and 2.5 yrs without pain, dizziness, or exhaustion.  I have to keep remembering to eat slow, small and chew, chew, chew otherwise it just comes right back up.  I drink as much water or juice as possible. I also to keep up with nutrition drink at least one instant breakfast everyday.

 

I feel 100% better, even though the surgeon said I should continue to take my protonix. I have not had to have ONE tums and have had NO acid reflex since. I breathe easier, my heart feels better. The doctors think that this surgery has also stopped my internal bleeding that they could not find for years.

 

I have enjoyed reading and getting information from people who have gone thru this, because doctor's don't tell you everything,

 


Trixie58
New Member


Date Joined May 2013
Total Posts : 14
   Posted 5/12/2013 12:46 PM (GMT -6)   
Hi all,

I am so glad to be reading your stories because after reading some other posts how this surgery ruined their life, etc.....I was ready to back out of surgery.

My surgery is being done in July. My surgeon is actually an esophageal transplant surgeon and has done more of these in the Phoenix area so I am pretty confident in his skills. He wanted to do surgery in March but because of my schedule was busy I am doing it in July. More than 2/3 of my stomach is in my chest and as long as I eat very small frequent meals I am pretty miserable.

I work a lot and have a demanding (desk) job and run a very large medical practice so I am trying to get a sense of how long others were in the hospital, how long before you were able to work, sit for hours, did you have issues with flatulence (if so, how much and how long did that go on?), how long before you were able to go on a (30-45 minute) walk?

In previous surgeries I bounced back very well. I am of regular weight and only have 5-10 lbs max that I can lose. Did you all lose weight? Did everyone have nausea? Are there any preventative treatments that you would suggest? I saw one person mentioned to make sure that you are eating small meals and chewing well. If you had an NG tube, was it put in after you were put to sleep?

Did everyone do a bowel prep prior to surgery? Did anyone have a pain pump that you administered yourself? I had one in a prior surgery (not related) and it was great. As a result I was never in pain.

Okay, finally when did you feel comfortable not having anyone around to help with your post op recovery needs? Like getting up and preparing your own meals, doing laundry, and that kind of thing. I am a very type A personality and like doing things on my own.

Thank you in advance to anyone that can give me your honest feedback about your experience. I realize we all heal at different rates but this forum definitely seems to be informed!

Kind regards,
Trixie

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4978
   Posted 5/12/2013 7:28 PM (GMT -6)   
Hi Trixie. Welcome to the forum. Keep reading the threads - see the search box at the top of the page. You'll find loads of stories.

Be really careful with a GPEH. I had one too. This is nothing to wait around on. The stomach can rotate, cutting off its blood supply, and you have only minutes to get rushed into surgery.

I didn't lose weight. I asked for something for nausea - can't vomit after surgery and it can tear if you keep heaving. I still can't vomit after 3 1/2 years. I can burp a little though.

NG is put in during the surgery.

You really don't want to go into this surgery with a full gut. Even if they don't demand it I would ask for a script for the prep.

I hated the pain pump. I couldn't feel my right hand because of the arterial line they stabbed me three times for and don't tell you about. I kept dropping the thing. I was in loads of pain and the nurses didn't care. Have a relative with you!

You aren't going to be preparing meals. Just open some broth, or a Boost if you are allowed. Meals don't happen for a while. Make up some soft foods with a blender or food processor in very small containers and freeze them. Forget laundry for at least a couple of weeks. You aren't going to be bending over. Hire a housekeeper. You aren't going to be driving until at least the followup visit.

This is major surgery. With GPEH you have to have it though. It won't go away on its own. Do not plan to go back to work too soon. I felt pretty bad the first month. I'm so glad I had it done though.

MaggieTheKatt
Regular Member


Date Joined Apr 2013
Total Posts : 20
   Posted 5/12/2013 11:38 PM (GMT -6)   
I wanted to add a few things regarding my own recovery experiences here. For reference, I had a toupet & hiatal hernia repair done 16 days ago. My hernia was about 4cm.

I did not have an NG tube. I specifically asked the nurse about it before the surgery as I was paranoid about it and she said the doctor only uses them in extreme cases or if something goes wrong. Maybe a larger hernia is considered an "extreme case", I didn't ask. I did have a catheter in during the surgery itself, but it was put in place and removed while I was under so I have no memory of it.

I was not told to do any kind of "gut prep" (laxatives, enema, etc) and ate a normal dinner (sandwich and chips from Jersey Mike's) at 5pm the night before the surgery and had water right up until midnight. I had no bowel problems post-op and had my first post-op bowel movement about 15 hours after getting out of surgery.

Didn't have a pain pump so can't comment on that. I did get both morphine and hydrocodone in the hospital. Both make you sleepy/woozy, the morphine will start working almost immediately since it is injected thru the IV. The hydrocodone they gave me in tablet form. It was a very large tablet and the first time I took one I didn't think to break it in half and it did get a little stuck. Had to drink a lot of water to get it to pass the wrap. After that I broke the tablets in half and they went down easier. Doc did say that they could crush them or give me liquid medicine if I really had trouble swallowing, but I didn't.

I have lost about 10-15lbs so far and expect to continue losing as I am overweight and only eat very small amounts at a time.

My surgery was on a Friday so I had the weekend to recover (went home the day after surgery), and my husband took Monday and Tuesday off work as well to be with me. After that I was able to stay home by myself no problems, could get up to make "meals" (heat up broth, scoop ice cream, etc.) I was doing laundry on Thursday. Could bend over fine, no pain or problems at all. I made dinner for my husband (not myself since I was still on the restricted diet) the following Wednesday.

I can burp (not belch) just fine and while I have been nauseous a few times since the surgery (they gave me a script for nausea meds when I was discharged), have not had to vomit so not sure if I can or not.

I have had a very excellent and easy recovery so perhaps I have just been lucky and am not the "norm" for this surgery. If you'd like to read more about my experience, see my thread " My Partial Nissen Fundoplication (Toupet) Experience -- A positive story"

opnwhl4
Forum Moderator


Date Joined Dec 2008
Total Posts : 4961
   Posted 5/13/2013 4:56 AM (GMT -6)   
As for NG tubes and catheters, it all depends on the surgeon and how complicated the surgery is. I had both with my first nissen and my esophageal tear surgery. I just had a catheter with both of my redoes. I was sent to ICU do to complexity and length of tear repair and redo surgeries and they wouldn't let my out of bed for a couple days. With my 1st nissen both came out the following morning after I had the barium swallow to be sure there were no leaks.
The only 1 I had an arterial BP line was with the tear surgery.

Take care,
Bill
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11
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