New Member - John In Seattle

Hello everyone, I am new to the board.  I had the lap surgery on July 16th and it has been a complete week for me now post surgery.  I am a 49 year old male who was on Prevacid and/or Nexium for GERD for over 6 years and I have Barrett's esophagus.

 

First of all, I want to say that this board is a godsend.  I was going out of my mind my first night home after surgery and truly thought I wanted to kill myself or die I was so miserable.

I hated myself for having the surgery because I was in so much agony.  That evening, I found this website and I couldn't help but break down crying in relief that I wasn't the only one going through this.  So I thank each and every one of you for your posts.  I have been reading all of them and I feel a bond with you each of you on some level even though we do not know each other.

 

Because I was so blessed and touched by what others have shared, it is now my turn to share my experience thus far.

 

I had the surgery on Wednesday July 16th (Nissen lap with full wrap)  I spent one night in the hospital and was released one week ago today.  That evening was the most miserable night in my entire night.  I felt like I was suffocating and choking to death and I felt like I was going to explode from within.  I didn't know it at the time, but evidently I had so much gas inside of me that had not passed yet, that it made me feel this miserable.  I didn't get any sleep at all that night.  Finally around 4 am on Friday I called my doctor and he told me what was most likely causing the problem.  He told me to walk around a bit if I could to help release the gas.  I did and finally around 5 am the dam burst.  I know it sounds vulgar but it was blessed relief.  I have never been so glad to fart in all of my life!!! :)

 

I had excruciating pain in the left shoulder for the first few days even with the pain meds.

Finally over the weekend, that pain began to let up.  I still have it especially in the evenings but to a much lesser extent.  For the first 5 nights out of the hospital, I set up a chaise lounge with lots of comforters and nice sheets to sleep with my head raised up - otherwise I felt like I couldn't breath.  As of Tuesday of this week, I am now able to sleep in my regular bed, but I still prop my head up with pillows.  I normally sleep on my stomach but have been sleeping on my side of back due to the steri-strips/wounds as well as being able to breath better on my back or side.  I'm not sure what I do during the night but I tend to wake up and I'm on my back.

 

Today, one week from the day of release from the hospital, is the first day that I've gone a full day without pain meds.  For the first 5 days I took both the naseau medicine and the pain killers as soon as the time frame allowed.  I started tapering off yesterday.  I do have some nausea and pain this evening so will take a bit of both before going to bed to help me have a restful night.  My doctor told me to not worry about getting addicted to the pain killers, that was my concern. 

 

I've lost 5 lbs the past week.  I have been drinking protein shakes for breakfast, lots of water and room temperature green tea during the day that I fortify with dissolvable fibre powder that doesn't thicken up.  I've been eating lots of sugar free diet pudding and jello, yogurt, applesauce, and cottage cheese that I pureed a bit at first and am now able to eat small curd as is.  I have been making lots of soups for dinner.  My favorite is ground chicken meat that I brown with some pureed green onions and mild spices and then pour in chicken broth. I then puree the whole concoction to my desired texture.   It is very satisfying and savory.

 

I'd like to share one of my recipes that I created on day two when I had a craving for peanut butter.  I was skeptical at how it would turn out but it is wonderful.  Take 3/4 cup cottage cheese, a few tablespoons peanut butter, a tablespoon or two of honey, and whir in a blender.  If you don't like peanut butter, you won't like this, but if you love peanut butter like me, this will be like eating peanut butter mousse - yummy.

For the first five days I had no appetite whatsoever and was able to only eat tiny bits at a time.  I find that my appetite is begining to increase and I'm able to eat a small bowl of soup at one meal which I consider to be great. 

 

I'm taking liquid vitamins which I highly recommend to anyone since we're truly not eating a balance diet at this point.  Centrum makes a good one and it's easy to find at your local drugstore.  I am also adding fibre powder that doesn't thicken to my teas and beverages.

 

I'm finding since I'm off work due to the recovery, I am staying up until about 11:30 or midnight and sleeping until 10 am or sometimes longer even up to noon.  I am allowing myself to do this since I know my body needs rest in order to heal. 

 

Yesterday was the first day I left the house since the surgery to visit with some friends.

Even 2 hours out was tiring.  I am taking short walks each day and doing household things in order to build my strength.

 

So, that is my experience and progress over the last 8 days.  Yes, I had the one miserable night where I wished I hadn't had the surgery but now I can say that I am so glad I did.

I am completely off the Nexium and have had no reflux whatsoever the past 8 days.

 

Yes, I pass gas now like crazy but everytime I do, I think about that night where I wasn't able to and how miserable I was, and now I thank God with every fart that I am able to do so.

 

And, I do want to mention in closing that I am able to burp little burps.  The first one came a few days ago and totally caught me by surprise.  It hurt a little but I thought "Wow, I can burp!" 

 

So, I wish each and every one of you health and healing in your body.  I thank you again for the encouragement given to me by these pages and I hope that somehow what I have shared will help someone too.

 

So let's all hang in there together cuz we're gonna make it!!!

 

 

 

 

 

 

 

 

 

Hey John,

I also welcome you to the site and thank you for sharing your story.  It sounds like you are healing nicely, thank God. 

I was wondering where you had your surgery?  I will be having the Hill Repair at Swedish Med Center in Seattle in August by Dr. Aye.   If you haven't heard of the Hill procedure, it is another type of surgery to cure acid reflux that isn't quite has radical has the wrap.  This procedure is only done in the northwest by a few doctors.  I actually live in Florida, but will fly to Seattle to have the surgery.  It's ironic that I was actually born at Swedish hospital back in the dark ages and grew up in Seattle.

I was also wondering about why you got Barretts E since you were taking the medications for 6 years.  Were you aware that the medications weren't working as well as they should, because obviously you still had acid exposure.  That's really why I'm having the Hill done because I can feel acid reflux even while taking Nexium for the last two years.  I also cannot tolerate the side effects of the medications.     

Best wishes as you recover and keep us posted on your progress.

Sillylilly (Carolyn) 

Thank you for your warm welcome. I honestly feel like I have found a new extended family.

Carolyn, isn't is a small world? Yes, I have my procedure done at Swedisy by Dr. Louie. Dr. Louie and Dr. Aye are partners in practice and they are top surgeons in this field. You are in excellent hands. You won't recognize Seattle if you haven't been here in a while. Swedish is HUGE and sprawling - there are elevated walkways and tunnels that go from the hospital to all the various medical towers that span blocks and blocks - it's amazing. If you have any questions about finding his office or anything else, please do not hesitate to ask me. I honestly don't know how I developed Barretts being on the medication. I do know that I had acid reflux for at least two years before going on Nexium but that might have something to do with it. My gastroenterologist has been talking to me about the surgery for over two years but I honestly didn't want to have it done so I put it off until my last endoscopy revealed that my Barrett's was getting worse and I knew I had to go forward with getting tested for the procedure. Keep in touch and again, if I can help in any way, please don't hesitate to ask.

Janice, sounds like you had a double whammy with your gallbladder and your hernia surgery. I definitely encourage you to find the Centrum liquid vitamins, any drugstore should have it. I'm also on Lexapro for anxiety and my pharmacy had that in liquid form as well. Are you able to shower? I find that hot showers and then a cup of herb tea really help with the pain and tension. You are in my thoughts and prayers as my "same surgery date" sister.

Yesterday I had the worse case of the hiccups and man, it hurt! I took the nausea medicine and that made them go away immediately, I should have taken it sooner. However, it gives me hot flashes (and I'm a guy - haha) and I sweat like a pig after taking it. I do find myself quite frequently trying to catch my breath. I don't know how to explain it but it's like a hiccup but not a hiccup. Do you know what I'm talking about?

I still have the pain in my left shoulder. I have to say that the correlation between the C02 and the pain in the left shoulder fascinates me.

I hope you all have a good day and I'm thankful for you, my new friends.

John

John...Isn't that something that you went to Swedish also, and Dr. Aye's partner.  On another message board there are two people who also had the Hill procedure from Dr. Aye and that's how I found out about him.  They can't say enough wonderful things about him and the staff at Swedish.  I know I'm in good hands now.  Seattle has really gone out of sight as far as expenses are concerned, also.  I know I'm in for a real shock when I get there.  Thanks for your encouragement and I'll be praying for a speedy recovery for you.

LadyJane...we get around don't we...I've seen your name on the other message board.  Best wishes to you on your recovery also.  I'm going to check out the liquid vitamins also.  I haven't taken my multiple vit for a long time now.  The Vit C in the multi gives me horrible heartburn and I could never find a multi without C in it, so I had to buy all the vitamins individually without the C. Much more expensive.  I'm really looking forward to my life getting back on track after the surgery and the thing I'm really looking forward to is sleeping flat next to my hubby again.  That darn wedge is a real downer. 

Best to all of you

John....My surgery is scheduled for Aug. 20. If you want to look up a site that will give you some info on the Hill Repair or Hill Posterior Gastropexy, look up:

http://www.nature.com/gimo/contents/pt1/fig_tab/gimo56_F6.html

You will have to scroll way down several pages. You will see the Nissen surgery photos and the Hill is right after that. It has a very good illustration of the Hill procedure and you can see the difference in the two procedures. It is not as anatomically disruptive (Dr. Aye's words) as the Nissen and does not seem to have the gas bloat syndrome with it. It's been around since the 60's, invented by a Dr. Hill in Seattle but it never caught the mainstream because it is more technically difficult and longer in the OR. Dr. Aye (he does both procedures) says he has more control over the tightness of GE junction using manometrics with the Hill than he does with the Nissen, so he prefers it to the Nissen but he also says both of the procedures are equally effective and recovery is about the same. I chose it because I did not want to take a chance on having gas bloat syndrome because I have IBS-C and already experience alot of gas and cramping.

There has been a huge debate on another message board between the Hill proponents and the Nissen patients. Debate is a good thing but each of us have to choose whats best for us as individuals. I'm just sorry there aren't more people who have had the Hill so it could be a more fair analysis of the two procedures.

Kelleigh on the other site (www.heartburn-help.com) says she used a product called Mederma (found in any drugstore) for her trocar incisions and they healed very fast with very little scarring. Vit E is also acceptable for good healing. What I do know is that you are suppose to let the steri-strips fall off and not take them off. On the heartburn-help site, there is a separate category for Nissen surgery so you can get alot of answers and encouragement there also.

Sounds like you are right in the ball park for healing and healing quite well. I'm happy you have joined this support group. It is a Godsend for people. Take care and happy healing also.

Post Edited (sillylilly) : 7/26/2008 6:27:08 AM (GMT-6)

Scotty, welcome to the board. You are among good company here :)
As I mentioned before, the first night I was home from my surgery I absolutely HATED myself for having the surgery. I don't know if I mentioned this in my first post, but on my day of discharge, the nurse took me off the pain med pump AN HOUR AND A HALF before my ride came to pick me up. about 45 minutes into it, I called the nurse and somone different came in and I told her I was in incredible pain. She noticed I was off of the pump and she asked me if the nurse before had given me oral medication when she took me off of the pump. I said no. The look on her face was utter horror as she asked me, "Why would she do that?" I answered, "I don't know, I'm just the patient." She said, "I'll be right back" and I swear she was back in less than 60 seconds with some liquid pain med. If I saw that first nurse today, I'd probably give her a piece of my mind - hahaha!!!
Thankfully you're not having any reflux - YAYE - that's the whole point!
My stomach is also really sore and tender. I have two cats that just LOVE to climb on me and paw me and purr - I normally love it but I have to sort of shield myself from them early in the morning when they like to do this.
As far as food goes, our appetites and likes and dislikes are going to be totally out of whack. Here's an example, I used to love clam chowder, maybe I will again. But the other day I bought some and pureed it in the blender and heated it. I let it cool down a bit and had a spoonful and I couldn't eat it - I was revolted by the smell and the flavor.
Wow, you've lost 10 lbs just since the 18th? Did you want to lose the weight? Make sure you are getting enough protein in either the form of a protein shake or liquid supplement. I don't know if you have Safeway stores but they sell a store brand of protein shake that has 20 grams of protein, is very low in fat and carbs, and chock full of vitamins and minerals. I drink one every morning even though it takes me almost an hour to drink the whole can. Also, liquid vitamins are very important.
It IS only going to get better. I keep telling myself that everyday. :)

Carolyn thanks for the link to the Hill procedure. I'm going to look at it after I finish this post. Thanks for the hint on the Maderma, I'm going to go out and buy some. All but 2 of my steri strips have now fallen off. Some of the incisions seem larger than the others which I suppose makes sense depending on what was thrust in there at the time of the surgery :)
I wonder why Dr. Louie didn't mention the Hill procedure to me. I don't doubt his judgement though. Although, I have to laugh now (ouch!) because I have to admit that he truly didn't go into detail of all of what we are experiencing post surgery. I know for a fact if he would have I would have backed out and said, "NO WAY" and would have been on Nexium and battling the reflux for the rest of my life. So, again, I will affirm to myself and others that I am glad I had the procedure. But be not mistaken, I have been so flatulent - especially yesterday and last night - unreal!!! But again, I think of the incredible pain that I had the night I couldn't pass gas and I count my blessings.

I do feel like my healing is on track overall. Tomorrow (Sunday) will be day 12 and I'm going to try to start transitioning to a soft diet. I'm going to start with a little bit of very overcooked pasta with a cream (not tomato) sauce. I'll let you all know how it goes.

Janice, how are you doing? Let us know.

This board is the BEST!!!!

Post Edited (dwntwnseaguy) : 7/26/2008 7:24:13 PM (GMT-6)

Thanks for the encouraging words SillyLilly.  Today hasn't been to bad except I sneezed twice and

I think I almost cried both times.  I'm still really sore underneath my left rib cage(especially when I sneezed) I'm assuming that's maybe where they did most of the work.  I did have a baked potato for lunch today and was able to eat most of it.  Does anyone know when you're supposed to be able to drink Coke again?  I cheated and had a little bit of a Coke and it was great!  I'm supposed to go back and see my surgeon again on the 4th so hopefully everything will be good.  I'm in the Memphis area and Dr. Guy Voeller performed my surgery and he is one of the best.  Someone even told me he had a hand in inventing this surgery so that makes me feel a little better. If anyone is in the Memphis Metro area and you are thinking of having this surgery I would highly recommend Dr. Voeller.

John...thanks for your help as well.  To answer your question about wanting to lose weight, I did want to lose but not at the rate I've been going.  10lbs in 8 days is a lot I know.  I'm trying to find some proteins shakes I like and I'm sure that will help.  I did try the Centrum Liquid vitaman and it's the most disgusting thing I've ever tried!!  I'll stick to a Protein shake.  Someone on here mentioned craving pizza, I can't wait til the day I can eat pizza!!!!!

 

Scotty,

Welcome to HealingWell. This is a great site. I look forward to getting to know you better.  I am Kitt.   I see you have met some of the wonderful members already.

Thank you for posting in the new members introduction forum.  Also thanks you for sharing your story.  Keep on sharing.

We love new members so keep posting.

Sincerely,

Kitt

 Hi there !  

 It has been a long time since I have written in but I was reading along and just thought I'd chime in with a bit of my story. I can't have the surgery because of my lousy swallowing...I had the motility test and my doc says no way....  I have been really lucky that my third medicine and hopefully my last ....Protonix, will keep working and the only time I have major trouble is when I overeat or eat the things I know I shouldn't...darn it...lol

    Did you all have the motility test before your surgery ?? My doc says some surgeons dont require it, but he does....Talk to you again soon.....Anne

Anne and Lady Jane,

This is what baffles me about the PPI's.  LadyJane, you say the Protonix worked for you for along time...that's great.  Now, please explain to me how you were refluxing enough while on the Protonix to have reflux that caused pulmonary problems to develop.  Wouldn't that mean that the Protonix was not really working but maybe you just didn't feel the refluxing. 

These issues really bother me because so many times people stay on PPI's for years, yet they still develop Barretts (like dwntwnseaguy) or in your case, the pulmonary issues.  Do you have a good answer for me.  Scratching my head over this... 

Anne...I sure hope the Protonix works for you.  I'm at that stage where I've tried 4 different PPI and they all stop working after a few months and the side effects are horrible for me so i'm going for the Hill procedure.  I don't have any motility issues so it's a hard place for you.  I wouldn't go to a doctor who didn't do the motility test.  You want every test before you have the surgery.   Actually, I've read where the Hill procedure can be done on people with motility issues so you might check with Dr. Ralph Aye at Swedish Med Center in Seattle just to see what he says about it. You can go to www.swedish.org and I think his email address is there. Otherwise, I can ask the webmaster to send you his email.  He will answer you...he's a very humble and caring doctor. 

Post Edited (sillylilly) : 7/28/2008 9:18:25 AM (GMT-6)

Hi everyone!

Good to hear from you Janice (LdyJane). I'm concerned that you are not able to even eat soft mushy foods. It's true that we all heal at different rates. Have you had your post-op checkup with your doctor yet? I'm actually calling Dr. Louie's office today to make my appointment. Please let me know what you doc says when you talk to him about this. I'm rooting for you. Can you even have ice cream or ice cream smoothies?

Scotty, sneezing hurts doesn't it? You're being brave having coke. I'm still so gassy yet that I dare not even look at anything carbonated :).

Carolyn, I studied the link you gave me on the Hill procedure and I'm fascinated by it. I am curious as to why this wasn't an option presented to me. Again, I don't question Dr. Louie - he is fantastic. In fact, now that I think about I remember Dr. Louie telling me that Dr. Aye was the one who examined all of my test results so perhaps I was considered for both.

All but one of my steri-stips are gone - it seems to be the largest one of the bunch. Most of the incision are about 1/4 on an inch wheras this one is over an inch. I bought the Maderma and have been applying it to the incisions that I can. I've still been convering them with band-aids afterwards because it just feels weird to leave them uncovered.

Yesterday I actually went OUT to lunch and we went to Thai food. We ordered thai soup and pad thai. I was able to eat the soup and little tiny bits of chicken that I chewed chewed chewed before swallowing. I was able to eat a few tablespoons of the pad thai and that was it. It took me over an hour to eat this with two trips to the restroom in between - thankfully I had a patient dining companion. It felt good though to just get out and feel somewhat normal.
I also have a confession to make. I used to love Chardonnay. I had a tiny sip of wine last night and it tasted AWFUL. It's amazing how this surgery really changes our tastes.

Although last night I did have sort of a suffocating attack. I was having a few soft noodles for dinnner (lunch leftovers) and I must have taken too big of a bite (which isn't much these days) and I started choking up and couldn't breath. Naturally I started to panic. I calmed myself down and focused on breathing and it passed within a minute or so but it sure wasn't pleasant.

I am able now to drink coffee with LOTS of creamer which sure makes me happy when I wake up in the morning :)

I hope you all have a great Monday and you are in my thoughts and prayers everyday!
John

Hi everyone!
John, I left a message on my other post about the swallowing-just a recap..it's not normal, I'm heading back to Cleveland on Thursday for endoscopy on Friday. I am down to water and water based protein drinks but even these are difficult. If it gets worse I have to go to our local ER for IV fluids.

Scotty and John, I had to sneeze yesterday too...what a new adventure in pain; I'll do anything to avoid that experience again!!!

Scotty, my back hurts too, and I'm wondering about posture, even though I try to maintain good posture, it does hurt and it feels very tired. I saw my chiropractor on Friday and I'll see her again Wednesday. She did wonders for the shoulder pain!

I'm amazed that you tried coke!! I'm not allowed any carbonated beverages, no coffee and nothing caffienated
I'm glad you're both progressing with food and I hope it continues. My instructions were soft, mushy foods for 2 months!!! Isn't it interesting how different Dr.'s have different instructions!!!

Janice

LadyJane,
I sure hope you're swallowing problem is just part of the healing process and not anything serious. Many people on the other board say that the swelling gets actually worse before it gets better. But you have to check to be sure. I'm wondering why your doc says no coffee or caffiene after surgery. Is this just temporary until you heal. Many people drink coffee the day after surgery, some while still in the hospital.
I'm curious as to your doc's reasoning.

My prayers are with you all for a strong positive healing.