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Nine months out of LapNissen

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GERD & Acid Reflux
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Posted 4/17/2014 1:47 AM (GMT 0)
...and I'm still having trouble. I was doing great for a while, but have regressed. Most issues seem to be with my stomach. I usually read about folks having issues a few weeks out, but not this long.

My buddy Bill here has said it can take a year. I'm just frustrated. I know everyone heals differently. Stress is present. My dad passed around four months after my surgery from pancreatic cancer.

I'm having some stool samples tested soon. I fear I have Chron's, dumping, etc. Seems like I was better off before surgery. I had a medium hiatal hernia, esophigitus, GERD, and have Barrett's.

I suppose I just need some encouraging words. Unfair of me to bother Bill all the time. :)
Posted 4/17/2014 2:21 AM (GMT 0)
I can't offer advice as I haven't been "wrapped" yet. I can offer you encouragement and prayers. It certainly looks as though you had plenty of reasons why you needed to have the surgery. Maybe it is as you said you just need more time. Good luck.
Posted 4/17/2014 2:22 AM (GMT 0)
It's just nice to know you care. :)
Posted 4/17/2014 2:51 PM (GMT 0)
I've also had a fair bit of nausea the last 1-2 weeks. Zofran is ineffective.

I'm wondering if my wrap is ok. I'm told if it comes undone, I'd know it. The pain would be so bad, I likely would be unable to walk and vomiting would be uncontrollable. It was tight early on. I didn't eat for several months. I was able to eat whatever later on. Could it have slipped or something else?

I feel very, very bad now. I could be feverish.

Please chime in.
Posted 4/17/2014 3:49 PM (GMT 0)
smooth,

Sorry to hear things aren't going well for you. For what it's worth, I've been having a lot of problems lately and lost my father 2 yrs ago this June to  pancreatic cancer. cry    Wishing you strength and comfort!  :-)

Posted 4/17/2014 4:47 PM (GMT 0)
DOGG,

I'm here for you if you want to talk about your problems. I may even be able to help.

I just started taking medicine for IBS, so I hope that helps with my stomach pain/discomfort. I won't see GI doctor #1 until June.

You start to wonder if you're going to have good days and bad days with this no matter far out you are from surgery.

It saddens me to hear about your dad. That cancer is monstrous. Mine lived about 15 months after diagnosis. I wish you the same strength and comfort. Let me know if you ever need to vent or anything at all.
Posted 4/18/2014 10:33 PM (GMT 0)
I'm sorry about your father. All this stress probably has that acid churning away in your stomach. I do think the surgery was important, especially since acid caused the Barretts - at least that is under control.

I've dealt with diarrhea on and off since my NF 7 months ago. It is about 45 minutes after eating. I'm not sure what it is from. It would stop for a couple weeks, then come back, again. It stopped last week, as I had another health problem that required hydrocodone. Now, I'm the opposite, ugh.

My acid reflux didn't cause me to feel heartburn. It caused considerable nausea and sharp pain in my stomach - just on an empty stomach. Food - like crackers, helped.

The doctor is not worried as long as it is just a few times a day. I have not lost weight, so obviously absorbing calories.

DGL helps calm my stomach. Have you tried it? It might be worth it.
Posted 4/19/2014 3:23 AM (GMT 0)
I too am sorry to hear about your father. That is a nasty diagnosis and tough to deal with. Hugs to you. I am only 7 weeks post op today so cannot answer you either. I seem to be having difficulty with my stomach but I'm early on still. Curious if I can ask why you didn't eat for 2 months? I am still on fluids until the end of April although I've dabbled in a food bites here and there. My surgeon suggested he may have to reverse mine. Absolutely no way do I agree. Have you had issues all along? I know I've read a fair amount of people quite a ways out from surgery and still suffering nausea on and off. Hopefully they get answers for you soon.

Debra
Posted 4/20/2014 4:43 AM (GMT 0)
Smooth-

Hang in there my friend. Praying you have light at the end of the tunnel very soon!

Take care,
Bill
Posted 4/20/2014 1:08 PM (GMT 0)
Laurie,

I guess that's the big reason we went through with the surgery... re: Barrett's. I suppose it would be fair to say not having my dad around is always bothering me somehow, albeit subconsciously at times.

Have you noticed a particular food that triggers your diarrhea? I think I had it a good bit early on. Then one night I HAD to pick up my dog who's around 25 lbs. She couldn't get back up the steps after we walked. I dropped to my knees to pick her up because I wasn't about to do it the traditional way considering my situation w/ the wrap and all even though it was months after surgery. I bring this up because I went to the bathroom LITERALLY ten times that night. I had to pump myself up big time to pick her up.

You also mentioned hydrocodone for another health concern. Personally, when something I would consider 'new' comes along, I can't tell if it really is something new or something related to the surgery. My surgeon said I shouldn't/wouldn't have issues from the surgery this far out. Since I'm a problem patient, they're probably just trying to get rid of me.

I think the nausea makes me feel the worst. I remember when I first started talking to Bill... I had a couple of retching fits when on the phone with him. So often I've wanted to throw up, but I'm just afraid to. I belch ok, which is nice, because some can't.

Over the past couple of days, about half of what I've eaten has given me heartburn. I gave up soda and candy for Lent, which I was hoping to be able to try again today. I may at least try some Skittles I've had for six weeks or so. hehe. On Friday, I had a peanut butter and jelly sandwich which gave me heartburn for hours. That night I snacked on some peanuts and then had some scrambled eggs and an English muffin which worked fine. Yesterday, I had some raisin bran w/ 2% milk that caused the heartburn again. A few hours later I gave a piece of white pizza a try which I think set ok surprisingly. That evening I pretty much had some Triscuit crackers with some of that canned cheese which also seemed to do ok. I think I had a dose of Pepto on Friday which I'm hoping is what caused my stool to be pretty dark yesterday. I had some stool samples reviewed on Friday to detect for blood in which there was none. Before I was getting all this heartburn, it was my stomach that was suffering. The two don't seem to be aggravated simultaneously at any point.

GI Doctor #2, whom I saw on Friday, doubts the wrap has slipped or come undone or anything, but I don't know how he can be so sure. I suppose he knows more than me. My issue with doctors is this: I have a ton of questions, and that leaves them little time to have a lot to say. I imagine they're pissed at me because of something that happened. I needed a new script for nausea since Zofran doesn't do much. I found it odd he didn't write a script for the nausea medicine we talked about, but he did for this VSL 3 supplement (expensive). I went back into the office (I had made it downstairs via elevator) and the lady at the desk said it had been electronically entered. So I get to the pharmacy and it hadn't been called in. I called the office and get transferred to the nurse's voicemail. I hang up and call back because I don't need to talk to the nurse. The woman on the other end explains again she's with patients, yadda yadda, so I just left my name and number, explained the situation again, the woman still doesn't get it, so I just hung up on her. lol

I remember GI Doctor #1 telling me that he wanted to know if my diarrhea persisted, but this was a few months ago. I've not tried the DGL. Doctor #2 wants me to try that VSL 3 and papaya enzymes, both of which are very expensive. My meds were cheaper and I think I had less problems pre-surgery to be quite frank.

I was sorry to hear your wrap has failed. Do you know what you're going to do from here? What led you to believe it failed? Did it still stay in tact, but just wasn't doing what it should? :(

John

Post Edited (1039smooth) : 4/20/2014 7:11:02 AM (GMT-6)

Posted 4/20/2014 1:35 PM (GMT 0)
Debra,

Thanks and hugs. I miss him and expected to have him at least until the summertime. He passed a couple of days before my mom's birthday. I remember hoping he'd make it through my birthday in October, which he did, but three weeks later, he was gone. It was sudden in a way and not so sudden in another.

Well, my surgery was in early August of last year. So much has gone on, it's hard to remember everything. My wrap might have been a touch tight at first. I considered dilation, but I'm glad we didn't go that route. I had an Upper GI which showed a little reflux, which I'm told is normal, and it was only when I would lay on one side, but I can't remember which side. The radiologist had me swallow some big pill I couldn't get down. My first GI doctor was pleased there was some resistance to that big pill going down. If there was none, essentially it meant the wrap didn't work. The dumbass doctor in the ER a few months prior (I feared blood clots in my legs) gave me big Percocet to try to swallow. It eventually went down. It seemed like I was eating finally in early November. When my dad passed a few weeks later, I felt a physical regression. I was afraid to try to eat anything that week. When I got back home (funeral was 4 hours away where I grew up), I tried eating some things, and I was doing better with it. Not long after that, I was back to drinking and eating whatever, just like old times. I thought I had finally rounded the corner and was on the way to being whole again. At times, I would overeat. Part of it was boredom and part of it was, "HEY, I CAN EAT AGAIN. HOW EXCITING!" Overeating caused me to feel a little bad, but it wasn't anything alarming really. Then within the last couple of months, I tried to eat a grapefruit. Keep in mind I ate two grapefruit prior to this with no issue. That caused my stomach to burn like fire, which is a feeling I had never felt prior to the surgery, even with all those issues. The burning stopped overnight, but it was still aggravated/painful when I woke up the day after. GI Doctor #1 was nice enough to fit me into his schedule I think that day. I went in for some medical records for help with my taxes and mentioned it to his nurses. He felt my stomach and didn't see anything wrong. He asked if I was drinking soda, and I told him when I was, it was like grape or fruit punch. He seemed ok with that because there's this type of acid in Coca-Cola and Pepsi that is just no good for you. I can't remember the name of it, but it's not in grape soda, etc. My surgeon led me to believe I'd have no more dietary restrictions a while prior to all this, but I guess she was wrong.

I talked to GI Doctor #1's nurse last week and she thinks the wrap must be doing its job since I haven't felt much going on higher up. Ironically, almost as soon as I said it, my throat got sore and then the heartburn started, so I just don't know. I certainly haven't been very physical the last 8 to 9 months or however long it's been. I don't know if I can wait until August for another endoscopy. I don't suffer all the time, but I certainly anticipate the worst. If it doesn't kill me, I'll probably want to be dead. GI Doctor #2 refuted that statement. He's seen worse things heal, but I could be another few years out before I really feel better. A few years!? :(

If you read this and my prior post, you'll see what my doctors get to deal with. I have too much to say.

Your doctor wants to 'reverse' yours? What does that mean? He/she wants to undo the wrap and return the contents of your body to as they were? I was under the impression that couldn't be done. I don't think it's wrong to disagree with doctors at all. I was telling Joan this I think. Yeah, they know what they're doing and have expertise, but until you've lived it, you're still kind of in the dark.

My issues haven't been all along, but they have been for a good portion of it. Nausea seems to come, disappear for a while, and then come back. I've got this pain in my right side almost parallel to my navel that comes and goes. I can usually ignore it. Sometimes I feel some pressure in the wrap area. I don't remember my stomach bothering me much until lately. My strength has been an issue. GI Doctor #1 was happy I lost weight and he didn't care how I did it, which I didn't agree with. I feel most of it's muscle. Early on when I went back to work (I missed a month instead of the slated one week), I struggled getting my cooler into the building, opening heavier doors, etc. Yeah, I've lost six inches around my waist, but it really doesn't look like it to me, but then again, I'm pretty critical/tough on myself.

I don't suffer all the time. It's funny in a way. If I mentally acknowledge that I'm feeling good on any given day, then I start to feel bad. The mind is a funny, funny thing.

Thanks for listening and I hope you didn't have to spend an hour of your day reading this. I guess it helps me to talk about it. I can't even put on a tough act for my mom these days.

Thanks,
John
Posted 4/20/2014 1:39 PM (GMT 0)
Bill,

You're my inspiration in a way. I feel my issues can't even touch yours and you're here and doing well. I know it's not the best thing to inspire others for, but I care about you and how you're doing. I read something you said to someone else about how you're pretty much living your life again. I imagine anything that's wrong with me can be fixed. I just wonder if anyone that can fix me just cares enough to do it since I'm one of those pain in the ass patients. I e-mailed you back. Thanks as always for responding and it's nice someone out there cares about me.

John
Posted 4/20/2014 2:00 PM (GMT 0)
Wendy,

I also failed to mention a few weekends ago, I had a really bad episode. At this point, it's tough to even describe, but the pain just involved my whole torso. I was in hell for about eight hours, but didn't go to the ER. I felt better when I finally went to sleep and woke up.

John
Posted 4/20/2014 6:10 PM (GMT 0)
John, thanks for coming in to my earlier post. I have been working with mental health and my general health for decades. There is not a doubt in my mind that the two are significantly intertwined. More than half the bodies neurotransmitters are produced by the gut. I know it's not my place not am I a doctor but I want to strongly encourage you to consider exploring your mental health and consider as you said those good days. Bipolar treatment for me had lead to a number of illness I suffered coming under control. A good psychiatrist knows that you cannot separate neurochemical issues from general health issues. Especially the gut! Even the ancient Greek philosphers recognized the gut as the seat of our "heart-soul". I hope you will strongly consider my experience and take it to heart to check out. Having my neurotransmitters and hormones in balance are now my number one health concern as I have learned the hard way the consequences for my whole person when not treated first.
My prayers sir, Craig
Posted 4/20/2014 6:18 PM (GMT 0)
Craig,

You're welcome. I try and help where I can.

Can you tell me where might be a good place to start? I was recently placed on an anti-depressant which I have yet to take. My mind certainly plays tricks. When I mentally acknowledge I'm feeling better physically with these ailments, the ailments return. It's bizarre.

I just wonder who could really help. I've been deemed 'chemically imbalanced' in the past.

My dad passing, my dog passing, losing my hair in my early 20s, this surgery, and so forth are enough to get anyone down.

Like I said, I should have known better before doing this. I really had a lot of faith in my medical care prior and anticipated no problems especially after being told I'd miss a week of work pre-surgery.

I don't really foresee the mental aspect of things getting better for me. I really don't. Yes, I'm a pessimist, but I'm also a realist.

Thanks,
John
Posted 4/20/2014 8:06 PM (GMT 0)
What antidepressant John? You sound like you might be struggling getting balance. I find no shame in sharing my experience if it will help others reach out and get a helping hand. Using will power on brain chemicals is like using will power on diarrhea, lol. Einstein said the same mind that created a problem cannot solve it. I have a psychiatrist who evaluates my medicine and monitors it through lab tests to keep it in the right range. She is not a counselor. She like other Psychiatrists are medical doctors who work with mental health issues related to mind and body chemistry and general health as it affects those chemicals.
Posted 4/20/2014 8:20 PM (GMT 0)
I haven't taken anything for years. Um, this one is called Citalopram HBR 20MG. It says the common name is Celexa. I hope that's not the case, because I've taken Celexa before and a few others prior to that.

Medicine evaluation and monitoring through tests sounds expensive.
Posted 4/21/2014 4:55 AM (GMT 0)
Hi John,

I have to agree with Craig. I think his thoughts and ideas are very valid and could help you. I know when my mind is not up to par, neither is my body. I suffered depression 20 years ago for a few years. It was more situational. Once I made up my mind that living my life the way it was going was heading me down a road of suffering and loneliness. It was very tough but I broke my day down into hours. Eventually it was getting through each day etc. I have never suffered from depression again. Many require meds. It's a chemical imbalance, like Craig said, you cannot will to correct itself. Reach out for help until you find that person who can help you. The meds take 6-12 weeks to start really making a difference. They don't work overnight. There are other means to help yourself as well including Thought Stopping, Imagery, Counseling, etc. the body relies heavily on the mind. I know all these suggestions feel like climbing a mountain. I remember that feeling after all these years still. But no one can do any healing for you. You have to want it enough to take steps for you. You deserve it. We are all here for you but we can't take our sufpggestions and do them for you. Maybe set a small attainable goal and work with that alone at first. Gives you a positive focus. You can feel better physically and mentally. The mind can do so much to a body. Give yourself a break and no judging yourself. Just accept you and your body and it's recovery for today. Deal with tomorrow tomorrow.

Debra
Posted 4/21/2014 5:15 PM (GMT 0)
I'm definitely a mental wreck.

I have a barium swallow upcoming, but am not sure when.

Short of breath today. No chest pain.
Posted 4/22/2014 5:21 AM (GMT 0)
John-

Just wanted to see how things are after our talk earlier tonight. I hadn't been on in a couple days and see others have some of the same ideas we talked about.

Praying you can find the balance you need in your life right now.

Take care,
Bill
Posted 4/22/2014 8:53 AM (GMT 0)
Stomach issues could just be in response to your changed eating habbits. I've been plagued with stomach issues (not from wrap just in general) and things I've found to help are ginger and aloe vera juice. I've heard good things about cabbage juice and DGL also but never tried them.

Things like grapefruit are very acidic so not surprising it irritated your stomach. Stay away from acidic foods for a while and let your stomach settle. If you've ever followed an anti reflux diet then the same sort of foods should be eaten for an irritated stomach

Post Edited (Andy1986) : 4/22/2014 2:56:43 AM (GMT-6)

Posted 4/22/2014 9:41 AM (GMT 0)
Bill,

I had a little to eat after we spoke. As with most everything right now, it gave me heartburn, but not for long. Like I've read with a few others here, I don't enjoy eating. My mom had to make me. Haha. I did feel a little weak before bed. Arms felt strange... flu-like.

I didn't sleep well. My internal clock was crazy. In my mind In have to be up by 6 to call the hospital since my barium swallow is scheduled at 8. They're not in my network hence the call.

I've been to the bathroom twice. Diarrhea the second time, but hey, the color was more satisfactory after green day yesterday. I'd almost bet the proverbial farm this one is related to nerves from fearing the worst. My stomach is very audible this morning.

I accidentally drank some water, so I guess the swallow won't happen anyway.

Thanks,
John
Posted 4/22/2014 9:52 AM (GMT 0)
Andy,

Do you mix the aloe juice with anything? It's pretty gnarly by itself. I think I still have some here. How do you use ginger? I haven't heard much about the other two.

Saddens me to hear of your stomach issues. Do you get along okay overall? I'm guessing it could be better since I saw you post recently.

I've eaten my last grapefruit for a while. It's still weird I ate two in prior weeks before with no noticeable problems. I could have sworn my surgeon said I was on no more restrictions, but I could be wrong. I have been avoiding things I would have pre-surgery.

I think back pre-surgery and don't recall feeling that bad. My GI doctor says he would still do everything the same, but with one difference. He would have prepared me better. At this time, I'm definitely worse off. I don't remember feeling much heartburn or much reflux, but it was apparently working silent to a degree. Once in a while, I would have a REALLY bad night waking up with reflux with the kind of fire nothing could extinguish.

I'm just lost right now and I certainly don't have the right attitude.

Thanks,
John
Posted 4/22/2014 10:05 AM (GMT 0)
Wendy,

Sorry I didn't reply to your post.

You're right about that mountain feeling. I called my GP yesterday practically in tears. I asked if he could call me back. He somehow makes me feel better. Perhaps he could give me a place to start in tackling the mental aspect of things.

I've probably struggled with depression for 18 years or so. I suffer from hypochondria. It bugs me that I should have known I couldn't mentally handle surgery. I had good reasons for doing it, but timing wasn't ideal. Selfishly, I didn't want to face what my dad was going through. Not until after the surgery and joining here did I realize how long healing could take. My mom's friend saw the surgery on TV and feels it's probably good I did it... just bad timing. I imagine my mom enlightened her to my ailments.

Today will be tough. I didn't sleep well. Normally, this doesn't disrupt sleep. That's a good thing, right?

Thanks,
John
Posted 4/22/2014 10:18 PM (GMT 0)
Barium swallow is tomorrow. It should have been today, but there were some insurance issues.

I've been through so much the last couple of weeks, I'm not even sure what prompted GI #1 to order the swallow in the first place. Anyways, in the past couple of days I feel full even though my stomach is basically empty. I don't want to eat. Hydrating has been a problem today. I've had diarrhea all day today as well. The last few times I went, it's pretty much just a 'wet fart' and nothing is coming out really. Sorry to be so blunt.

GI #1 should see the swallow by Thursday or Friday when he's back in the office.

***Can anyone tell me the worst-case scenario I'm looking at?*** Dumping, Chron's, worse? ...it's like I want them to find what's causing all this discomfort, but I'm hoping it's not too bad.

Any chance of living a normal life?
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