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Not sure what to do - 4CM sliding HH

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Posted 3/20/2017 3:20 AM (GMT 0)
Copied and pasted my comment from the other thread..hoping to get some advice sad

I am a 23-year-old 5'6 Male ~ 130 pounds, and I got a 4cm hiatal hernia sometime in August I believe. I was getting extremely bloated a month prior and one day I looked eight months preggers, so I did some leg raises thinking it would help. I'm pretty sure the abdominal pressure I had combined with the exercise popped my stomach up and ripped the hole my diaphragm.

I've been miserable, and I have been fine since, but more miserable than fine. I have trouble breathing sometimes, and I cannot do/am scared to do intense activities like playing competitive basketball as I have for the past eight years. Running is also weird, esp when on an empty stomach, it feels like my stomach is banging against my diaphragm wall and causes me pain and hard to breathe.

I definitely can't take a full deep breath like I used to, and I have had constant nasal congestion since. Usually, happens when I am having an episode of GERD.

My doc put me on Pariet "for life," and said surgery has a 99% fail rate. I hate taking these drugs....I have never really been sick in my life, and if I was, I rarely took medicine for anything I always recovered quickly. I am healthy and had no problems at all, and now I feel like I'm an old man who can't do anything anymore.

My quality of life has drastically fallen.

I don't know what to do. I'm in Canada, and I'm not too sure how things work here. Part of me wants to explore the surgery, but am scared of the side effects (not vomiting or burping, which are essential to have).

I want my life back..I'm 23 finishing up my degree but am having the hardest time for the past year. It's not even much reflux, it comes and goes but my hernia has seemed to inhibit my ability to do anything moderately athletic. I really dont want to be on drugs forever.
Posted 3/20/2017 11:43 AM (GMT 0)
Darjman

Please seek a second opinion from another doctor. I had surgery and lost the ability to belch or vomit, and it hasn't made that much of a difference to me. I find the 99% fail rate a little suspect, but I'm not a medical professional.

Sharon
Posted 3/20/2017 2:23 PM (GMT 0)
I think the ability to burp depends on the skill of the surgeon the tightness of the wrap. The statistics your doctor told you about are the opposite of what I just received from two surgeons here in the US. I agree with SharonZ that you would get another opinion.
Posted 3/20/2017 7:39 PM (GMT 0)
Definitely get another opinion! My surgeon's success rate is in the high 90% range. That's here in Pennsylvania.

What tests did you have? Are you sure your stomach is a slider? It sounds more like the symptoms I had with my stomach stuck in my chest. Maybe your stomach sticks sometimes, not just a quick up and down. A barium swallow might show what it does. (Mine started out as a slider, became a paraesophageal after a bad accident.)

After my surgery I couldn't burp or vomit for maybe a year, but the burp came back over time. After 8 years I still can't vomit, so I just keep anti-nausea meds handy.
Posted 3/20/2017 7:50 PM (GMT 0)
@Alice

I just had a barium swallow which said something about my sphincter and 4CM sliding HH. I feel like it sticks too sad I'm worried about not being able to vomit if I get a stomach flu or such etc. It's more so for when I"m older and not as strong as I am now

@Law and SharonZ

I'm pretty sure he said that to scare me and dissuade me from even thinking about surgery.
Posted 4/3/2017 8:50 PM (GMT 0)
Went back to my Doc...

Still said that there is, unfortunately, no solution to the HH and failure rates are high.

I keep trying to pester him about it but I truly think he does not know and I don't want to present information about it. I may just go see my school doctor.
Posted 4/3/2017 11:48 PM (GMT 0)
The not being able to vomit thing is for maybe a year after a Nissen fundoplication and not forever, not now for your hernia. Stuff should be able to come up now, and that's why you are having

Your doc is wrong, or maybe it's a Canada thing, which I seriously doubt. Of course I'm no doctor, just a patient, so this is only my opinion for what it's worth. My hernia was a really big one, the kind where the stomach was stuck in my chest and didn't go down by itself at all. I'm not sure if 4 cm is all that large.

I hope you go to a different doctor. Pestering is getting you nowhere. I'm not saying you need surgery either. Maybe all you need is a different medicine. I tried several before I found one that worked - before the wreck that shoved my stomach into my chest. I would have been happy not to have had to have the surgery.

Surgery will change your life, so consider it carefully. If you can get comfortable be happy with that. But surgery is necessary for some of us, and it works for most of us.
Posted 4/4/2017 2:21 AM (GMT 0)
Hey Darjman,

Get a second opinion from a thoracic surgeon. Those are the specialist who complete the procedures in Canada. Your HH will only give you a host of other problems along the way if not corrected. Nvm dealing with the pain for the rest of your life and you're gonna have to limit your activity anyway to stop it from getting worse, so you might as well just get it done. Get a second opinion... I've been researching all of this topic for the last 7 years, and have talked to numerous specialists, thoracic surgeons, general surgeons, gastroenterologists etc. I've never heard a 99% failure rate...

C
Posted 4/7/2017 9:37 PM (GMT 0)
Thanks for the response Minou87!

I talked to my doc again and then another doc at school...both said there isn't a good surgery that stops reflux.

They want me to be more aggressive with me taking my PPI's everyday instead then come see them in 3 weeks.

I know that surgery is a last resort, which is why they're telling me this. It is sort of discouraging, as I dont want to take PPI's for my entire life...so i'm at a loss what to do.

I am schedule for an endoscopy though. Not sure what it's going to tell them that they already know...I have a HH and its a bich.

Ill update soon i guess.
Posted 4/12/2017 2:41 AM (GMT 0)
Not an update...but I feel so crappy I just need to rant.

I am so miserable.

I am sick of this stupid HH. I was fit and healthy and was active every single day this time last year. One doctor said she's sorry that I can't eat certain foods, but that's not even my concern. I want to get back to an active lifestyle and not become an out of shape, old and broken old man. Taking PPIs for the next 50 some years makes me want to cry. Sure they may provide a little bit of relief right now, but I don't care about right now.

I'm looking at the future. As I get older, I'm not going to be as healthy. I'm pretty sure the hernia is why it's hard for me to do any intense activity. It slides up I guess frequently, and it makes it difficult to take deeper breathes in, especially when I'm breathing hard. It makes me feel faint and queasy. There was a point last October that I had an even harder time breathing, and I could feel something in between in diagram which was making it extremely hard for me to take deep breaths in as I could only expand my diaphragm so much.

So because of this stupid HH, I can't keep a gym routine up since there is no way of telling when it is going to cause my problems. If I can't stay consistent, there is no point in doing it. I don't want to "take it easy," and walk on a treadmill. Mind you it is not like I do any hardcore lifting (just pushups, lat pulldowns, etc.), but I do play sports (or did) and running around a field what I want to get back to. So I have become a couch potato cause I feel like crap every time I workout.

Even with the PPI, I feel like crap. I have delayed gastric emptying now and guess where that probably came from? I took a PPI, worked out then had a protein bar. And kaboom about half n hour later I feel like ****** with lots of gas and nausea.

I'm so worried that it will be impossible for me to get back to an activity level that helps me stay as fit as I have been. Being sedentary along with PPIs wrecking havoc in my stomach for 40+ years I'm not going to have a good time in my 50's or 60s. And I don't want that at all.

My friends just asked me to play basketball at the community center, and I told them I couldn't I just ate and took a PPI, so I am out of commission.

I don't know what to do. I've done yoga; I eat better, I sleep on two pillows. I am just so pissed off and hurt, and I have gotten anxiety, and I hate it.
Posted 4/12/2017 1:16 PM (GMT 0)
You need to take one day at a time and not worry about what will happen 50 years from now. We all suggested that you get a second opinion - not pestering your current doctor, and not your school doctor. I think your anxiety is playing a big part in your symptoms. Anxiety can cause/make your symptoms seem worse. If you have problems with bloating, have you tried anti-gas medication? Staying home and feeling sorry for yourself will get you nowhere. There is nothing wrong with walking on a treadmill for the time being. I know you are scheduled for an endoscopy, but when was the last time that you had one? How were you diagnosed with GERD and delayed gastric emptying? Eating better isn't the same as following a strict GERD-friendly diet.
Posted 4/12/2017 2:27 PM (GMT 0)
Your hernia is above the 3 cm that is the bottom of the "large" hernia category, according to many doctors. If you exercise too hard you could be in danger of your stomach getting stuck in your chest - "paraesophageal." The reason you have trouble breathing is your stomach is pressing on your heart and lungs when it's up in your chest. Surgery is the only solution. A large hiatal hernia like this "is not going to get better by itself," as my surgeon told me about my large hernia when my stomach went paraesophageal.

You need to see a thoracic surgeon, as Minou87 said.
Posted 4/12/2017 8:01 PM (GMT 0)
So can I just contact one of the thoracic surgeons and express my concerns with them? Or do I need to do that through my doctor...

Sorry for the dumb question lol, I never have done anything like this.

I worry about the future because what I do now will affect my quality of life when I'm older. I never had an endo, my HH and delayed emptying was diagnosed from a barium swallow. As per the food, I don't have any triggers, it can be anything from water to pizza. Really depends on the day. Tomatoes don't cause my issues etc.

My anxiety only kicks in when I feel like crap out of nowhere or get that difficulty breathing. Otherwise I'm fine, but I do know that the anxiety can make it worse.
Posted 4/13/2017 12:37 AM (GMT 0)
Hi Darjman,

You can go through my old posts about my consults with surgeons or I can find it if you are interested. I saw four or 5 before I made a decision on what to do. I ended up going with a thoracic surgeon who pulled down my para esophageal hernia, tightened my diaghram and left it at that. I didn't get a nissen even thought it's almost always recommended. I wanted to try without it and I will say It was 1 year and a half ago and my pain and gerd have both been greatly reduced. I would do it again in a heartbeat after as much pain as I was in. That being said it could have been my pain was more because over half my stomach was in my chest and in was para-esophageal so it was basically caught. I'm not sure what the surgery would do to a traditional sliding hernia. Like the previous posters said, get lots of opinions. I didn't need a referral to any of them I just called their office and made an appointment. Best of luck to you!
Posted 4/13/2017 6:58 PM (GMT 0)
Hi!

I looked at your posts but I am in Canada so it won't work out, but thank you!

That is interesting, the part of you just getting your diaphragm tightened. I was wondering if they could do the same for me. I will go talk to a surgeon after i'm done my finals. I appreciate the input!

Michiganmom said...
Hi Darjman,

You can go through my old posts about my consults with surgeons or I can find it if you are interested. I saw four or 5 before I made a decision on what to do. I ended up going with a thoracic surgeon who pulled down my para esophageal hernia, tightened my diaghram and left it at that. I didn't get a nissen even thought it's almost always recommended. I wanted to try without it and I will say It was 1 year and a half ago and my pain and gerd have both been greatly reduced. I would do it again in a heartbeat after as much pain as I was in. That being said it could have been my pain was more because over half my stomach was in my chest and in was para-esophageal so it was basically caught. I'm not sure what the surgery would do to a traditional sliding hernia. Like the previous posters said, get lots of opinions. I didn't need a referral to any of them I just called their office and made an appointment. Best of luck to you!

Posted 5/2/2017 3:43 AM (GMT 0)
I don't know how possible this is lol...

but I was laughing very hard last night for about 2 minutes straight (tears in my eyes, begging for my frinends to stop laughing too).

After that, I got some pretty bad pain where the hernia is, and then a bit on the lower part of my chest (sort of where the hiatus is). I also got some reflux too. The pain went on for a while and did laughing really just aggravate my hernia... It is very depressing to know that laughing caused me pain sad
Posted 5/4/2017 11:43 PM (GMT 0)
Update:

Went to see my university doctor (since shes closer and very good), and told her the PPI's arent just doing it for me.

She put me on Metoclopramide, to help with delayed stomach emptying, which I have currently. It also works for GERD. So fingers crossed it works well
Posted 5/5/2017 5:45 AM (GMT 0)
Actually.. I looked up reglan and it really does not seem like something I want to take...


a question - Can taking PPI's cause Gastroparesis? Ever since I got on these things I do feel like my food just sits in my stomach and its been happening lots this week where I keep burping up the nasty taste of my food I had earlier. I reallllly dont want to take the reglan
Posted 5/5/2017 11:01 PM (GMT 0)
I tried contacting the thoracic group by myself, but they never returned my call -incredibly busy university group practice with top credentials and outcomes. I got my gastroenterologist to call for me, and that worked! It still took many months of testing and waiting to get a slot on the operating schedule, even though they knew the problem and that it wasn't going to cure itself. I always waited 2 - 3 hours in the waiting room for each appointment.

I did get the fundoplication, but I'd had a bad LES for years and years, so I was happy to have that done at the same time. The reason for the para was a bad accident, where my airbag and seat belt shoved my stomach into my chest, breaking ribs, nose, and lots more. That hurt like a heart attack and caused my stomach to leak acid into my esophagus constantly, even sitting up. Awful!

I tried Reglan years earlier for slow motion and got the known complication of facial spasms, probably because I was prescribed it 3 times a day. I noticed eyelid twitching, looked it up, and quit the Reglan. I was lucky. It only took a month or so to stop the spasms. Facial spasms from this drug can be permanent. Always look up new drugs and know what side effects to be aware of.
Posted 5/5/2017 11:43 PM (GMT 0)
Darjman, I have been following your post here. I remember reading you are in Canada & we have had many members from Canada & still do for that matter. Its my understanding that to see a specialist you must have a referral. Many Canadians here have complained that it takes so long to get a referral to see a specialist. Hopefully where you live you will not have that problem.

I am not aware of PPI's causing gastroparesis so I can't help you with that one.

Take care.
Posted 5/7/2017 1:01 AM (GMT 0)
Yes that is the case I found out! It does take time... they go through the full process before I will get refered to a specialist. I mean I am getting an endo done soon but thats still one step.

I dont think it does either now that I did research, but can mimic symptoms by having low stomach acid... i'm pretty sure my gastroparesis is due to the hernia which irritates the vagus nerve. Its not that bad though so its managable currently.

straydog said...
Darjman, I have been following your post here. I remember reading you are in Canada & we have had many members from Canada & still do for that matter. Its my understanding that to see a specialist you must have a referral. Many Canadians here have complained that it takes so long to get a referral to see a specialist. Hopefully where you live you will not have that problem.

I am not aware of PPI's causing gastroparesis so I can't help you with that one.

Take care.

Posted 5/7/2017 1:04 AM (GMT 0)
Thanks for the input on reglan! I don't plan on taking it at all I will definitely pass on it. Don't need to add any more problems lol.

Alcie said...
I tried contacting the thoracic group by myself, but they never returned my call -incredibly busy university group practice with top credentials and outcomes. I got my gastroenterologist to call for me, and that worked! It still took many months of testing and waiting to get a slot on the operating schedule, even though they knew the problem and that it wasn't going to cure itself. I always waited 2 - 3 hours in the waiting room for each appointment.

I did get the fundoplication, but I'd had a bad LES for years and years, so I was happy to have that done at the same time. The reason for the para was a bad accident, where my airbag and seat belt shoved my stomach into my chest, breaking ribs, nose, and lots more. That hurt like a heart attack and caused my stomach to leak acid into my esophagus constantly, even sitting up. Awful!

I tried Reglan years earlier for slow motion and got the known complication of facial spasms, probably because I was prescribed it 3 times a day. I noticed eyelid twitching, looked it up, and quit the Reglan. I was lucky. It only took a month or so to stop the spasms. Facial spasms from this drug can be permanent. Always look up new drugs and know what side effects to be aware of.

Posted 5/14/2017 12:16 AM (GMT 0)
I'm curious, is there any chance that surgeons would just fix the Hernia without the NF?

I ask because prior to the herniation, I rarely got heartburn. With the hernia it effects the LES, but if they return the stomach to proper spot and close the hole up, would i not be back to normal?

My reflux is on and off. I can eat a pizza and it will do nothing. The days where I can feel like stomach sliding up and sticking for a bit are the days where anything, even water, triggers reflux.

I have no swallowing issues and don't really think my LES is "weak," although I will have to go get tests done on that to confirm.

Post Edited (Darjman) : 5/13/2017 6:41:53 PM (GMT-6)

Posted 6/8/2017 10:06 PM (GMT 0)
Roughly, five more weeks until I go in for the endoscopy....

I've hit a pretty low point this past week. I've started puking for the first time since symptoms started a year ago, and right under my sternum to my left is hurting and has pressure. I was contemplating dropping out of my two classes this summer, but I'm doing too well in them to quit now. I am seriously considering not registering in classes for September though.... the pain and symptoms are unbearable and I've started councilling because it doesn't seem like I'm getting better or getting any help :/

Am also considering quitting my job as I'm pretty unreliable at this point.

Will update later
Posted 6/10/2017 4:21 PM (GMT 0)
Some good news!

I emailed a surgeon this past Thursday after feeling horrible. Told me there are many successful surgical options for correcting a hiatus hernia.

He was willing for a surgeon from his team to meet with me and discuss my options!

It was such a relief reading that email.

I will talk to my doc about it later.
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