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Rolling hiatus hernia and gastric volvulus

Posted , 14 users are following.

Taura
Taura

First of all, thanks to others for sharing your experiences on this forum, now it's my turn!

I've been having problems eating a normal size meal for about 18 months now (gastric pain / reflux/vomiting after eating). I first went to my GP after about 3 months and was given Omeprazole first, then Lansoprazole, neither of which worked. I had an ultrasound to check for gallstones (negative) and about a year ago went on the waiting list for an endoscopy. After about 4 months of waiting my GP managed to get me bumped up the waiting list as \"urgent\" because the medication wasn't working. (At the time we were going on the guess that it might be an ulcer). I eventually had an endoscopy in late January (without sedation, just throat spray - bad decision, it was really miserable and I retched solidly for about 20 minutes during the procedure), and they decided that I had an intrathoracic pylorus (basically my stomach was all twisted and partly in my chest cavity) so sent me for a barium swallow a few weeks later which showed a large hiatus hernia.

Fast forward to July when I eventually had an appointment with the consultant endoscopist to tell me all this officially, and refer me on to the surgical team. After the hernia diagnosis my GP had put me onto Metoclopramide but it hasn't honestly made much of a difference.

I saw the surgeon in mid August and they described the condition as gastric volvulus with hiatus hernia and that they will do a laparoscopic fundoplication with an anterior wrap (hopefully has fewer side-effects than a full wrap) and put me on the urgent list as the symptoms aren't managed by drugs.

So I had a phone call last Thursday evening saying that they'd had a cancellation and would I like to come in for my operation on Tuesday (tomorrow!) so after a quick (15 mins) pre-op assessment on Friday, I'm now in the final stages of waiting for the big day. I have a bit of a cold unfortunately so there is the chance that tomorrow they'll decide I'm not fit. Hopefully not, as I've spent the last 4 days doing a massive handover of all my projects to my colleagues - it would be a bit of a let down to walk back into the office on Wednesday saying \"I'm back!\" but ultimately it's about what's safe and best for my recovery.

I'm rather apprehensive about the general anaesthetic (never had one before), the post-op pain/discomfort and the whole \"soft diet\" challenge coming up over the coming weeks, but if it puts an end (eventually) to the misery of not being able to eat a normal meal without cramping and vomiting, it'll be worth it in the end.

Wish me luck!

3 likes, 37 replies

37 Replies

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  • leezie
    leezie

    Posted

    Oh my goodness Taura!! I cant believe your thread! Its as though i have written it myself.

    Since April/May 2011 i have had exactly the same symptoms that resulted in exactly the same stages of medical intervention. SAme tablets that continue to do nothing. Initially going through my GP for tablets, more tablets and then a ultrasound scan which found nothing just a fibroid. Ulcer mentioned; Kidney stones; stress producing IBS (which i never believed as it wasnt happening all day, only when i had a meal) etc etc

    To move things on quickly i decided to start using Private Medical cover and during my endoscopy the consultant said "nothing found (no ulceration, pollips, tumours) but oddly you have a twisted stomach - possibly from birth". Speaking to me 2 hrs later from the bedside, he was rv ushed and said the same again but added "so .. i hope it will start to sort itself out now". I thought this odd news as firstly how does this happen and when? then I said how can it improve when you havent done anything?? just the endoscopy and did he realise the INCREDIBLE pain i go through every day when eating with now vomiting taking place straight after the meal?? He said it could just have happened now, but a condition not picked up from birth.

    TWO weeks later i had heard nothing more (despite of course using Private Medical care for this now to speed up the process!). I phoned the hosp asking for a full report and a follow up appt. That was last thursday 10th May ... Today SUNDAY 13th the consultant rings me whilst im out shopping. He said he will transfer my details to yet another colleague same place, who knows about this procedure (i havent got much faith in this hospital now however) as its possible to 'anchor' the stomach. WIth the terminology of stomach VOLVULUS finally being given to me today i have been able to read something about it (all worrying infact!).

    the symptoms are EXACTLY what ive experienced for a year!! However I am very concerned reading how this has to be acted upon very quickly as a medical emergency in most cases and here i am hanging around waiting for this consultant to call me for past 2 weeks and then now waiting for his colleague to get in touch.

    It says, reading the journals/reports on line (bear in mind its sunday so i can speak to any specialists today) that a form of strangulation can occur (i guess a bit like a tight rubber band on a finger) which can cause the area to close down and stop functioning hence emergency.

    Is this what they have told you? Incidentially i was so interested to see yours is hernia based and before my endoscopy i said to the consultant that i almost feel a protrusion below my rib cage as though a hernia popping out!! He didnt spot that through endoscopy as apparently something like that wouldnt be seen in this way ..... so ....

    how are you now? have the symptoms reduced? In the USA similar procedures have resulted in IBS or Chrones - did you have anything like that mentioned to you or any symptoms like that now?

    It sounds like the procedure in your case was pretty straightforward?

    Id love to hear more from you about how things are - but what a breakthrough hearing this from you today! Good ol' internet! and thank god we now DONT just take docs word as God ... we can research stuff ourselves and get a clearer picture. I would have gone along with "stress from your job; IBS; stones" etc if i hadnt pushed for more answers!!

    Many thanks. Take care.

  • leezie
    leezie

    Posted

    ** meant i CANT speak to a consultant today as its SUnday!
  • Taura
    Taura

    Posted

    Hi Leezie

    Good to hear that you've got a diagnosis now - the hard part is over!

    For me, the clincher in the diagnosis was a barium swallow - seeing the stomach moving around when in action (swallowing the barium) was awesome. An x-ray is of course seeing the problem from the outside, rather than the endoscopy which is just seeing things from the inside, so doesn't have the same perspective of seeing where things are in respect to the rest of the body.

    I started off standing up with a real-time x-ray showing what was going on, as I swallowed the barium it looked mostly normal (I think, by observing the radiologist's reaction, anyway), and then they tilt the table so that I moved from vertical to horizontal whilst still being x-rayed; then the turned me over and jiggled me around so that the barium coated all my stomach insides and then when they had a look they saw that my stomach had moved into my chest cavity above my diaphragm. Diagnosis made!

    So part of my condition they identified with the endoscopy (gastric volvulus) and the other part with the barium swallow (hiatus hernia).

    Good old NHS - it then took another 5 months or so to see the endoscopist for the formal "diagnosis" meeting and then another 4 weeks to see the surgeon (then only 3 weeks until the operation).

    I guess some gastric volvulus conditions are an emergency, but probably many aren't.

    As far as I can tell, the operation was unusual enough to make it interesting enough for the (very senior) surgeon to want to keep it for himself and his registrar to do (rather than hand it off as a routine job to a colleague), however they didn't seem terribly worried about the urgency from a clinical point of view - I got put on the "urgent" list because my symptoms weren't controlled by drugs, rather than because of risk of strangulation I think.

    9 months after the operation I occasionally get twinges of discomfort when eating - stodgy foods, mainly, but it's not something that causes me any worry or upset and as far as I'm concerned, I feel "cured". I was glad that they only did a partial fundoplication (wrapping a bit of the stomach around on itself around the top entrance to the stomach) as this apparently reduces problems of not being able to vomit or burp post-op (both of which I can do rolleyes). There is always (apparently) a risk of it all coming undone at some point in the future, but I guess I'll cross that bridge if it happens.

    From my experience of the medical profession (partner is a consultant in the NHS so I get his perspective a lot on this!) - they wouldn't leave you with a condition that they felt was likely to be an obvious emergency - professional ethics and medical negligence suits would both make this a bad idea - so my gut (haha) feeling is that the risk of your volvulus being imminently strangulated is low, but that they care enough to follow up with you (remember that in the private clinic the surgeon may be in on a Sunday for "normal" work if he's fitting it around government work during the week). If you feel that things get suddenly worse then call NHS direct/24 (assuming you're in the UK) or go to A&E.

    Good luck and hope that they sort things out for you.

  • leezie
    leezie

    Posted

    Thank you SO much Taura for that info. Its so interesting for me to read. It puts my mind at ease somewhat to sleep this evening at least!

    I am disappointed that i had to chase the hospital 2 wks after my endoscopy as the symptoms of course increase dramatically as time goes by, as you are aware. Its got to the stage when i get worried, whilst trying to keep calm, when about to eat a meal as the pain is overwhelming and the sickness isnt the best party trick ive ever had!!

    I think due to its rarity (as you mentioned so clearly with your own surgeon), that this current consultant i had hasnt realised the significance of this condtion - after all why would he tell me it should now start to get better?? Makes no sense at all without having any procedures done!

    Just so many interesting things you have mentioned ... and i will copy your info and keep it with me. I think i may also check more closely reviews for specialists in this field now too as initially i was just sent locally to a private hosp near to my home by my NHS GP. I've got full respect for NHS care - but like you have indicated its the waiting time thats so awful and this is a debilitating condition - esp as we all need to eat.

    How wonderful that you can still vomit and burp ... now that really is a good party trick!

    :[

    Im so thrilled for you that you feel so much better. Yes the risks may still be there with it 'coming undone' but i guess every op has a risk attached. Hmmmm - i wonder if they will give me a tummy tuck at the same time?!

    I'll pester you again if i have some more queries if you dont mind. Cant tell you how delighted i am that you have been suffering exactly the same things as me .... if you know what i mean!!

    Take care, L

  • Taura
    Taura

    Posted

    Yes of course Leezi - happy to answer if I can.

    But don't fall into the trap of Internet Answers - really your doctor knows what's going on and what is the best action to take. Ask questions like "Is there a risk of strangulation", "What happens if I do nothing", "is there any surgery that I need to make it better" and don't accept "it'll get better by itself" unless they can show you some report/evidence/medical process (they have guidelines for everything...) that demonstrates that this is the approved course of action for your condition. If you just wave "someone on the internet had something similar" at them, it won't work of course :D

    Given that you have private insurance, you may be able to ask your current consultant if he can refer you on to someone with specialism in your particular condition. I was referred to my surgeon (NHS Lothian) by the endoscopist, once I'd had the diagnosis, so he was referring me to a surgeon he knew had a specialism in my condition. In your case, it may be that you've ended up with a private surgeon who's not an expert in gastric volvulus. Google him and his colleagues and see smile (Just for info, the surgeon who did my work also does private work, and on his private work page his specialist interests are: Oesophago-gastric disorders, Laparoscopic surgery, Hernia surgery. See what your chap's are).

    I guess the delay in coming back to you after the investigation just proves that you can't rush admin - NHS or private things take time to work through the records process.

    Rest easy, sleep well and reduce stress. I'm sure my hernia wasn't caused by stress, but my worries about eating definitely made my life more tense and that contracts muscles and exacerbates the problem. Easy for me to say now...

    Until you get some final solution, do what I didn't, and eat small portions, try to avoid spicy / acid food and keep sitting upright after eating for a good while, to give your stomach the best chance of digesting.

  • leezie
    leezie

    Posted

    thank you so much. All info greatly received and appreciated. Take care of yourself ... and i'll add any new news to this forum for others to read in future.

    Onwards and ... downwards ... as in the case of digestion! L x

  • Ian_H18
    Ian_H18 Taura

    Posted

    HiTaura, Just read you info about your medical condition. I have similar problems but no sickness, however at night cannot lay down as eveything feels as if it is coming back up and also my breathing deteriates to a point where I sit up and doze off if I can. It is loanley at night so I now keep the light on low beside the bed. Previously I had t have a MRI scan and had a panic attack, then a problem at my job where I had a further attack in less than a month, most of my problems seam to have escalated from there. I also have a c6_c7 osteo bridge in my spine to be sorted or operated on so some of my problems may be stress related, however at 58 years of age its all a bit worrying. My doctor is prescribing lansoprazole 30 mg, paid for my MRI and happy to do anything to help so we are on a steady road to success. I shall update when I have more news. Regards Ian
  • martin78990
    martin78990 Taura

    Posted

    Hi Taura

    Just read your post,I've been having same problems and have jus been told that 95% of my stomach is in my chest cavity , a bit of a shock and wondering how it got there.Not sure when you had your op,I'm having one soon. Are you ok now and able to eat properly

    • peter1201
      peter1201 martin78990

      Posted

      Hi martin just read about your condition, and I have been through my own misery....my condition was a meso axial volvunus, whereby my stomach had entered my chest cavity. I have kept a log of both my pre-op agonies (I lost over 3 stone in weight, and suffered acute vomitting as my condition worsened). I had to survive on an awful diet when I couldn't eat, milk shakes, jelly, ice cream, sucking chocolate bars.

      From the problem becoming unbearable to my op took almost 2 years, and yes I thought I was going to die, as did my family, I was like a Belsen victim. I had all the usual, cameras in every orifice, drugs prescribed etc and then a barium swallow. Only when the surgeon reviewed the barium swallow did I know how bad the condition was, and he promised me an op the next month. After the op he told me it was a miracle I could eat anything at all due to the twist. My stomach was relocated down from my chest cavity. 

      I followed the post op food menu religiously, and I can now report that I can eat every food I ate before. I was told that hot spicy food, steaks, and bread may have to come off the menu. There is nothing I can't eat and I count myself lucky. This is a really debilitating condition, and I really hope that your hospital moves quicker than mine. The surgeon has done a most brilliant job, in fact he had students in to watch and he even offered me the DVD!!! I really wasn't interested.

      If you would like to read my diary notes pre-op, and post-op I am prepared to post them here. I sincerley believe in being open about my medical condition as it may be beneficial to others....either pre-op or post-op. You will come through all this, but if in any way you can push for quicker action I would. I blame myself for the 2 year wait as I allowed an air of resignation to fall over me.

    • Taura
      Taura martin78990

      Posted

      Hi Martin

      It's a bit of a shock to find your stomach is going walkabout isn't it? I was quite fascinated. My problem was fixed in 2011 and nearly 4y later I can report that I have no issues. It probably took a year to feel completely normal, but was 90% ok after 3 months. Since 2011 I've had other challenges on my digestive system (baby in 2014 caused gall stones and removal of gall bladder last year) and I get some problems with reflux because of that, but no lingering effects of the hernia I think. Good luck with your op and recovery.

    • mary040367
      mary040367 peter1201

      Posted

      Wow it is so nice to find all these things have an ending in a good light I have been suffering for a year and a half with all these symptoms it's gotten so pain full to even swallow and food I can't eat at all anymore even fluid is bad and Iit has cfelt like someone is inside pushing up in my chest is how much pressure is in my chest now I have times where I wished I was dead over this been through all the tests and had them tell me hernia was small besides all the pain I have had I seriously have wanted to grab them by the throat and ask them to swallow and see how long they would like just that not all my other symptoms I think they make people suffer and I am at my wits end with all this suffering been on every drug for it from omeperazole to photonic to nortryptiline to more I'm treated as I'm exaggerating but it has gotten so bad that I can't eat or drink anything with out feelings of strange sensations going up in my esaphagus to my head but my hernia must be large now since I eat and vomit now too or even drink and vomit. But I finally after a year and a half am scheduled to see a surgeon thank God I have parlayed so much threw this. And seriously as sick as I have been wished I wasn't here some days and my family is surely tired as well I'm not taking any answer but surgery to help I have never wanted to eat and not be in so much pain in back shoulders chest and I thought for awhile I would die before they found out what was wrong finding this has made me feel so much better I have read all these posts I thank God for the internet and being able to read these or I would of probably never made it this far. I have read more things and thought so many things was wrong I thought it was cancer and they were not finding it after I had so many tests. Mr i ct scans endoscopy colonoscopy barium swallows motility studies etc.. but finally hearing these stories the surgeon has to help me I pray and hope. Thanks for all your stories and God bless you all.. 😅😅😀😀😀😀
    • martin78990
      martin78990 Taura

      Posted

      Thanks for that,and I hope your feeling OK now,did you ever find out or has anyone else,how there stomach got into their chest cavity
    • Taura
      Taura martin78990

      Posted

      A weakness in the diaphragm wall where the oesophagus goes through it becomes a hole and the stomach kind of wiggles its way through. Mine was intermittent - it was in the right place when I was standing up at the beginning of the barium xray, and in my chest cavity after they had got me to lie down and jiggle me around. Very strange!
    • peter1201
      peter1201 mary040367

      Posted

      Hi Mary, sorry I have taken so long to respond but I was away in Newcastle, and am now playing catch up with mail etc. Your symptons sound almost identical to mine. Ican remember so many times the gradual tghtening of my chest, back and shoulders. It usually happened after I had eaten my evening dinner (in some cases I managed only 1 forkful, other days by miracle I could eat a full meal, but those occasions were few and far between. It became almost a ritual for me each evening around 6pm to excuse myself from my family as the pain became more severe. I would lie in bed as that pain took hold, it was almost unbearable, then anytime between 30-60 minutes of going to bed the vomitting would start. This would entail 2-3 sessions of rushing to the loo at intervals of 10-15 minutes. The relief at the end of the session was amazing, the pain totally disappeared. I would then go downstairs and eat a couple of yoghurts to cool my throat. I have to admit that sometimes the pain was so bad I would put fingers down my throat to hasten vomitting, because the reward was no more pain. I mentioned the stuff I lived on (milk shakes,choc bars, fortesips, jelly, ice cream) a really sh*t diet but it was often the only way I could get calories in me. I did find after sicking up that after the yoghurts I would wait an hour or so and I would make myself crackers and cheese. This so surprised me because eating a sandwich was almost impossible as was bread. I spoke with a fellow sufferer who also told me he found the same thing, that some time after being ill he could take crackers and cheese. I wonder if because they are so dry it makes you chew more than you would normally. What you have to find is what you can actually take. Another surprise for me was that on Saturday or Sunday I often managed a full english breakfast. You do begin to recognise when you are flogging a dead horse, and that some Saturdays I would not even try to do a fry up. I love a cuppa but found I could drink it  only at breakfast time, and I also had porridge. If I attempted a cuppa at work it always lead to being sick. I found milk shakes the solution (I hate them now and would never drink another one). I think you have to experiment and find what works for you. If I could eat (you know the few occasions you can) I would eat even spicy foods. I never held with advice to stay off spicy food, or things like tomatoes. My problem was that besides having a large hernia it had also twisted my stomach over. The path of food to your stomach has to defy gravity!!!! The surgeon told me that he had realigned my stomach away from my chest cavity and that the space had filled with blood and this will normally drain away. He did warn me that he may have to cut me for the op (under the armpit). I told him I didn't care what he did as long as the pain went and I could eat again. To his credit he did it all through 4 keyholes and a single drain point, none of which are visible now. Just for the record my condition was called "meso-axial chronic gastric volvulus". I would make also one point on recovery. I was prescribed a drug called tramadol as a pain reliever. It was a living hell, made me feel sick and caused halluncinations. I stopped taking it without permission after a couple of days and immediately felt great. When I visted the registrar for a de-brief I told him what I had done and said tramadol was waay too strong, and an aspirin would have done. He told me that they always prescribe the max pain reliever because then they are covered for people who cannot take pain. I did chuckle as I thought to myself about 2 years of excrutiating pain, and any minor discomfort after an op was a cakewalk!!! I do sympathise with you Mary and anybody else who has suffered this, and I hope you get swift resolution so you can claim your life back...best wishes Pete
    • mary040367
      mary040367 peter1201

      Posted

      Thank you Peter I get to go see a surgeon tommorow Mornington hope I have gotten the last test needs which was the mobile try as long as it says what he needs about my sohincters I can finally have the surgery I am praying for good news. I have been sonthankfulnto read all the stories of others on this site and am glad to here it's going great for you now too. I also figure after surgery pain can't touch the he'll I have been threw and the pain for over this last year an aspirin will probably be all I need too. I have become very high tolerant to pain with all the pain I have been having. I will post praying for some positive news to be able to get this done and be able to eat something soon. ☺
    • mary040367
      mary040367

      Posted

      motility test not mobile
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