Achalasia/Barrats

Thank you for your reply, I’m very grateful as I will terror this man who spoke to me like I was crazy. “If you feel this sick, why are you not vomiting” rediculous he said. I have posted a full explanation in reply to Neil. One more day in this place and, I’ll need psychiatric care or, bail money 😊

ahh that is strange, hopefully you won't get a stomach bug too many times! I've not thrown up in the last 15 years since having the operation so I'm quite used to it now.

I was told I wouldn't be able to. However, I'm beginning to think the HM surgery didn't work as well as it should have. I'm still having problems, along with just finding out I now have Barrett's. Food still gets stuck and comes up later, I still have trouble swallowing etc. It's almost like I never had the surgery except I am able to eat more foods and maintain a healthy weight. For that, I am thankful!

Thank you so very much, I had no doubt that this was the case but. telling a surgical registrar was a battle to say the least

Many thanks to all of you for your replies. I’ve been very dehydrated and, unwell to the point where I have been hospitalised at the nearest hospital to where I live as there were no beds available at the hospital where my surgical team are. So I’m stuck in the back of beyond and, found myself explaining to a surgical registrar as to why I am unable to actually vomit. As some of you know I’ve had this awful problem with abdominal distension and, constant nausea. The pain is horrendous at present. I think they have blown every vein in order to keep a canular in place, my feet are horrifically swollen, my ankles have disappeared completely. And, here I am explaining myself as to why I can’t vomit to a complete numpty!  He actually had me doubting myself 🤪 I regurged some mash potato yesterday and, it came up with blood, very shortly after it happened again but, just the gloupe but, with fresh blood. I was horrified as I have never experienced this since being diagnosed in 1987 and, I’m a seasoned gurger. So I’m stuck in this hell hole surrounded by chaos, complete disaster built on stilts on a vascular ward?? No beds, no answers. They can’t transfer me to the Manchester Royal Infirmary because I don’t fall within the district. I’m too poorly to self discharge although I came very close today. I’ve just been dumped in a bed and, not one Dr has a clue. I’ve left a voicemail to my surgeons secretary by way of an S.O.S but, unfortunately heard nothing back. A nurse told me that I have probably burst a small blood vessel, which makes sense but, I havnt been completely reassured as it’s never happened before. Thank you all for your reply’s, I will surely be shoving my phone up his errrrm  NOSE tomorrow morning. Hope everyone is doing as well as can be, take care x

I think that the ability to vomit may depend on what sort of 'wrap' was created in the fundoplication that accompanied the Heller's myotomy.   Some are 360 degrees, others much less than that.

Violent vomiting can cause Mallory-Weiss tears to the top of your stomach that result in vomiting blood.   I have had this myself.   It normally cures itself, but is very distressing when it happens.

?As you have your backside on a hospital bed, you might be able to ask to be seen by an experienced gastroenterologist whilst you are there?  Perhaps by asking then how you go about getting a second opinion (to which all NHS patients are entitled).

 

Hi Alan, of course. I personally have a nightmare when it comes to vomit. Horrible experience as it wont come up. Unfortunately I’m on a vascular ward and, the consultant who was vascular was rather dismissive. I saw a general surgeon Mr Salmon twice when I arrived and, he was ever so good. He came to see me today and, ordered some more blood tests and, he has been liasing with my surgeons at Manchester. Unfortunately there is not a repitible gastroenterologist here. The care is quite poor in comparison and, is the last place I want to be. Having said that Mr Salmon has been diligent and, not just kicking me to the curb, he wants to get to the bottom of what is causing the pain and, distension. Keep well and, many thanks x

Hi again, 

I feel so frustrated for you! It breaks my heart to hear what you are going through.  If I was still in Mcr I would head straight to the MRI! - just in reaction..  

All of this could be managed, if people would just listen... I am sure you have pulled all the strings you can; the system oftem appears impregnable.. But, more often than not when the penny finally drops the NHS act swiftly and with care...It is just a battle to get the basic points accross...

Whishing your path clears soon, and stay positive! I know you will! 

N.  

Can you belch? I wonder ,if so, whether the inability to relieve pressure upwards might be a factor in the distension?

Thank you so much Neil, I am literally at my wits end. It is now almost midnight here and, I am sat waiting to see whether I am being moved into yet another ward as they need vascular beds. I fully appreciate that it can’t be avoided but, I’ve been moved twice already and, I’m exhausted. Not to mention about to implode. I have no idea what ward they maybe moving me to or, when. If im moved again in the middle of the night, I will just walk and, grab a cab home. Enough is enough for me now. I’ve been waiting for medication since 8.30pm. I don’t like to rant on this forum but, if I decide to just go home I will go into battle tomorrow as I refuse to allow them to take me down again. I hope you are well and, managing. Rest assured there will be consequences from this experience in this hell hole. You take care and, many thanks for the morale, I need it.

Hi Alan, that’s a good call because I’ve never been able to belch and, I can not recall ever doing so as a youngster. I’ve always known I’m incapable of belching but, never thought that it could be related. But, I think I would have had problems with distension before but, it’s certainly a possibility to consider as my oesophagus is very,  very baggy and, not in situ.

I hope the night went ok!Do keep us informed, I am sure many are following this thread with fingers firmly crossed!

Just wish I could help... Will try and send some lucky vibes over now! 🌠🌠

N. 

Good morning Neil, I Have just been informed that I am being moved to another ward 😡 again. I have not seen the consultants  yet but, I’ve been informed by one of the nurses that it’s an orthopaedic Ward??? Unless I see the consultants and, they come up with a reasonable plan for keeping me here. I will just be going home. The nurse advised me that I would have to self discharged which I do understand is a necessary but, I told her I would not be signing anything as I havnt actually received any care. I’ve just been moved from ward to ward so she said if I just leave they have a duty to inform the police 🤣🤣🤣 I just said “ ok then, because you certainly do not have a duty of care and, I will be signing nothing. So here is to another day.

Bugger! ... I expect you have contacted your GP to try to assist within the hospital. I recall mine helped once with some success. It might be worth exhausting that option - your GP practice has a responsibility for you too. If the police do get involved, keep a dated diary of events... Hopefully the wind will change and this avenue will dissolve !! Wishing you good luck again, 

N 

Staying in a hospital bed, regardless of which ward, strengthens your 'negotiating hand'.   Once you have discharged yourself it will just be another outpatient appointment.    It is a specialist consultant you need to see;  probably the specialism of the ward itself is less important.   There may be a patient support service like PALS that might b able to help?

 

Hi Alan, absolutely but, I’m literally in hell within the system. They are attempting to liaise with my team at Manchester but, just to update you, I’ve just been informed by the nurse that the consultant who has been overlooking my care, albeit a vascular surgeon has insisted that I am not to be moved from this ward. So at least that has taken some of my anxiety away and, I know something at least. The annoying thing was is that the ward they wanted to transfer me to apparently closes at mid day tomorrow so it would have meant another ward tomorrow morning. It just became all too much. Because I’m not within the same hospital trust they are not able to just transfer me to Manchester. The only option would be for them to discharge me here and, I make my own way to Manchester and, present myself at the A&E dept and, face a 4 hour wait and, of course I’m not well enough to do that. They are coming to catheterise me and, hook me back up to the IV if they can find a vein ha ha. Almost all veins available have been exhausted. Thank you so much to everyone for the support. It helps a lot, many thanks

Hi Neil, I was informed 15 mins ago that the consultant who has been over seeing my care has insisted that I am not to be moved to another ward so, there is some respite from this disaster. They unfortunately have to catheterise me which I’ve been attempting to avoid for obvious reasons. I have asked to see a gastroenterologist at least and, he is arranging for a urologist to come and, see me. So I wait not holding my breath but, at least I can stay in situ. Many thanks for support and, well wishes. It’s appreciated and, keeps me sane. Take care of you 😊

Many prayers to you Nettie! 

Thank you Sarah, and, to you also. Take care

Looks like you have their attention now.. !

Please keep us all posted...

Deep joys for a Friday night! But at least no police drama! Had the bail money waiting though :0 

Nx 

Hi Neil, 🤣🤣🤣 many thanks for the bail money 💰 Well by 11.30pm last night I firmly put my size 3s down and, I insisted that they do something or, I was walking and, taking myself to Manchester A&E. They eventually did a bedside bladder scan and, it became all hands on deck. The scanner measured there was 1,200ml of fluid high up in my bladder 😱 I now know where that extra 7lbs had come from. I’m catheterised now until at least Monday. The puzzle is that my samples are not showing any significant infection, just a little protein but, the blood results have not come back yet. The consultant was very kind this morning and, said it was the last thing I needed with everything else going on. Despite being drained so to speak I am still distended and, they are arranging to refer me to a urologist at Manchester by way of outpatient and, they are going to show me how to self catheter which is both confusing if not a little frightening. I just assumed that it would be a UTI and, they would start me on a course of antibiotics. The consultant said that at this moment I am undiagnosed and, only the urologist will be able to find out exactly what is going on. It’s all too much. My sister is bringing in my Ensure Plus shakes in for me as and, this will give you a giggle 🤭 They presented me with a crusty pannini with roast beef, super for an Achalasia/Barrats sufferer with no motility in the oesophagus. If I didn’t laugh I would be crying. So I’ve had a good chat or, rather laid down the law in so far as my needs in so far as diet. Again many thanks it’s so appreciated to talk to people that understand my language as I may as well be speaking in tongues in this place. On the positive side I’m more comfortable and, it’s a day at a time I guess. But, they certainly woke The the wrong Wookiee up last night ha ha. Take care to you and, everybody. All your thoughts are a pleasure. Jan 😊

I wonder if you have a motility issue virtually all the way through your digestive tract, and whether the nerve system affecting the muscles that drive the motility are working properly?   A bit like extended gastroparesis? I have no idea how they would test for this (other than noting the volume in the bedpan and bottle), and this is completely unqualified speculation.

Hi again

Well progress is progress I guess...Maybe that penny is close to dropping! 

I am not at all surprised re the sandwich -  whatever next... Reminded me of everytime I have an endoscopy check, I tell them it will never be clear of food. They simply dont believe  me despite being the experts! Total madness!  So they are in shock everytime they do it! You are right - if we didnt laugh!  

On we go!!! 

N. 

Good morning Alan, the very same thing has crossed my mind as well. It seems that my system is just going to sleep but by bit. I was diagnosed with fybromialgia 8 years ago. I did receive treatment for it but, gradually as the doses of certain drugs ie Gabapentin, Pre Gabelin which are used for pain control as well as epilepsy reach their maximum dose they do nothing or, very little. The weaning the medication down I found quite unpleasant. I have been medication free for the Fybro for probably 4 years as I found it interrupted my concentration and. I feel better for it. I’m normally a very active person and, I pace myself when I feel I’m pushing my luck. The Fybro seemed to come all at once and, for a number of months my legs were so week I could not lift one leg over the other but, with perseverance that got easier. My GP to this day still has a little concern that there is a possibility that I actually may have remitting recurring MS. I did have an MRI 7 years ago and, all was fine but, my own GP has discussed a lumbar puncture to check properly as in some cases (maybe early stage) does not always appear by way of MRI. I havnt discussed this with anybody else as I don’t feel that either diagnosis would change the quality of my life in any event. Having said that it appears that my issues are all muscles and, nerve problems. There is at the present no sign of infection but, I am awaiting blood results. It appears my bladder has just gone into complete retention. So at the moment obviously I know where I’m up to as far as the Achalasia but, I have no understanding of why my bowel and, now my bladder have decided to go to sleep ??? I’m still in hospital and, despite the general surgeon knowing very little as to what is causing these problems he has been very understanding and, has made efforts to get me to the right people. He has arranged a referral by way of outpatient to a urologist at Manchester and, is still trying to contact my Achalasia team also. So I’m undiagnosed at the moment but, I wonder if my nerves are giving up and, that’s an underlying issue. Anyway, it’s just a week at a time and, who knows when I will receive an appointment but, Mr Salmon here has told me that it will be Monday at the earliest when they try to see if I can pass water on my own, if not they will go through self catheratisation with me. I’m just going to have to suck it up because getting anxious and, stressed does not make happy Achalasia. I hope you are well and, many thanks. Take care

Good morning, I know exactly what you mean the only people that are anywhere’s near experts are those of us that have to live with and, manage it. We all have our little quirks in the way we manage that passage of food and, drink. And, as you say on we go ha ha. I will be in here until Tues at the earliest but, obviously I am at least feeling more comfortable without carrying around all that extra fluid but, the distension is still there but, I’m hoping that this set back is the cause of that and, hopefully it will just go away. I live in hope 🤣 Enjoy what is left of your weekend, take care 😊

Good morning... I sense your spirits are high, so thats a nice feeling.., Along with some unplanned sunshine today it seems!☀️... Keep those positive vibes up, and maybe take adavantage of your lay-up.. Start writting that Novel! You do pen words nicely!  

Catch u all later,

N (spending rest of day unblocking my drains-deep joys! 

Hi, yes it looks like it has been a beautiful day, far better to be outside enjoying it though 😊 It seems every time I turn around they are bringing the food again 🤭 so over facing. I have felt a little more positive today as there is no point in worrying. I’m just trying to go with the flow although some sleep would be absolutely wonderful or, just some quiet time. If I could extend any advice to anybody out there who lives anywhere near it would be under NO circumstances allow them to admit you at The Royal Oldham ha ha. Hope you managed to clear out your pipes successfully and, enjoy the rest of what looks like a lovely evening. Take care 😊