Hello everyone - happy new year to you all. We are really struggling with what seems to be bilious vomiting after every meal . Nielsen is now a year after surgery and back to work and this is the thing that seems to be really holding him back and just seems so unfair after everything he has been through. He manages a fairly good variety and quantity of food but almost everything Now comes back up - it goes down fine but then starts coming back up but mixed with large quantities of what we assume to be bile also associated with discomfort in his stomach. He is on maximum dose of Domperidone, has had Botox injections to the pyloric valve which actually made things worse and his surgeon has mentioned both pyloroplasty and vagotomy as options although neither he nor Nielsen is keen on it as there is no guarantee of success and once done irreversible. Meal times have become a bit of a nightmare - bad enough at home but when at work really difficult . I wondered if-any of you had experienced anything similar and if so have you been able to deal with it ?
Another gremlin in the mix is that Nielsen has had a mouth ulcer for the past eight weeks which although smaller has not completely gone and we have appt and presumably a biopsy on Tuesday to exclude cancer - his last blood tests showed him to be anaemic and vitamin deficient and I am fairly sure that is the cause for the ulcer - cant contemplate the other option - but yet again more worry to cope with.
Very best wishes to you all
Lyn xx
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Lynleahy
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Firstly, you must talk to your surgeon as I have a suggestion that may help and its to stop reflux and hence possibly vomitting. I have been trying for some time to find out if this will work for people who have had all their stomach and most of their oesophagus out. I have had a merendino interposition where they used a 5cm length of jejunum between my remaining oesophagus and remaining stomach. Note I have some stomach.
The idea of using jejunum goes back to the 1950's to stop reflux. i.e. it stops anything coming up. It has more recently been used for the treatment of T1 cancer that has not progressed further. Jejunum as far as I can find out is soft, usually closed and has a natural action being part of the small bowel that pushes food down, like a spiral.
It seems logical to me that jejunum could be used somewhere high in the digestive tract to stop reflux and vomitting. If anything jejunum works too well as I have never got anywhere near vomitting except once and I could not vomit.
Now this is a very fundamental suggestion and my suggestion may be a load of hogwash but might be worth asking the question. This also assumes that the person is able to undergo further surgery.
I do not think that any surgeon would contemplate 're-doing' the operation in this way.
I quite agree that it would be best to discuss this with the medical team at the hospital. There is obviously something that is triggering the vomiting and it sounds like it might still be something to do with the original problem of food passing through, and staying past the pyloric sphincter? There might also be an issue of the body getting used to this sort of thing happening, and perhaps a need to try something different to train the body out of the reaction?
Is it all food that causes the problem? Or can he get away with some types of food, or small quantities of food passing through OK?
It would not be surprising that he was not absorbing nutrition, and I agree that this might indeed cause things like mouth ulcers etc, but they do need to be investigated. Having the test for minerals and vitamins was a good idea.
He will have had a lot of acid/bile in and around his mouth and this will not have helped the ulcers to heal. It is probably an obvious thing, but concentrating on mouth and oral hygiene would be important.
I wonder whether there is some kind of infection that needs sorting out with antibiotics? Perhaps it is worth changing the medication? And perhaps thinking about a gastroenterologist?
I think that the vagus nerve system does have an effect all through the digestive system, but cutting it to solve the problem does sound a bit like a nuclear option because one may not know what further effects it might have. If the surgeon was discussing a pyloroplasty, that would entail widening the pylorus sphincter so that food goes through more easily. I think it must all depend on the exact point in the system where the vomiting reaction starts, assuming that it is the same each time.
It must feel that you are in a dark tunnel at the moment, but do persist with the medical team. There will be solution!
It is 2 years since I had my op, & up until the summer of 2012 I was still suffering from vomiting after eating. The answer to my problem was that I had a stretch first in the summer of 2011, then another a few months later, but then last summer the problem occured again. Last August my surgeon decided to give me a balloon stretch, which up to now has been very successful, & I am very pleased to say that the vomiting after meals has stopped.
I also suffered with ulcers in the mouth which took an absolute age to clear but they did go eventually.
All the best for Nielson & I hope he gets it all sorted out soon.
I also suffer with vomiting after meals when I tried returning to work and normal life!!!! I discovered I needed to eat much smaller portions, maybe just graze all day on small amounts and if I did eat a larger portion than a small starter to stay sitting for a while!!
I also cut down what I drank with meals but now probably don't drink enough.
There has been a lot of good information left already, and I will add justa few quick things:
Usually bile is released mostly in response to fatty foods, so in addition to smaller meals it may help to make sure that the types of food are suitable. Something such as Greek yogurt is a great source of protein that is esy to swallow, but may not be tolerated that well due to dumping or anatomic changes. Seeing a dietician (if not done already) may be an option to get a good sample diet that may cause less problems.
Exertion after eating can also trigger GI contractions, and a period of strict rest after eating (in a semi-upright or upright position) may help.
I too tend to have mouth ulcers after regurgitation into the oral cavity, and there is a topical product called Kenalog in Orabase (in the US - prescription only) that helps heal and protect these ulcerations. It is a topical steroid placed directly on the ulcer. Important to make sure no thrush in the mouth before using steroids, though.
With regards to the mouth ulcers I have found bonjela and also diluted corcydle helped greatly. Also try avoiding foods such as chillies and raw onions as they can cause the mouth ulcers. I have found that whenever I have a mouth ulcer I typically have more reflux which may indicate digestive irritation. I use Antepsin and ranitadine to help in allowing my gut to heal.
Smaller meals as pointed out earlier will help and avoiding drinking with meals. I also suffered from anticipatory nausea and found amitriptalene resolved some of the pain and nausea symptoms. I hope that you find a solution soon.
Thank you all so much for your responses - certainly food for thought - pardon the pun !! Lots to think about and we will be looking at what we can try which may help.
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