Vomiting after a total gastrectomy

Hi Nnnnn, my husband has similar problems. He also had a total gastrectomy in October 2021. He has difficulties eating since then but worse over the last few months and struggling to keep his weight. Sometimes a spoonful of food causes spasms and pain and then he has to vomit, only phlegm comes up. It can take an hour until he feels comfortable to try eating again. He has tried metoclopramide but has not made much difference. He was investigated with scans and endoscopy and no reason found. We have found anything  more flavoursome or had any pepper in it would upset him. He is much better with bland home cooked food mainly thick soups and eating very slowly. He can’t tolerate cold food or drinks either and I warm water and keep it in a flask, make warm custard and leave yogurts out to reach room temperature. At the same time it is strange how he can tolerate other foods eg pop corn! We concluded that it must be related to the surgery. It is all trial and error but makes them very wary of food when at the same they need to put on/maintain their weight. I wish your mother all the best.

Thanks for your reply Mystic and for talking about your husbands experiences. It’s so horrid to see, but thank you for your advice. I think we’re gonna try metaclopromide 30 mins before eating at least until 21st when she has an appointment with the surgeon. If he says anything helpful I’ll be sure to let you know x

Hi Mystic

just wanted to tell you that my mums surgeon thinks it’s dysmotility and she will see a neurophysiotherapist for it in case it is helpful for your husband maybe he can do the same x

Hello Nnnnn, this is very interesting, please keep me updated about what this involves and what the outcome is. Kind regards x

Hi there 

Sorry to jump on to this post so late but hoping you can help , my mum has all the symptoms you have described in your posts. She had a TG in May this year, had folfox chemo in Aug, she has retching and vomiting everyday recently, lost 10kg in just 2 months. Does this ever settle and did you find an outcome as to why this is happening. I hope your loved ones are doing well. Any help and guidance would be appreciated. 

Hi Betty

I am so so sorry to hear it is happening to your mum as well, I know exactly how distressing it is. I hope I can say something which is helpful. This is long and I’m sure not all of it will be helpful but this is everything I know (and sorry if it’s a bit incoherent I’m just trying to get this to you ASAP as I know I was desperate for quick answers when I was posting so you might be too) 

My mum still has retching and foam/ phlegm. They found out by endoscopy she had a kink in her intestine and an oesophageal structure. They are currently trying balloon dilations of that area; she’s had a few and has another scheduled next week.

They started off trying her on prokinetics (metoclopramide and erythromycin eventually) it didn’t help for my mum but maybe it will for yours (she discontinued them).

They think that the kink was the issue for the foam etc. I recommend fortisip for your mum if she needs extra nutrition. They also suggested a stent but we will likely decline this for risks etc. The kink issue for us was partially solved with an NJ tube but that has pros and cons. When my mum had her NJ everything was much better but she had it out eventually. 

This is probably now not going to be super relevant for your mum but in our case:

For the vomiting- they found a piece of bowel had twisted in on itself causing everything to get blocked and then go backwards (bile and food content) which needed emergency surgery. We believe this is mostly because my mum replaced her NJ tube with a PEJ tube (surgically placed) when she had the surgery they removed the PEJ which has now stopped the bilious vomit. This may have been due to an adhesion. They found that out with a CT.

It worth noting that she’d been vomiting for 9 months and had LOADS of CT scans before it finally was visualised on the final CT before surgery. So one scan was not sufficient and it only showed up later.

Can I ask if her vomiting is bile or food?

My mums was bile so if your mum is vomiting food alone hopefully she doesn’t have this bowel obstruction (but it’s definitely worth getting the CT). They believe it was due to an adhesion around the PEJ that caused a bowel obstruction but they only found that when they did surgery. They did MRIs which are meant to be sensitive and did not see anything- it was only when she was fully obstructed they saw anything by CT. Also adhesions are caused by surgery and a total gastrectomy can definitely cause this even if your mum doesn’t have a PEJ.

for food issues it’s important to find out where the issues are, is it in the oesophagus or the small bowel. Doctors can do imaging studies to find out (transit studies show how long it takes for the dye to travel through her system) barium swallows and others. This will help treatment.

tests to maybe suggest: transit tests for motility 

CT for obstruction/ loop syndromes 

MRI for adhesions

Endoscopy for strictures and kinks 

my mum had all of these and it gave a picture of what’s going on but she has multiple/ multi factorial issues, but one thing I realised it took lots of imaging even the same type of imaging to get a diagnosis. I am hoping with your mum it may be more simple for them to fix it. Feel free to get it touch with any questions. 

Hi Nnnn

Thank you so much for replying and taking the time to write back to me, especially with all you’re going through yourself. Honestly, means a lot I thought I’d be waiting a while for a response. I’m so sorry your mum has had to deal with all of this too. It’s horrible watching them suffer and feeling so helpless. 

My mum has been having constant retching, watery bile, phlegm mostly and sometimes a bit of food coming back up. She’s tried loads of anti-sickness meds and she’s on ondansetron at the moment, but it doesn’t help much. They’ve told her she can take metoclopramide with it, so we’re trying that too. Peppermint or ginger tea helps on some days, and sometimes a bit of Manuka honey settles her a little. Not sure if you have tried any of those but thought I’d mention them just in case you haven’t. 

She had her op in May and had a dredge feeding tube, but it came out in the night and when the hospital tried to put it back in, they couldn’t because they weren’t using any imaging. So she ended up having chemo without the tube, she only managed two rounds before it completely knocked her for six.

We were told in early September that she was “cancer free,” but a week later she started getting pain where the tube had been. Over the next six weeks she had blood tests and appointments and kept being told everything looked fine, even though her retching got worse, she lost loads of weight and became so weak. Then 2 weeks ago during a hospital stay, a doctor told us the cancer was back and she was being referred to palliative care — we were absolutely devastated. A different radiologist has since said it might also be an infection, so she’s had a biopsy and now we’re stuck in the awful two-week wait. The only bit of hope is that the mass looks smaller than before.

Your message honestly opened my eyes. I can’t believe how many scans it taken before something showed up for your mum, and everything you said about strictures, kinks, adhesions and motility issues makes so much more sense than anything we’ve been told. I’m definitely going to ask her team about the tests you mentioned.

Thank you as well for mentioning prokinetics and Fortisip. My mum has tried a few different nutritional drinks too — Ensure Compact milk & juice, Aymes protein powder, and Nutrinovo ProSource Plus - these ones are smaller amounts so they’re a lot easier for her to manage. Not sure if your mum has tried any of them, but worth mentioning to her nutritionist.

You’ve honestly helped me more than you know. It’s given me a bit of hope and a clearer idea of what to push for. I’d really like to stay in touch if you’re happy with that — it helps so much talking to someone who really understands what this is like.

Thanks again
Francesca 

Hi Francesca

I am really sorry you're going through this and especially sorry that your mum is experiencing this. I feel like everyone wishes they can split the burden of symptoms, even if we never really can, as just seeing them go through it is awful enough. My mum had all her FLOT upfront before the surgery and I have heard that post-surgery chemo is the hardest so it must have been so difficult for her post-op and with a limited intake of food.

Of course I would be totally happy to help/chat any time, I know what you mean about doctors saying it is all fine when it is clearly not and I never felt like they actually saw how scary it was and getting them to take things seriously was an uphill battle. We found that pushing for a referral to see a gastroenterologist (especially one who has experience with past cancer patients) was really helpful, as the surgical team (while they are great surgeons) didn't have as much expertise in this unfortunately, and we found that her gastroenterologist would sometimes interpret tests/ scans a bit differently. It was super helpful having them at least talk to each other - and it should be standard practice in my opinion. It definitely was not simple getting a diagnosis on this and we were lucky to get several second opinions and we were constantly asking whether it is XYZ or if they would do a procedure/ repeat test, which often the answer was no. Unfortunately, it seems this is quite common, but I hope it is a positive in a way that things can still be done even if it takes a lot of pushing. 

I am glad that they've given your mum the metoclopramide -  I hope she finds that it helps her. One problem we had with it is my mum couldn't keep it down but sometimes she would be able to have it down the PEJ she had at the time (although the PEJ that was actually the cause of the problem in our opinion). Having the PEJ was helping her keep down pain relief though, if that was something your mum struggles with. I understand that your mum doesn't have a feeding tube now - due to our experience we would never go for a PEJ again (but some people love theirs) but the NJ was great at the time for managing feeding, and helped bypass the stricture somewhat, but I just suppose its a somewhat short term solution. They're obviously not for everyone, and my mum has reached a point now where she'd rather have a little bit of phlegm every day than the tube (as she's reached a point where she's not losing too much weight), but worth keeping in mind in case the doctors are thinking of putting one back in. 

Also, just in view to keep her fed and hydrated, my mum had TPN for about 2 weeks. It was a last resort type thing, you need a PICC/PORT and it has to be done in the hospital so my mum really didn't want it but it was good for a short term stability thing so maybe its worth keeping in mind. 

I am not a doctor so I don't want to say anything out of turn, but if there is bile I think it is worth checking that the bile flow isn't obstructed by anything (afferent/efferent loop syndrome or any blockage anywhere really).

I am so so sorry that the doctors are concerned about recurrence, it is the most terrifying thing to hear, especially so soon after her operation and given that the treatment is so difficult. I'm sending love and hope that the biopsy comes back quickly and with good results xx

You mentioned that a different radiologist said it could be an infection? This is a small theory of mine but I think these GI issues predispose infections as the bile prevents normal bacteria from colonising and some harmful ones like C.diff actually thrive in that environment, and if they suspect that, it should be a simple fix with antibiotics. 

I am glad that your mum is managing some of the nutritional drinks, they help so much and thanks for the suggestion on the things which help your mum, it is always so useful to know what works for other people and that's why I like these forums a lot. I hope that the doctors get back to you quickly and that your mum is able to have some relief xx