Reflux, wind & sickness following total gastrectomy

[Livebewell]

I had a total Gastrectomy for junctional oesophageal/stomach cancer in October 23 at age 55. Preceeded and succeeded by rounds of chemotherapy.

Followed in April 24 with a consequential Diaphragmatic Hernia operation.

Everything following has been ‘text book good’ until I started a few months ago with bile reflux, chest wind and sickness which has increased from being intermittant, to pretty much after everything I eat (even drink sometimes).

A recent scan and barium swallow test has shown no recurrences or specific obstructions but there appears to be some spasms in my small intestine near the jejunum. I am due to talk to my consultant imminently but would be interested to know if anyone else out there has suffered similarly. It is my only real concern that I can’t eat anything comfortably and that my nutrition is inadequate and weight is dropping.

[052517]

Any chance your bowels are full? there is a nerve that sends signals to the stomach to say the bowels are full and to stop sending more food. With total gastrectomy that nerve may have been removed??

[CelloNorth]

Hi -- I'm sorry to hear about the issues you are having!

In case it's helpful I will share my history -- I had a GEJ adenocarcinoma (junction) and esophago-gastrectromy (Ivor Lewis) in July 23. In February of 2024 I started having nausea, vomiting a bit, but also some intermittent abdominal pain which I thought could be gas. It took two visits to hospital to resolve, but what I had was volvulus / intussusception (twisting, telescoping) of the bowel near the jejunum.

During my original surgery I had a feeding tube placed in the jejunum which was subsequently removed 4 ish months later (Nov 23). In Feb 24 I had symptoms of periodic nausea, a little vomiting, and intermittent abdominal pain vaguely near the jejunum that I assumed was gas --at that stage I was still trying to figure out what I could eat / tolerate. I eventually went to emergency (A&E) and they kept me over night, saw something on CT scan, but then sent me home as it had resolved on a second scan.

I was back again the next week with worse symptoms (I was out at a restaurant where I had eaten and on the way home had to vomit because the food insisted on coming back up). That resulted in a second visit to emergency where they kept me in, and the senior GI surgeon on call used some intuition (based on more CT scans and symptoms) to decide that they should do an exploratory laparotomy -- this turned up the adhesions and fistula issue. My recollection is that even with the CT scans it was subtle to detect. , and CT scans showed some twisting but it was resolving. What they found was that a fistula had grown from the feeding tube site on the jejunum to the abdominal wall (I believe) forming a kind of tether. Normally your intestines float to a degree, but you can get these twisting / telescoping issues if a focal point happens (which I understand to mean that a part gets fixed in place, leading to it contracting in on itself as part of the normal peristalsis to move food through). They found a number of adhesions in my abdomen as well that they cleared up, and I have had no trouble since. The surgery was not very long and recovery was reasonably quick (other than missing an orchestra concert I was due to play in).

My (lay) understanding is that with all of the surgical mods including pulling up the stomach etc. the intestines can shift around, so perhaps something like that is intermittently happening?

It was challenging to pin down due to the intermittent symptoms (I think it was twisting and untwisting which meant that food wouldn't pass but then it resolved and would pass).

Hope this helps and that you get resolution,

Rob

[Molly14]

Hi - for the first 3yrs after my Ivor Lewis I had continuous trapped air higher up in my new plumbing and severe nausea - I had to stick my finger down my throat (sorry no other way to explain) about 8 to 10 times a day to release the wind or I wouldn’t have been able to eat much - had a load of tests but nothing showed - I’m 9yrs on and things have settled a bit now - it takes a very long time for the new plumbing to figure itself out and settle down - all the best

[liz_crisp]

hi I had a gall bladder op 3 years after my op and the surgeon said I had adhesions which were probably the cause of my pain, wind and problems. He sorted them out and tided up a bit, but i do have a sort of pocket type ubend now which occasionally causes problems.

As Molly says it takes a long time for things to settle and changes in diet, activity, routine, can cause a blip for no apparent reason. Take care