Total Gastrectomy - Excess Bile Pain Issues and solutions

dave2013

I would like to share my experience and see if anyone has advice regarding, post stomach cancer Total Gastrectomy w/ Roux-In-Y reconnection, excess bile acid/salts release into the duodenum (gut).

I have been living with the somewhat random triggering of excess bile and the acid burning pain, now for almost 12 years ago. And I'm still looking for a reliable solution to relieving the bile acid burning pain when it inevitably occurs.

Over the years I have identified some of the triggers that affect me: drinking to much carbonated liquid or even water, to much coffee or chocolate (these I can have in limited amounts without problems), to much fatty food at once (fat triggers the bile release), for me even anxiety seems to trigger bile release and can occur at any time.

Some solutions that I have found that help relieve the pain are:

1. very small amounts of ginger ale helps alleviate the pain, but there is a fine line between enough and to much. The ginger must do something to relax the gut, because ginger candy was also something that was recommended during chemo treatment.
2. deep breathing (seems to work well for mild pain relieve)
3. if it is a large amount of bile in the gut and very serious pain then sometimes the only effective solution for me is to vomit the bile out of your gut.
4. I've also tried (on and off) sucralfate and a bile sequestration powder, GI recommended as a possible preventative solution, but these don’t help immediate pain relief when bile is triggered, only a possible preventative measure.

If anyone is having similar problems and has found other reliable solutions to neutralize the bile in the gut when this occurs, please help with this ongoing and what will be for me a lifelong continuing issue.

stevenkopacz

Hey! Great tips and def use the deep breath which is actually proven by science to help! I still consistently have bile episode where my body feels like he needs to throw up and the only thing that comes up is bile. I'm eight years out from my surgery, but I've tried to tell a different things and one of the biggest things was cutting out anything acidic, which was really difficult. I did find that cutting out red sauce, citrus, and really anything like that helped minimize the acid feeling.

I'm sure you've tried all the proton pump inhibitors and other things to help with the acid, but I know for us it doesn't technically work so it's more of a placebo at least that's what my doctors have told me.

I found that sometimes sipping on a little bit of water helps but really it's so day-to-day and so different for each person!

dave2013

The funny thing about the nutrition and gastric reflux issues, it seems that there are no doctors that have any knowledge about how to help their patients who are without a stomach.

When this long journey started, I was only helped by a support group on nutrition. Since I lost so much weight they suggested high fat, high calorie shakes. That helped stop my weight loss, which has now been stable for a long time. But, no GIs or GPs, have been able to significantly help with the reflex and the possible side affect.

Thanks for responding, maybe someone also has found some effective remedies.

stevenkopacz

I fear it maybe something we just have to live with and keep under control by what we eat and drink unfortunately.