Bile reflux after oesophagectomy in 2004

[christinehulmes]

Had oesophagectomy back in 2004 and needed 6 dilatations post op. within the 1st year then everything ok until last 11 months when everything seems to be going wrong again. Had Barium Swallow in June this year and the consultatnt says that even if the bottom half of my stomach tube has gone very narrow, food will eventually go down so they feel that at this time i don't need further surgery (but will review the situation in April). But i asked them what about my reflux (bile) and they said live with it! But now i am vomiting green bile on a regular basis and have pain under my ribs on the left side, i also have very little appetite now despite being on a nightly jejunal feed. Can get only about 5-6 teaspoonfulls of soft food down before i want to vomit it back up so i stop eating if i don't it comes back up with pain on my left side and green bile. Where do i go from here? Can anything be done for my bile reflux?

[Hidden]

Sorry to hear about your trouble, which does not sound normal for somebody who had an oesophagectomy in 2004. We are not medically qualified, so take all that follows in that spirit!

Bile is an alkali, opposite of acid, coming from the gall bladder, and it can be in a range of colours. It tastes vile. I understand that sucralfate can sometimes help protect the system against bile salts, but this might not be appropriate for your symptoms. Sometimes bile reflux can occur because of the way in which your 'plumbing' has been connected up, but it does not sound right that this has started occurring recently. It sounds almost as if something must have been developing, with perhaps your stomach altering its shape or something like that, perhaps? There must be some explanation for why bile is coming up - and this might, or might not, be an inevitable result of the detailed surgery that they had to perform.

The pylorus sphincter is the valve at the bottom of the stomach which can affect the flow of food out from your stomach, and it is often possible to stretch or alter this to improve things, depending on the details of your original surgery. But it sounds as if your stomach is creating a vomiting reaction rather than simply not letting food through?

I wonder if the pain in your side is muscular, and the result of straining when you are vomiting?

Not surprising that you have no appetite is it!

Have things changed since the barium swallow?

I think it might be worth making a time line of how things have developed recently, contacting the specialist nurse(s) at the hospital and asking for an earlier appointment. It sounds like it needs a good investigation as to exactly why these things are happening. Just because you have had an oesophagectomy does not mean that you cannot develop completely unrelated digestive problems. Sometimes a gastroenterologist can help when the surgery has been a long while ago, and this might be worth suggesting when you go.

It might also be worth a visit to your GP to talk things through.

There are some things that we have to tolerate because our digestion system is not as it was any more; but this does not sound like it is that kind of issue, and it does sound like it needs an immediate specialist investigation.

[christinehulmes in reply to Hidden]

Forgot to mention in that you asked if anything has changed since the Barium? Well just recently the answer is yes in that i have less appetite, i feel full quickly after eating and food is getting stuck again.

[christinehulmes]

Thank you for replying to my post. I am seeing GP on Wednesday morning for a chat and shall mention that i am not happy with things. The pain in my left side under the ribs is constant but made worse when i eat and move about. I agree with you in that something is not right. When i get food sticking above the narrowing, the only way it will go down is if i can hiccup but then anything trapped just comes flying up along with bile.

[VerenaSmith]

So sorry to hear of your recent problems, how awful for you. I agree with all that Alan says and as you say it seems that something is wrong. I agree too that over time our disgestive system can alter/change position, I feel that I have experienced that myself, I too suffer from bile reflux at times and the usual advice about sleeping more upright helps me. My advice to you would be to stand firm, don't be brushed aside and insist that further investigations take place. I wish you every success and I hope you get sorted soon.

[christinehulmes]

Many Thanks to both Verena and Alan. i am not the kind of person to let things go until i am satisfied and i know that it is right that i should do everything that i can while i can before too much time passes. Could it be that i am having peristalic problems with my oesophageal stump. i don't know but as i have said something is going on and is now affecting my body weight in that it is slowly being erroded.

[cherrybailey]

You have had good advice. Sounds like it needs sorting!

I occasionally get the pain there had endoscopy and nothing showing up. slight swelling in the oesophagus nothing to worry about.

Yours is totally different sounds like there must be something they can do to help you, you know your body don't let it go hope you have a good g.p.

If not could you contact the specialist, hospital let them know what is happening with you they might fast track you and see what is going on!

Good Luck!

[jay2908]

This may be a similar issue to what I had been suffering from. I too was getting bile reflux and ended up in A&E on quite a few occasions. Eventually the doctors diagnosed Pancreatitis. I am not saying this is what you have, but it might be worth getting some advice on this. If you are finding that your GP is not assisting as much as you would like, go to A&E, which is what I did.

[christinehulmes]

Thank you for answering my post. Pancreatitis had crossed my mind and i have since mentioned this to my GP. He explained that since i take Creon 40000 3 times a day with food, Pancreatitis can be a side effect but only mildly. Recently i have been having bad pain spasms under my ribs on the left side and again mentioned this to my GP. Again he explained that it sounds like Pancreatitis and that if the pain gets so bad that i want to lie down and throw up call 999 and ask for an ambulance as i would need to be admitted to hospital for pain relief and come off food alltogether.

[gutlesswonder in reply to christinehulmes]

Christine Hi

After a Cholecystectomy (removal of Gall Bladder ) I was prescribed Creon in error by a not-up-to-speed GP. It was disastrous ,particularly for my Oesophago-gastrectomy.

If you still have your Gall Bladder (and normal Pancreatic function ) are you still taking Creon and have they told you why ?

[2Chrissie4 in reply to gutlesswonder]

Yes, i still use Creon and yes i still have my gall bladder in place. I have to use creon because i have a malabsorbtion problem since my oesophagectomy and use a jejunal feeding tube for overnight feeds every night but i still have to eat what i can during the day hence the creon to help my body absorb extra nutrients from whatever food i manage to eat.

[2Chrissie4 in reply to gutlesswonder]

I was told also that a side affect of taking creon was mild pancreatitis and that if ever the pain gets intolerable to phone 999 for ambulance. I was also told that any benefits that i get from taking creon far outway the sideaffects and that i must try to eat something with protein in it at least 3 times a day.

[gutlesswonder in reply to 2Chrissie4]

I don't understand why any protein which you manage to ingest orally is not dealt with by your own normal bile secretions.

My case was different in that no longer having a gallbladder means that my bile is thin , not oxidized by storage and runs continually --the flow can be up to 1 litre per day.

Supplementing this with Creon was frankly corrosive and I had many fewer problems when I gave it up.

Worth discussing with your specialists ?

[2Chrissie4 in reply to gutlesswonder]

My body cannot ever since i was small absorb enough protein from what little i eat so i have to take creon as it more or less forces the body to absorb more protein from what little i do eat. It is only in the recent 4 years that this malabsorbtion problem has gotten much worse and i have to take the creon, multivitamins plus overnight jejunal feeds with extra nutrients otherwise i can literly starve. 4 years ago my weight dropped so much down to less than 6 stone because my body wasn't absorbing enough nutrients that i was put on TPN feeds through my veins to help gain some weight and therefore then i could have the jejunostomy feeding tube fitted that has since saved my life litterly. Back then i looked like something out of a concentration camp and i will do anything not to go back down to that weight. These days i have to be carefull that i must take my medication because quite litterly i can lose 4lbs in 2 days if i fail to take the creon or not use my overnight feeds.

[gutlesswonder in reply to 2Chrissie4]

Regarding Nausea-

On the two occasions I have been troubled by this in the 21 years since my Ivor Lewis I took Ondansetron. It is very effective at suppressing the vomiting reflex and after only 2/3 weeks I had de-sensitized and regained sufficient control to come off the drug--there is a psychosomatic (in the medical definition)

component to the condition.