Everything fine post Oesophagectomy in 2004 but recently having swallowing problems again with reflux. A Roux-En-Y op. was mentioned.

[christinehulmes]

Had the Oesophagectomy done back in 2004 for Achalasia. Then i remained generally problem free. It is only in the last 11 months that my old swallowing and reflux problems are recurring. I have had to have 2 dilatations in recent months. The surgeon mentioned my having a Roux-En-Y operation in the near future if the problems carry on. Had Barium Swallow in june which shoed a narrowing which eventually allowed the barium and bread through but the narrowing remained. Now the surgeon has backtracked on the operation and i find it upsetting. Why????

[Hidden]

I do not know much about achalasia, other than it has to do with the way your digestion deals with swallowing food and motility (ie the process of the system carrying the food progressively down the digestive system. If you have been reasonably all right until just short of a year ago, I guess that the surgeons are trying to work through the best options, and these decisions are not cut and dried things. It is the prospect of another serious operation, and it is quite right that the surgeons do not want to rush into things.

We always think of questions after the consulting room door has closed, or we are back at home, and I think that it might be a good idea to write down all the questions you have about what might be proposed. Then make sure you have somebody with you at your next appointment so that you can have the best possible discussion with your surgeon.

[christinehulmes in reply to Hidden]

Thank you for replying to my post so promptly. I am due to see the surgeon again on April 2nd for a review and hope that i can come out of the appointment posatively. You are quite right in that it is easier to remember questions after leaving the clinic or when you get home and for this next consult i shall be prepared. At the moment i am eating just a very small portion of mushy food twice a day and am concerned that my weight will go down again. (A few years ago it went as low as 6stone) Luckily for me i have a jejunal feeding tube in my small bowel and use it every night so that i can get what nutrients i need. But as i eat less so i have to up the feeding rate most nights and to be frank it goes right through me. I simply cannot go on as i have been doing for much longer. It was one of the surgeon's team who twice mentioned the Roux-En-Y operation in previous clinic visits and for him to go back on his word now is almost intolerable. Between now and next April he wants me to visit a councellor to help me accept that things may not get any better and also visit a dietician for a new diet sheet of food. Until i try everything else how am i supposed to accept that things will not get any better????? Has anyone else do you know experienced anything like this before?

[Hidden]

At this stage, everybody's situation is so different from everyone else's that you cannot really draw much in the way of conclusions.

I think it might be an option that you might want to consider of going back to the basics of eating after an oesophectomy ie little and often. Stay off food or other stuff (eg milk, bread?) that you know gives you a problem. Do not worry about your weight, as long as you are getting a reasonable amount of nutrition.

It is an excellent idea to have a session with a specialist dietician.

Keep a regular food diary, if you do not do so already.

I also think seeing a counsellor is a good idea. If it works well, it should help most of us to get our thoughts straight about some fairly complex and emotional issues. Most people would have a significant level of anxiety about being at a cross roads and either not getting better, or alternatively going back for a big operation and all that this would entail. Having said that, there are a fair number of people who eat mushy food several times a day, keep up their nutrition levels and a reasonable weight, and remain in that situation indefinitely. They are not bouncing with joy about it, but they have come to terms with it. It is a good thing to try and experiment to vary the food, but trial and error does have a cost at times.

What do the surgeons actually recommend for you? At the end of the day I personally tend to go along with what they recommend, and if they say they want you to do various things I would be inclined to do so.

[christinehulmes]

The surgeons want me to try councelling and a different soft diet until i next see them in clinic on April 2nd. Then and only then if my weight has dropped significantly, my symptoms have worsened will they consider me for the Roux-En-Y as a last ditch resort. At the moment the are swayed by the multiple infictions that i am getting in my jej stoma. These infections have happened before at another jejunal site. Let me explain. I had another jejunal feeding tube further up in the jejunal but i had the jejunal feeding tube with a balloon on the end. This ballooned tube started leaking bile and was exchanged for a larger size tube which also leaked. This changing to larger sizes carried on until i maxed out on the tube sizes of 22F. Still the leaks went on and i mean major leaks. This is when i was referred to see my present surgeon 2 years ago for help. Was admitted for operation to remove the feeding tube. Afterwards the surgeons told me that they had to open my abdomen up to seal the leaks from the inside outwards so to speak as the balloon size on the feeding tube was 95% blocking my bowel. That is why whenever i ate or drank anything it splurged out of the stoma and leaked all over my clothes. The jej feeding tube (the tube has a disc to hold it in place internally)i have now is near the groin and been in place almost 2 years with little trouble until recently when i had a large granuloma just under the skin with a very small amount poking through where it oozzes puss when infected. I am almost constantly on antibiotics for this at the MRSA is proving very difficult to treat. Maybe this is another factor in their decision in not doing the Roux-En-Y at present and will change their minds if i can get rid of the infections by my April appointment.