Just wanting to see if anyone has any experience of the symptoms my dad is suffering post-op.
Dad had T3/N1/M0 cancer of the Gastro-Oesophageal Junction. He had three rounds of ECX chemo to begin with. During the surgery they had to remove his entire stomach and part of the oesophagus, they also took 12 lymph nodes and found cancer present in one. They have since also changed the M0 to MX, which I understand to mean they cannot determine if the cancer has spread or not. They did say they got the whole tumour with a clear margin.
Immediately after the surgery he was recovering well, after about 20 days or so he started to have trouble swallowing, saying it felt like there was a lump at the top of his throat. This developed into fits of coughing and now he brings up bile after everything he eats/drinks. The same thing is also happening with his JEJ tube feed and all the recommend fortisips, ensure etc. The only things that seem to not have this effect are black tea and consommé soup.
The hospital have done endless tests including sessions with speech & language team, a videofluroscopy, ct scans. Numerous combinations of medications including Sucraflate, Metoclopramide, Domperidone, Cholestyramine and Maalox. None have resolved the problem or improved it. The problem has been reported to us as bile reflux/over production of bile, however they are at a loss as to why the same problem occurs with the JEJ tube as apparently this should never cause bile production as the tube goes in below the bile duct.
He is getting nigh on no nutrition at all and has so far lost 3.5 stone and he did not have that amount of weight to lose in the first place.
We are almost 12 weeks post op, 8 of which he has spent as an in-patient at the hospital. Follow up chemo has been cancelled as he is not fit enough to have it.
Tomorrow they are inserting a PICC line to hook him up to a machine 20 hours a day which will not aid nutrition but get all the vitamins/minerals needed as these are severely depleted now.
Has anyone had experience of this bile problem, I have read a bit about people having it during the night if they lay down flat, but it happens to dad after everything he eats and drinks. He can swallow food, so its not a problem with it going down he just says that feels a bit uncomfortable. I should also mention that he has never thrown up any food, its always just pure bile and clear foamy thick saliva.
If anyone can help at all we would be endlessly grateful as we are getting absolutely nowhere at the moment.
Thanks for reading and sorry for going on!