Hi I had surgery last October and had my tumour removed very successfully. But since then my throat keeps closing up and I have had about 8 dilation already. Since I had lost so much weight I have a jej feeding tube. My question is did anyone else have this problem? Is there a plan B that anyone has had? I am not sure if it this or covid but I just feel unable to move forward. I would just love a proper meal.
Sorry for the rambling on!
Hi , It’s been eight years since my oesophagectomy but I remember during the first couple of years I had quite a number of stretches. It’s a tightening of the scar tissue. I know it’s annoying but over time it does settle down.
Best Wishes, James.
CCFC has more qualified response from eight years's experience. Patience is key as well acceptance of the new normal.
Its 12 months post your surgery so still the recovery will be in its infancy stage. We all are different and heal differently, the most common factor is the time required to heal is a lot.
Glad to see you have got jej feeding, it is good for your weight and nutrition sustenance.
I guess the oesophagus is not nil, unless you dont want to try. I believe because of the issues of nutrition you have been given the enteral feeding tube, has the GI team asked you to contue to try swallowing if possible?
Hi thanks for your response. Yes I am trying to eat as much as I can when my throat is o.k. I ended up in A &E from chocking on food!! I think I just need to know its going to end. It's so hard not seeing anybody during Corvid time. But I am gaining weight from having the feed.
Delighted that your weight is on good side of the scale, thats very important factor. This gives you a margin to work on your oesophagus muscles.
I do often get spasm in my oesophagus and its quite intense choking feeling for which I have to sit upright and wait for it to subside on its own.
There is plentiful older posts on what intake worked for patients who were having issues similar to you. Suggest having a read of those threads in here and maybe give it a safe go starting like a baby feed, slurried extra watery food and slowly gradually work from there upwards. Water may be much easier to try out as it may cause less of complications.
My gut feeling is if the (oesophagus) muscles go completely unworked it may make more difficult down the line for getting a normal oral intake. Plus factor is the weight gained due to the enteral feed, hence suggestion to keep working on the oesophagus. Within reasons please.
Sorry to hear that you are having these issues.
I’m hoping you are trying to take some soft food & drinks to keep swallow reflex going?
The weight issue is worrying me regarding my husband . Initially he came home with jej , then it was removed after a couple of months . He thrived for a few months & now has lost so much weight that I fear for his well being.
I think we are at the stage when jej may be going back in!
Stay strong and hope this all resolves for you!
Best wishes.
I'm 10 years on but have had many stretches over the years and lots during the first 2. As others have said its a long slow recovery, because they cut the vagus nerve, which is the brain of your gut, digestive system etc, your gut in the beginning works on gravity, so small well chewed snacks are best. You need to teach your gut to accept food agin. think about a baby starting on solids and slowly progressing this is the process we have to do. For some its a lot quicker than others it depends on lots of factors but as Mauser mentions you need to eat to get the process started and your gut remembering what to do . Starting with , small tiny portions of soft food Don't eat normal size meals, you will feel very full, and if you eat too much (one mouthful too much) it will be like having stuck two fingers down your throat. It's a bit trial and error. Just keep trying with small portions start on soups, scrambled eggs on toast, cream cheese on toast or crackers, biscuits, vegetables with cheese sauce,. If you can, eat sauce with most foods, and if you can squish food into a ball in your hand avoid it to start with, ie fresh bread, large chips, pastry, sandwiches , I eat toast most of the time you have to chew it to swallow it. Most of us get back to being able to eat most things but not for at least 18 months and for many of us a bit longer, patience is something we all need on this recovery. You can learn how to get lots of calories in a tiny portion by fortifying it or adding cheese, cream etc, eat ice cream, chocolate, anything you fancy..
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