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Living with a cervical esophagostomy/ spit fistula

Posted by bertie69 @bertie69, Apr 5 1:29pm

Hi/ I’m new to this group. I had an emergency esophagectomy after the initial Ivor Lewis procedure failed. I was getting ready for a reconstructive procedure using the colon but was informed my cancer had metastasised to my liver so would not be getting the surgery. I’ve been living like this since July 2025 and was wondering if there are others in a similar situation and how you cope with it. Thanks

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mrgvw | @mrgvw | Apr 6 8:30am

Oh my... I feel for you, living with your spit fistula. How is it you are "living" with these liver mets? What treatments are ongoing... maybe holding your EC in check? What chemo/immuno regimens have you already done? I'll assume your esophagus had already been divided and the surgeon had no choice, once mets were seen, to leave you with the spit fistula. So... a J or G tube was also installed? How's your weight?

Gary

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bertie69 | @bertie69 | Apr 6 9:20am
In reply to @mrgvw "Oh my... I feel for you, living with your spit fistula. How is it you are..." + (show)
Profile picture for mrgvw @mrgvw

Oh my... I feel for you, living with your spit fistula. How is it you are "living" with these liver mets? What treatments are ongoing... maybe holding your EC in check? What chemo/immuno regimens have you already done? I'll assume your esophagus had already been divided and the surgeon had no choice, once mets were seen, to leave you with the spit fistula. So... a J or G tube was also installed? How's your weight?

Gary

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@mrgvw thanks for your interest. The oesophagus was completely removed as I had a leak after the first surgery - I think they moved me too soon and didn’t pick up on the fever signs so when they did they had to completely remove the remaining oesophagus and the stomach used in the repair. I was then tested and cancer free so had planned the reconstruction but then the pre op tests showed the liver mets. You can see why I don’t play the lottery with my luck! So I’m currently having Folfox and got the 4th one this week. I’m not suitable for immunotherapy or anything else I was tested for. So my reconstructive work was cancelled. I have liquid nutrition pumped into my stomach through a peg. But the bag on my neck is a stoma bag not designed for this purpose so I’m having to tape it on - which has caused my skin to dry up and crack/ bleed. If it wasn’t for my family I don’t know how I would cope - hence my post to see if any others are in a similar situation. I will have a fresh CT after this next chemo to see what’s what. Thanks again

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bertie69 | @bertie69 | Apr 6 9:32am
In reply to @mrgvw "Oh my... I feel for you, living with your spit fistula. How is it you are..." + (show)
Profile picture for mrgvw @mrgvw

Oh my... I feel for you, living with your spit fistula. How is it you are "living" with these liver mets? What treatments are ongoing... maybe holding your EC in check? What chemo/immuno regimens have you already done? I'll assume your esophagus had already been divided and the surgeon had no choice, once mets were seen, to leave you with the spit fistula. So... a J or G tube was also installed? How's your weight?

Gary

Jump to this post

@mrgvw apologies I forgot to answer the weight question. In preparation for the reconstruction I worked really hard to put weight on and done daily physio. I have reached my ideal weight but have lost the drive to maintain the exercise or anything due to the change in my situation and the surgery now off the table. My family will no doubt keep me focused.

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mrgvw | @mrgvw | Apr 6 10:18am
In reply to @bertie69 "@mrgvw apologies I forgot to answer the weight question. In preparation for the reconstruction I worked..." + (show)
Profile picture for bertie69 @bertie69

@mrgvw apologies I forgot to answer the weight question. In preparation for the reconstruction I worked really hard to put weight on and done daily physio. I have reached my ideal weight but have lost the drive to maintain the exercise or anything due to the change in my situation and the surgery now off the table. My family will no doubt keep me focused.

Jump to this post

@bertie69

Wow... you are something else... keeping depression at bay. We see many on difficult EC journeys on our twice-weekly EC and Esophagectomy Zoom calls. Stay strong.

Gary

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