Anyone out there performing self Esophageal dilation

I've seen a few folks who have been self-dilating... but it's certainly not common. I too had a crazy tight anastomosis... I was stuck at 5mm, but did not have my first dilation until 6 months post-op. My GI guy (who takes care of many EC and esophagectomy patients) told me it was actually a good thing I waited 6 months for my first stretch. He said my scar tissue at the anastomosis was nice and firm now... would hold a stretch much better (from his experience). So... not wanting to cause a perforation, he brought me along slowly, at about one stretch a month.... for just 4 months. I think I went from 5mm to 8, then maybe 8 to 11, then 11 to 15, and now I'm about 17mm... and holding for the past 30 months. Certainly not perfect... but close enough.

So... a couple of questions. Were you stretched soon after your esophagectomy... within a month or two? And you mentioned connecting "two bowels back together"... did you have a colon interposition esophagectomy? Most of us simply have our stomachs pulled up and connected to what remains of our esophagus?

Since I talk to hundreds of us EC patients worldwide, it just seems that those who get stretched very early on post-op... get stretched often. I know some who have had 20 or more stretches in the first year or two. But we're all different... I find it's a 50/50 thing... even needing dilations. Some of us do, some never do. But these are just the trends I seem to see... so I counsel my fellow patients that should they need stretching, put it off for a bit to let their scar tissue firm up more.

But congrats on still being NED! My surgery was in July 2020... sounds like I'm at least a year behind you... and I've been moved to yearly scans now (along with my Signatera floating DNA monitoring).

Gary

I was stretched within a month after surgery. The connection closed up to the point I couldn't swallow my own saliva. Multiple (excess of 20) dilations followed for the first year and a half. My stomach, what was left of it was pulled up also. The cancer was in my stomach lymph nodes also, so I had quite a bit of stomach removed. My bougie is 48FR (16MM) so we are close to having the same diameter. My surgery was Oct., 2019, so yes we are not quite a year apart.

Ok... so the big question... when was the cancer seen in your stomach and/or surrounding lymph nodes? I would think if in the confirming scan prior to surgery, the surgery would have been called off. If your post-op pathology showed positive lymph nodes or at the margins of what parts of the stomach and esophagus that were removed... then you would have done a ton of adjuvant chemo. Did you do these treatments post-op?

And did you not wake up with a J tube post-op? Something you could lean on as you recovered from surgery? This would have helped immensely.

@v132077, in this video, Mayo Clinic gastroenterologist, Dr. Magnus Halland, M.D. talks about esophageal self-dialation for patients dealing with swallowing difficulties due to narrowing of the esophagus,

- Esophageal Self Dilation Therapy: An Effective Alternative: https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/esophageal-self-dilation-therapy-an-effective-alternative/

@walisky @rlp63 @jmfarris @peggyschr @drupoint also share their experiences in the comments.

Thank You!! This is excellent. I’m going to present it in another support group I belong to and have mentor others with the same or similar issues.

Fantastic! Thank you.