Esophagus keeps restricting

I'll let you know. I need a 60 Fr for sure. that's what I get dilated up to every 10-14 days. I'm going to try to find someone local. If not, I'll fly to phoenix. Really appreciate your response.

I had the same experience after my surgery. About a month after surgery my esophagus closed up at the junction where it was attached to my redesigned stomach. Balloon dilation solved it but didn't last long. I started to require balloon dilations every two weeks, and this went on for a close to two years. The GI doc then put a stent in, which at first was very uncomfortable, and painful. I got used to it, and over the next year and a half I had several stents placed, as they tend to migrate into the stomach when the sutures break. I talked to a fellow EC patient who was doing self dilation of the esophagus. Sounded interesting so I discussed my GI Doc, who was very familiar with the procedure, but could not provide the dilator, or the training required at the hospital he was associated with. He put me in touch with a doctor at the Mayo Clinic in Phoenix. I then set up an appointment at Mayo, and the doctor removed my stent one day, and trained me on self dilation the next. That was in November of 2023, and I have been performing self dilation every day since. It has been a life changer for me, and is not as "bad" as it sounds. It takes approx. a minute a day to do. I will be doing it for the rest of my life, but it is much better than the alternative. If you want additional information, please let me know. Good Luck!!!

I'm going Thursday for my fifth dilation, all under anesthesia. I'm in Huntsville, AL and my GE doc here stretches to 20mm, which equivalent, I understand, to 60 FR. I had my last at MD Anderson, in Houston, where I was treated, only with chemo radiation. I was dilated, among other things, on 8/5/'26. He only dilated to 18mm, because we were flying in two days. I started feeling a little tighter about a month ago, although I can still eat about what I want. My GE here is pretty young. We mentioned DIY, actually I did as a joke, in the OR just before the last one. All in the OR laughed and the doctor said "some people do." If it keeps on at this pace, I'll certainly be interested in it. Mine was squamous, in the middle third, and originally staged as advanced III (confined to esophagus, no hot regional or distant nodes) and later lowered to II, it was circumferential of my esophagus, so that they couldn't even get a wire down. I finished treatment on 5/15/'25 and am so far NED. Self-dilation is very interesting to me...

Many questions to begin working on your esophageal riddle. First off... I too had some issues. I was a stage 3 adenocarcinoma, lower third (T3N1M0). Diagnosed in March 2020, J tube installed week after dx, then CROSS protocol, esophagectomy July 2020. But weight loss kept coming (I was tight at the anastomosis, 5mm, even after 6 months post-op). I was at 220 lbs before my EC came along, hit my low of 160 lbs at 6 months post-op. But then I had 4 stretches over 4 months... back to 16 mm. Not perfect... but close enough. I quickly put weight back on.... 20 lbs in 2 months.

So... I need to know your particulars like I just stated about myself. But here's what I think.

Firstly, esophageal strictures have many causes. For us esophagectomy patients (not all of us make it to surgery)... this is the obvious culprit as this anastomosis scar tissue can sure limit food passage, cause spasms, cause a shelf, etc. And this anastomosis stricture does not loosen up over time... it'll stay this way forever! But... it is usually fixable with some stretches, over time. Our GI doc just needs to proceed with caution, not cause a perforation, bring us along slowly but surely. But the key here is how soon did your stretches start? I find that those who get stretched early (say just a month post-op)... their stretches don't hold as long (their anastomosis scar tissue has not yet firmed up), and they need to be stretched much more often. But the need for dilations is hit or miss... maybe 50/50... some of us post-op never need a single stretch.

Secondly, our neoadjuvant treatments (especially radiation) can cause damage and strictures within the remaining original esophagus. Also, our treatments may alter the viability (quality) of our esophageal tissue... which our thoracic surgeons are left to work with as they piece us back together.

Ok... so we're all a bit behind the 8-ball post-op... and getting digestion going again is already daunting! This takes a good 2 years.

But vomiting... from all I've seen, although this can come from anastomosis issues, it mostly comes from further down... the pylorus... where our food leaves our new stomaphagus and enters the top of the intestines (duodenum). I've seen many patients find relief once this area was stretched, or injected with botox, or even given a few snips via endoscopy. Once motility is improved, vomiting stops.

Anyways... you wanna chat (since I've talked to hundreds of EC patients)... just private message me. Be well,

Gary

@mrgvw
Can someone perform self-dilation if they have had chemo and radiation for a distal esophageal mass that was 5.8x4.0x4.4cm to unable to detect to now having moderate, circumferential erosive esophagitis and a stricture that was originally 5 mm but was recently stretched to 10 mm but only lasts a few days until having to reply only on smoothies and liquids. Have had three dilations performed so far. Pulled out my own J-tube finally a couple months ago. Couldn’t take it anymore. With the constant leaking.

I'm going Thursday for my fifth dilation, all under anesthesia. I'm in Huntsville, AL and my GE doc here stretches to 20mm, which equivalent, I understand, to 60 FR. I had my last at MD Anderson, in Houston, where I was treated, only with chemo radiation. I was dilated, among other things, on 8/5/'26. He only dilated to 18mm, because we were flying in two days. I started feeling a little tighter about a month ago, although I can still eat about what I want. My GE here is pretty young. We mentioned DIY, actually I did as a joke, in the OR just before the last one. All in the OR laughed and the doctor said "some people do." If it keeps on at this pace, I'll certainly be interested in it. Mine was squamous, in the middle third, and originally staged as advanced III (confined to esophagus, no hot regional or distant nodes) and later lowered to II, it was circumferential of my esophagus, so that they couldn't even get a wire down. I finished treatment on 5/15/'25 and am so far NED. Self-dilation is very interesting to me...

@earle It is interesting to find another person that had a squamous ( mine was in middle third too) that is doing ok with only chemorad. I refused the surgery and am NED for 7 years now. The effects of radiation to the chest have not gone away as you so well know but I am grateful that my cancer was found d early stage. I had upper endoscopy every 3 then every 6 months then every 1 yr now am up to 2 years. Hang in there!