Esophagus keeps restricting

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!!!

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

What is self dialation? I have to have my esophagus stretched often and it doesn’t help a lot. Sometimes I can’t swallow my own salavia .

Been there. I was getting stretched every week for a while. In laymen’s terms, self dilation is manually stretching your esophagus yourself. It is done with a “dilator” that you carefully insert and gently push into your throat until it passes through the connection where your esophagus was reattached to your redesigned stomach. This stretches your esophagus out. I use a 48 FR (16mm) dilator and insert it 22 inches to the connection. It is painless and takes approximately 2-3 minutes from start to finish. I have been doing every day since November of 2022. For me it has been a life changer. I eat anything I feel like and as much as I want. If you would like more info I can forward a YouTube showing actual people performing the procedure on themselves. I have also done a video that my GI doctor asked me to do for another patient who was considering this.

It doesn’t make you gag?

Not once have I gagged doing this. I was worried about the gagging up front but the Doctor explained that a gag reflex is “mind over matter”. I was able to put it out of my mind and move on. I desperately wanted to get rid of the stents that had been required and I prepared myself mentally to tackle the self dilation. It has worked very well. Anyone could do it.

who taught you how do do the self dialation. I'm strongly considering it as I have had 9 stretches now. Takes 4-5 hours from the time i leave my house, check in, do the procedure, wake up, check out and drive home. I've seen the You tube videos. they show that even if you are afraid, you can still learn. I'm on board. I just need a clinician to teach me how. where do you purchase the Maloney Dialators?

I went to Dr. Allon Kahn from Mayo in Phoenix. Outstanding Doctor and wonderful person. He removed my stent one day and trained me on the self dilation the next. Been doing on my own ever since. You will need to be fitted for the right size dilator. Mine is a 48FR. You can get the dilator from Dr. Kahn once it is determined what size you need. Good Luck and let me know if you decide to do this.

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.