What instructions were you given by your doctor who installed your stent? Where are you on your EC journey? Are you doing neoadjuvant treatments... still making your way to surgery? What stage are you?
In general, I can't say I'm a fan of getting a stent... although there are situations where they have their justified applications. They tend to migrate, can be uncomfortable, and often have to be fished out of the patient's stomach. If they're being used to help the patient eat, and surgery is still an option, I'd much prefer a J tube for long term use. What type and size stent has been placed? How long will this one last? Is it for very short-term use (a couple of weeks?)
Be very careful when eating them. I have had several stents and it is possible to “plug” them up. When that happens it is extremely difficult to “unplug” it. I no longer have to rely on stents as I do self dilation to keep my junction stretched out.
We were very vague in the question. My husband has stage four. Surgery was not an option. He went through 15 rounds of radiation then started chemo and only made it through 4 rounds and couldn’t take it anymore. During that time he had a feeding tube inserted due to closure of the esophagus. It got worse over time and he was fully dependent on it for nutrition but he missed eating. He received the stent (very small) last week annd doctor said area was tight due to cancer. He’s thrilled with being able to eat some foods (very soft). Unfortunately the pamphlet given to us after surgery referred more to intestinal stents. He googles everything but couldn’t find anything on the edamame beans . I know it seems crazy but he loves certain things but is very careful. He was well aware of the risks getting the stent but felt it was worth the risk. Even drinking water is no longer an issue. I’m happy he has something positive come out of this awful journey for him.
Be very careful when eating them. I have had several stents and it is possible to “plug” them up. When that happens it is extremely difficult to “unplug” it. I no longer have to rely on stents as I do self dilation to keep my junction stretched out.
Self dilation is a procedure that can be done at home rather than having an endoscopy with balloon dilation. It involves inserting a bougie (dilator) into your esophagus and gently pushing until it passes through the stricture. I use a 48FR (16MM) dilator and insert it 22 inches into my esophagus. I do it first thing in the morning and it takes about 3 minutes. I have been doing for 2 years now and it has been a life changer. No more stents and the need for 2 endoscopy a month. I am not sure your husband would be a good candidate for this while he still has the tumor. Your GI doctor could advise you on that. I had surgery in 2019 and my esophagus began closing about a month after surgery from lack of blood flow where the connection was made. I wish you and your husband the very best in your battle with EC.
I've seen a few folks, over in SmartPatients, who self-dilate... but I believe all were post-esophagectomy. Not sure how applicable this would be for a growing solid tumor still in the esophagus. But his situation is one of the reasons I could see where a stent makes sense... simply to enjoy the pleasure of swallowing a bit... and he has a feeding tube to rely on (assume a G tube since surgery is not in his future). Whatever he eats just needs to be small enough, and well chewed (or liquefied) to be able to pass thru the stent. I would think he would quickly know if anything was hanging up on the stent.
Self dilation is a procedure that can be done at home rather than having an endoscopy with balloon dilation. It involves inserting a bougie (dilator) into your esophagus and gently pushing until it passes through the stricture. I use a 48FR (16MM) dilator and insert it 22 inches into my esophagus. I do it first thing in the morning and it takes about 3 minutes. I have been doing for 2 years now and it has been a life changer. No more stents and the need for 2 endoscopy a month. I am not sure your husband would be a good candidate for this while he still has the tumor. Your GI doctor could advise you on that. I had surgery in 2019 and my esophagus began closing about a month after surgery from lack of blood flow where the connection was made. I wish you and your husband the very best in your battle with EC.
Isn’t it difficult to self dilate? My husband just had a stent out in and is still having difficulty swallowing. I’m wondering if it may come to this eventually. Are you restricted on what you can eat?
My husband had the esophogectomy and could eat at first, but with all the mucus and all he kept getting worse and couldn’t even drink water.
Isn’t it difficult to self dilate? My husband just had a stent out in and is still having difficulty swallowing. I’m wondering if it may come to this eventually. Are you restricted on what you can eat?
My husband had the esophogectomy and could eat at first, but with all the mucus and all he kept getting worse and couldn’t even drink water.
It is not difficult at all, but can be a little intimidating at first. Most people I have worked with were afraid of “gagging”. I was a little worried about that also, but the gagging reflex is mostly physiological. I prepared myself mentally for this and have never gagged once in the 700+ times I have done it. No diet restrictions. I eat whatever I want without any issues. I have gained 20 pounds back since starting this. If you would like to witness an actual self dilation, I can share some videos with you. Good Luck.
Isn’t it difficult to self dilate? My husband just had a stent out in and is still having difficulty swallowing. I’m wondering if it may come to this eventually. Are you restricted on what you can eat?
My husband had the esophogectomy and could eat at first, but with all the mucus and all he kept getting worse and couldn’t even drink water.
I don’t have problems with mucus. My issues were my throat kept closing and would require an EGD a couple times a month to get stretched back out. The stents worked but I got tired of them and looked for a different solution to the problem. I met someone from a cancer support group I belong to who was doing self dilation. It sounded like something I could try so I teed it up with my GI doctor who was very familiar with it and told me it was worth trying, so I did and it has worked wonderfully. I am not sure your husband would be a candidate because of the mucus issues but it definitely would be worth your time discussing with his doctors.
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What instructions were you given by your doctor who installed your stent? Where are you on your EC journey? Are you doing neoadjuvant treatments... still making your way to surgery? What stage are you?
In general, I can't say I'm a fan of getting a stent... although there are situations where they have their justified applications. They tend to migrate, can be uncomfortable, and often have to be fished out of the patient's stomach. If they're being used to help the patient eat, and surgery is still an option, I'd much prefer a J tube for long term use. What type and size stent has been placed? How long will this one last? Is it for very short-term use (a couple of weeks?)
Gary
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1 ReactionBe very careful when eating them. I have had several stents and it is possible to “plug” them up. When that happens it is extremely difficult to “unplug” it. I no longer have to rely on stents as I do self dilation to keep my junction stretched out.
We were very vague in the question. My husband has stage four. Surgery was not an option. He went through 15 rounds of radiation then started chemo and only made it through 4 rounds and couldn’t take it anymore. During that time he had a feeding tube inserted due to closure of the esophagus. It got worse over time and he was fully dependent on it for nutrition but he missed eating. He received the stent (very small) last week annd doctor said area was tight due to cancer. He’s thrilled with being able to eat some foods (very soft). Unfortunately the pamphlet given to us after surgery referred more to intestinal stents. He googles everything but couldn’t find anything on the edamame beans . I know it seems crazy but he loves certain things but is very careful. He was well aware of the risks getting the stent but felt it was worth the risk. Even drinking water is no longer an issue. I’m happy he has something positive come out of this awful journey for him.
What is self dilation?
Self dilation is a procedure that can be done at home rather than having an endoscopy with balloon dilation. It involves inserting a bougie (dilator) into your esophagus and gently pushing until it passes through the stricture. I use a 48FR (16MM) dilator and insert it 22 inches into my esophagus. I do it first thing in the morning and it takes about 3 minutes. I have been doing for 2 years now and it has been a life changer. No more stents and the need for 2 endoscopy a month. I am not sure your husband would be a good candidate for this while he still has the tumor. Your GI doctor could advise you on that. I had surgery in 2019 and my esophagus began closing about a month after surgery from lack of blood flow where the connection was made. I wish you and your husband the very best in your battle with EC.
-
Like -
Helpful -
Hug
1 ReactionI've seen a few folks, over in SmartPatients, who self-dilate... but I believe all were post-esophagectomy. Not sure how applicable this would be for a growing solid tumor still in the esophagus. But his situation is one of the reasons I could see where a stent makes sense... simply to enjoy the pleasure of swallowing a bit... and he has a feeding tube to rely on (assume a G tube since surgery is not in his future). Whatever he eats just needs to be small enough, and well chewed (or liquefied) to be able to pass thru the stent. I would think he would quickly know if anything was hanging up on the stent.
Isn’t it difficult to self dilate? My husband just had a stent out in and is still having difficulty swallowing. I’m wondering if it may come to this eventually. Are you restricted on what you can eat?
My husband had the esophogectomy and could eat at first, but with all the mucus and all he kept getting worse and couldn’t even drink water.
It is not difficult at all, but can be a little intimidating at first. Most people I have worked with were afraid of “gagging”. I was a little worried about that also, but the gagging reflex is mostly physiological. I prepared myself mentally for this and have never gagged once in the 700+ times I have done it. No diet restrictions. I eat whatever I want without any issues. I have gained 20 pounds back since starting this. If you would like to witness an actual self dilation, I can share some videos with you. Good Luck.
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Like -
Helpful -
Hug
1 ReactionMy husband takes a medicine that helps with the mucus. Have you asked your doctor about something to help?
I don’t have problems with mucus. My issues were my throat kept closing and would require an EGD a couple times a month to get stretched back out. The stents worked but I got tired of them and looked for a different solution to the problem. I met someone from a cancer support group I belong to who was doing self dilation. It sounded like something I could try so I teed it up with my GI doctor who was very familiar with it and told me it was worth trying, so I did and it has worked wonderfully. I am not sure your husband would be a candidate because of the mucus issues but it definitely would be worth your time discussing with his doctors.